KFF Health News' 'What the Health?': All About the (Government) Funding
The Host
Julie Rovner
KFF Health News
Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
As this election year begins in earnest, making it harder for Congress to pass bills, lawmakers on Capitol Hill are still struggling to fund the government for the fiscal year that began last October. And many health priorities hang in the balance.
Meanwhile, the Supreme Court is again wading into the abortion debate, accepting a case out of Idaho that pits a federal law requiring emergency care, including for pregnant women, against the state’s strict abortion ban.
This week’s panelists are Julie Rovner of KFF Health News, Sarah Karlin-Smith of the Pink Sheet, Tami Luhby of CNN, and Alice Miranda Ollstein of Politico.
Panelists
Sarah Karlin-Smith
Pink Sheet
Tami Luhby
CNN
Alice Miranda Ollstein
Politico
Among the takeaways from this week’s episode:
- In Washington, lawmakers have reportedly reached a deal that could pave the way for passing necessary government spending bills. But it is unlikely they will pass a full package before the current extensions end, leaving many federal health programs hanging. And ahead of next week’s Iowa caucuses, it bears asking what Republicans would do in health if the party reclaims the White House.
- The Supreme Court is again stepping into the fray over abortion rights, choosing to review the conflict between Idaho’s abortion ban and a federal law requiring emergency medical care. It is notable that justices did not have to take this case and, by swooping in now, are setting up another major abortion ruling before the 2024 election.
- The Biden administration announced it will scale back so-called conscience protections for health providers that the Trump administration sought to beef up. The back-and-forth over the policy — which was created during the George W. Bush administration — reinforces the importance of pressing presidential candidates about what they would do administratively on abortion policy, rather than asking what bills they might sign into law.
- News out of Florida this week: Newly introduced legislation there would, among other things, classify abortion as a felony and penalize those outside the state involved in the sale or distribution of abortion pills if they are “likely to be used in Florida” — a concerning example of a state effort to regulate access to abortion nationwide.
- And the FDA approved Florida’s request to import drugs from Canada, a change for which Republican Gov. Ron DeSantis is taking credit — though both President Joe Biden and former president Donald Trump could also claim some of that credit. But there are a lot of hurdles left before the state receives its first shipments, and due to the way the policy will be implemented, it may not save the state much money anyway.
“This Week in Health Misinformation” highlights Olympic gold medalist and medical crowdfunding beneficiary Mary Lou Retton, who said this week she could not afford health insurance before her headline-grabbing bout of pneumonia because her preexisting conditions made having insurance too expensive. But a decade into the existence of the Affordable Care Act, the fact is that patients can no longer be penalized on the insurance market for preexisting conditions — and, as the record 20 million Americans who enrolled in ACA coverage this year may attest, there are plenty of federal subsidies available to help afford insurance, too.
Also this week, Rovner interviews American Medical Association President Jesse Ehrenfeld, whose focus is helping the nation’s physicians navigate a rapidly changing health care system.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: CNN’s “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says,” by Sandee LaMotte. Also, ScienceAlert’s “It Turns Out Paper Straws Might Pose a Serious Problem Too,” by Carly Cassella. Also, The Washington Post’s “How Plastic Hides in Supposedly Eco-Friendly Laundry Products,” by Michael J. Coren.
Tami Luhby: KFF Health News’ “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by Phil Galewitz.
Alice Miranda Ollstein: Stat’s “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University,” by Rachel Cohrs.
Sarah Karlin-Smith: The New York Times’ “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” by Christina Jewett and Benjamin Mueller.
click to open the transcript
Transcript: All About the (Government) Funding
KFF Health News’ ‘What the Health?’Episode Title: 329Episode Number: All About the (Government) FundingPublished: Jan. 11, 2024
[Editor’s note: This transcript was generated using both transcription software and a human’s light touch. It has been edited for style and clarity.]
Julie Rovner: Hello, and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Jan. 11, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this, so here we go. We are joined today via video conference by Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Hello.
Rovner: Sarah Karlin-Smith of the Pink Sheet.
Sarah Karlin-Smith: Hi, everybody.
Rovner: And Tami Luhby of CNN.
Tami Luhby: Good morning.
Rovner: Later in this episode, we’ll have my interview with Jesse Ehrenfeld, this year’s president of the American Medical Association. It’s a bumpy time to be a doctor, and the AMA is more relevant than it’s been for quite a few years. But first, this week’s news. So we heard over the weekend that House and Senate negotiators reached a deal on top-line spending ceilings for defense and non-defense discretionary spending.
Actually, they were kind of the top lines, I believe, that they agreed to last summer, and then the House Republicans tried to change. That is all well and good, and it is definitely a prerequisite for passing full-year appropriations bills, but that’s not going to happen between now and Jan. 19, when the first of two temporary spending bills expires. So what do we expect to happen?
Ollstein: I was up on the Hill yesterday, and it’s a very “what they’re saying vs. what they’re doing” situation. They’re talking a lot about, “We got this top line. We’re moving forward. People are somewhat warming to the idea of another short-term CR [continuing resolution] to give them a little breathing room to get this done.” But then Republicans who were pissed about the entire process voted down an unrelated rule on an unrelated bill just to say, “We’re mad.” So that’s obviously not a good sign for getting big things done quickly in the next few weeks.
An issue I’m tracking is also conservatives who are disgruntled about the level of spending being higher than they wanted, saying, “Well, if we’re going to agree to this, we might as well get some policy wins out of it.” And they’re digging in harder on some of these anti-abortion provisions, other culture war things. I think the health care ones are being somewhat overshadowed right now by the immigration border stuff, but the health care things are still in the mix, for sure.
Rovner: Yeah. The CR that expires first also includes continuing authorizations for a bunch of health programs like community health centers and a delay of a bunch of scheduled Medicare payment cuts. Tami, you’re following WIC [Women, Infants, and Children nutrition program], I know, and food stamps. Do we have any idea what the fate is going to be of these things that will also expire when that first CR expires? Do we expect they’ll continue until Congress decides what to do?
Luhby: Well, actually things are looking a little better for WIC participants in terms of a shutdown, not necessarily in terms of full-year funding. But if the government had shut down in October, the USDA warned that it actually only had a few days left of money to provide for WIC. But if the government does shut down next week, then the USDA has told me that SNAP participants, food stamp participants, and WIC participants can expect to continue to get their benefits for food stamps January and February and for WIC January, February, March.
But separate from that, one of the issues that WIC participants have — and WIC, by the way, is the program that provides funding for pregnant women, new moms, infants, and young children to buy groceries. The WIC program is underfunded because there’s actually a big growth in enrollment. And so, even though the Senate provided some more money in their initial bill, they actually need more than a billion dollars more to continue the program at the current participation levels.
And a lot of folks are warning that if Congress doesn’t provide more money, there could actually be waiting lists for the first time in decades. So it’s a big issue that’s continuing because, as we know, the Republicans are not looking to add more money to nutrition assistance.
Rovner: Jumping ahead, it’s a little bit to the abortion debate. This is the argument that if you’re basically going to force women to have babies, you’re going to need to help support them if the women otherwise would’ve had an abortion because they couldn’t afford it. I think where we are with WIC, I think, is sort of the leading edge of this.
Luhby: And WIC is actually very important to that because it also provides breastfeeding assistance and guidance as well as other supports for new moms.
Rovner: So there were things, though, that didn’t even make it into the CR. One of them is the 3.4% cut in Medicare doctor pay. That took effect Jan. 1. Doctors I know would like to get that rolled back. There’s other things that are hoping to catch a ride on whatever the next vehicle is, right?
Karlin-Smith: I mean, one thing I had been watching is PBM [pharmacy benefit manager] reform. There seemed like there was some bipartisan and bicameral momentum to try and tack that on to the next big moving package. And one positive thing for that is that it does offer some amount of savings that then could be applied to other areas like spending, including potentially helping maybe with some of the Medicare cuts. So that’s something in the mix to look for.
Rovner: Yeah. Something that actually is proceeding on a separate track, right? We don’t expect that to be folded into the appropriations — unless we do. My impression was that was proceeding on its own, at least for the moment.
Karlin-Smith: I think it was proceeding on its own, but there’s been talk of could they fold it into any deal that struck to fund the government, because I think the likelihood that it really does fully clear both the House and Senate on their own is small.
Rovner: Yes, it is an election year. It is harder for Congress to get anything done. Speaking of which, on the campaign trail, the Iowa caucus is next week. Boy, that sort of snuck up on us. Former President [Donald] Trump still seems very likely to win, and he’s once again vowing to undo the Affordable Care Act, which, by the way, hit an all-time enrollment record of 20 million this week. And open enrollment isn’t even quite over. Tami, do we know what Trump would do instead? That seems to be the part. He doesn’t ever say.
Luhby: No. It’s pretty much the same plan that he probably has from 2016 and 2017, which we never really fully learned about. So, no, it’s just going to be replaced with a “better plan” because, in his view, Obamacare is failing, and as we know, [Florida Gov.] Ron DeSantis also jumped on the same bandwagon, saying that he would actually also come up with a better plan, but he needs a few months to think about it.
Rovner: Because it’s always been right about to happen, of course.
Luhby: Well, as you may have heard, health care is complicated.
Rovner: And we’ll see something in two weeks.
Luhby: Right. Along with his block grant proposal for Medicaid that he mentioned at last night’s CNN debate.
Rovner: Yes. I was sort of taken by the comments of how they would fix health care in that debate, because Nikki Haley says, “We can fix it with tort reform and transparency.”
Luhby: Transparency. Yes.
Rovner: Right. Which are nice things, and as we say, almost every week, Congress is working on those things, but they are not going to solve what ails the health care system. All right, let us turn to abortion. Remember last week when I said we were still waiting to hear from the Supreme Court on the emergency petition from Idaho regarding the conflict between its state abortion ban and the federal Emergency Medical Treatment & Active Labor Act, EMTALA?
Well, on Friday, the court not only took the case, it overturned the stay of Idaho’s ban. So, at least for now, doctors cannot even provide abortions in medical emergencies unless the woman is at immediate risk of death. Alice, I assume that gives us a hint of where the court might be going with this case, and I imagine also that similar case out of Texas.
Ollstein: Yeah. So again, with the Supreme Court, you kind of have to read the tea leaves and make educated guesses. They’re obviously very secretive. But people who are following this case closely that I’ve spoken to, they think that both the stay of the lower-court ruling and the fact that they took this case at all is the sign that they’re really gunning for ruling on the side of the state abortion restrictions. Because this is really about the state-federal clash. When state abortion bans run into federal protections for patients in emergency circumstances, and which will prevail in that circumstance. So they didn’t have to take this case. The thinking was there is eventually going to be a circuit split on this issue between the 9th Circuit and the 5th Circuit. But the 9th Circuit hasn’t had a chance to rule yet. And so they could have waited, let this play out, allowed the 9th Circuit to hear the case and issue a decision, that would’ve probably punted this case until after the election. So it’s really interesting that they instead wanted to swoop in, allow Idaho to leapfrog the 9th Circuit, and also insert themselves into this really politically volatile case, and now they’re poised to issue a ruling right before the 2024 election that could have major implications for the whole country.
Rovner: They’re going to hear the mifepristone case before this summer too, right?
Ollstein: Absolutely. And so even people who had sort of assumed on the mifepristone case like, “Oh, the Supreme Court’s going to kind of punt. They’re going to dismiss on standing.” Now, because of how aggressive they’re being in this other case, I have experts telling me, “Well, now I’m not so sure about the mifepristone case. Maybe they don’t care about optics as much as they used to.”
Rovner: Well, also, I think this is this Supreme Court’s theme, of “let states do whatever they want.” Even though federal law is supposed to trump state law, they seem to be reversing that in a rather aggressive fashion.
Ollstein: Yes. A big theme is definitely skepticism of federal rulemaking power. This falls under that same category as well.
Rovner: Well, speaking of federal rulemaking power, those who follow abortion policy in D.C. know that every time an administration changes parties, the so-called Mexico City policy that bans funding to international groups that support abortion rights gets either canceled or restored, depending on which party is in power. Well, now we have another policy that seems to be flip-flopping every time an administration changes. It was a rule first issued at the end of the George W. Bush administration. The so-called conscience rule made it easier for medical professionals and others in health care to decline to provide care that violates their religious or moral beliefs. So not just abortion but transgender care, in some cases, just treating people with AIDS. The Obama administration scaled back the Bush rule, and then the Trump administration broadened it. Then it got blocked by the courts, and now the Biden administration has formally rolled back the Trump changes that never really took effect. Alice, where are we with this?
Ollstein: Like you said, this is a back-and-forth, and I think this is why a lot of the questions being asked of candidates on the campaign trail right now, related to abortion, are the wrong questions. They keep getting asked about what kind of bills they would sign. That’s not the question. The question is what would they do administratively, which they could do so much. They could undo this. They could reverse all kinds of things. I follow the Title X stuff. I follow the Mexico City policy on restrictions on international spending on reproductive health. There’s just so much, obviously — FDA regulation of abortion pills — but these are the things we should be focused [on], not a bill that Congress has shown itself unable to pass even with one-party control of Congress.
Rovner: Nikki Haley keeps correctly saying there aren’t 60 votes for anything in the Senate related to abortion.
Ollstein: Right. But then, she also is saying that to mean a future Republican president couldn’t really do much, and that part is not true. They could do a lot.
Rovner: Exactly. Well, moving on, it’s January, and state legislatures are coming back into session. And we’re seeing some pretty eye-popping bills introduced in Florida, where abortion rights supporters just secured enough signatures to get a referendum protecting abortion rights on the 2024 ballot. Republican state Rep. David Borrero introduced a bill that would not only ban abortion, it would classify it as a third-degree felony with penalties of up to 10 years in prison. It also seeks to reach anyone outside the state who makes, sells, or mails abortion pills if they are, quote, “likely to be used in Florida.” The bill also defines personhood as beginning at the moment of fertilization, which would, among other things, make most birth control illegal and give fetuses constitutional rights. Alice, this bill is obviously not likely to pass, but legislators are playing the long game here by trying to make these things look sort of not out of the ordinary, right?
Ollstein: Yeah, the pill one, I think, is more the one to watch there. I’m curious if other states try to do that as well. Obviously, that runs into legal concerns about regulating interstate commerce, et cetera. But I think that we’ve seen these sort of nation attempts to restrict the movement of both people and medications across state lines, since that is a huge way that people are managing to terminate pregnancies despite bans right now. And so I think there’s only going to be more and more activity in that area to try to close off those remaining outlets for people. But yes, on the personhood front, that’s something that states have been attempting to do for a long time now, obviously more recently. And I think there’s sort of a strategy of, “Let’s just put it in everything we can. Let’s throw it in everything we can. Let’s throw it in bills. Let’s throw it in amicus briefs.” And the hope is to eventually force this issue in court and to get a court to rule on whether the 14th Amendment covers fetuses, basically. Will that happen and when remains to be seen, but there’s definitely an effort to sort of seed it in the landscape.
Rovner: Sarah, this obviously — not so much the personhood part, although maybe that too — but trying to ban the movement of medication is something that clearly impacts the FDA. They seem to have been pretty quiet about this, but there’s an awful lot that seems to be sort of threatening the basic core procedures of what the FDA does. Are you hearing anybody whispering about this? Is there concern?
Karlin-Smith: I think the mifepristone case at the Supreme Court is a concern for people who watch FDA’s power and regulation, not just because of abortion but because it is seen as depending on how the court decides that case is something that really could touch on all of its regulatory authority as well. Certainly, this provision that Florida is trying to put in is really something where they seem like they’re effectively trying to regulate the abortion pill throughout the entire country and regulate manufacturers. So that would be concerning, again, if that somehow came to pass and was not struck down by courts, as Alice mentioned, for interstate commerce regulation, which is not some power that is usually given to the states, but so, in general, the abortion pill controversy makes anybody who’s impacted by the FDA regulation nervous.
Rovner: Well, meanwhile, the Federal Trade Commission has entered the chat. This week, it barred a tech company from selling data on people’s visits to medical centers and other health facilities. This was not affecting abortion. They were actually just trying to help people figure out where people are and help them sort of get through their medical undertakings. But this seems like kind of a big deal enforcing privacy post-Dobbs. It’s the first one of these I’ve seen. Have you seen any of these, Alice?
Ollstein: I’m in the same camp as you. Yeah. This is sort of the first I’ve seen of this. But as has been the trend over the last couple of years, it’s a very “throw things against the wall and see what sticks” kind of environment, and so you can’t dismiss the outliers because the outliers can very quickly become the norm.
Rovner: This obviously was not a company that was trying to get women’s menstrual data and figure out whether they’re pregnant and whether they’re going to have an abortion. But there is a lot of concern that because there’s so much medical data floating out now in the metaverse, shall we say, that it would not be that hard to do that. And I guess the FTC is trying to plant a flag and say, “Mm-mm, don’t even try.” Although I’m sure people will …
Ollstein: Again, circling back to our previous theme, like, who a presidential administration installs at places like the FTC that you might not think that has anything to do with health care and abortion, but it certainly does. It certainly can. Same with DOJ, Labor Department. A lot of these things touch on reproductive health in ways that aren’t always obvious.
Rovner: That’s right. Well, turning to prescription drug news, the FDA has approved Florida’s request to import cheaper drugs from Canada. But, Tami, you wrote about this. This comes with a long list of caveats, right? It’s not like they just opened the borders and said, “OK, buy what you want.”
Luhby: No, and Florida has also put forth a fairly restricted proposal. It’s only going to be for people in their public payer program, people like inmates and people who are cared for by the county health systems and, later, Medicaid. And it’s also a pretty small list of drugs, drugs for HIV/AIDS and mental illness, and certain ones. But no, there’s a lot of hurdles before the state can actually start importing drugs. There’s going to likely be a lawsuit by PhRMA. They came out pretty strongly against it. They don’t want this, and Canada doesn’t necessarily want this. They said this in 2020 when the Trump administration first indicated that they were going to move in this direction, and then Health Canada on Friday put out a pretty strong statement saying they are clear in its position. “Bulk importation will not provide an effective solution to the problem of high drug prices in the U.S.” So there’s a long path before Florida will be able to actually see this and an even longer path before its general residents will see it. People may think, “Oh, I can go up to CVS now and order my Canadian version of the drug, which will be much cheaper.” And that’s not at all the case.
Rovner: Sarah, this has been going on for more than 20 years — I think I covered it first time in 1998 — because it’s really popular among Republicans and Democrats because it sounds so good. “We’ll just buy cheaper drugs from other countries where they have the same drugs, and they sell them for less money because they have price controls.” But Canada can’t even supply Florida, much less the rest of the country, right?
Karlin-Smith: Right. I think people, sometimes you look at Canada on a map geographically. It’s a very large area, but the population compared to the U.S. is much smaller. So the supply chain that’s feeding Canada is very different. And then you get into why HHS and FDA has usually pushed back against this idea is because they’re concerned about securing the supply-chain safety and making sure people are actually getting what they … think they’re getting and know how to use the drug. And what’s basically happened under starting the Trump administration and then Biden’s kind of continued it is they came up with a pathway to sort of make importation potentially possible. But they put in so many hoops that these states will have to go through and so many processes in place to ensure the safety of it that by the time Florida does all of this, and again, as Tami mentioned, FDA hasn’t cleared any specific drugs for Florida to import yet; each drug product still is going to have to go through a bunch of steps to get that OK. So by the time they do all of that, it doesn’t look like it’s going to save very much money. Florida’s estimating maybe not quite $200 million for the first year and about the same the second year. If you look at just their Medicaid spending in a year on outpatient drugs, it’s like $1.-something billion. So you can see how tiny a savings that is.
Rovner: Yes. This is one of those things that’s not been partisan. It’s always been sort of the FDA wanting to protect the integrity of the supply chain, whether it’s controlled by Democrats or Republicans versus Democrats and Republicans who would like to find a way to help their constituents get cheaper drugs.
Luhby: One thing also to note that’s going to be interesting, because there’ve been so many people involved in this, we saw Ron DeSantis say yesterday at the debate that he took credit for pushing the federal government and beating the federal government, I think he said, to be allowed to import drugs. But this is also going to be a talking point that Trump and Biden will also be able to say on the campaign. So basically, everyone is probably going to try to take credit for this.
Rovner: Right. Everybody’s going to take credit for something that’s probably only going to happen in a very small way, if it happens at all.
Luhby: If it all happens at all.
Rovner: That’s right. Well, also this week, drug maker Eli Lilly said it is setting up its own telehealth service to help patients access not only its soon-to-be blockbuster weight loss drug Zepbound but also other diabetes and migraine drugs, basically cutting out the doctor or at least cutting out the patient’s regular doctor, if they have one. Sarah, this feels to me like a really big sea change. Is the FDA going to let this happen? Is the AMA going to let this happen?
Karlin-Smith: It’s really interesting. I think the first headline of it makes it seem a little bit more extreme or maybe novel than once you actually look into the details because Lilly’s …
Rovner: Kind of like drug importation.
Karlin-Smith: Right. Although I think more patients maybe will actually be served by this program. But, basically, Eli Lilly is setting up a website that will then connect patients to outside telehealth companies that have the ability to prescribe the drug. Again, these telehealth companies are supposedly prescribing all different drugs, not just Eli Lilly products. The doctor’s supposed to make sure you actually qualify for the product, and so forth. And then Lilly also seems to have developed partnerships with a couple online pharmacy companies that could then directly mail you the product. So Eli Lilly is sort of helping facilitate these connections for patients. But I think probably to avoid various scrutinies by the federal government, they’ve tried to disconnect themselves a few steps, but certainly make the process of getting a drug and their drug easier for patients. Also helping ease the process of getting any copay support or coupons the company offers. So they seem to be kind of taking advantage of a trend that we’ve seen in other areas, with ADHD, like male sexual health products, and so forth, of people wanting to do this through telehealth. And so they’re trying to, I think, get at least a cut of it or at least help steer their product there. But there’s definitely going to be questions, I think, around how you handle advertising and other things for the government to look at.
Rovner: Yeah, it’s definitely a space that, now, we’re going to have to start watching as well as everything else. All right. Well, now it is time for “This Week in Health Misinformation,” which is going to Olympic gold medalist gymnast Mary Lou Retton. Retton, who is now in her mid-50s, contracted a rare form of pneumonia, ended up in the hospital for a month, and became the subject of a crowdfunding effort launched by her daughter because she didn’t have health insurance. Retton, who has been very closed-mouthed about her illness and what happened to the half a million dollars the crowdfunding campaign raised, as is her right, did do an interview this week with the “Today” show on NBC in which she said she couldn’t afford health insurance because her preexisting conditions made it too expensive. For the record, if you’re uninsured, you can still sign up for an Affordable Care Act Plan in most states, and you can’t be charged more due to preexisting conditions. And there are still extra subsidies that we talked about earlier that were implemented during covid that makes insurance even more affordable. Why is it that people don’t know this yet?
Ollstein: Well, as we saw with record-breaking enrollment, a lot of people do know it, but the people who don’t are still loud.
Rovner: We’re 10 years into the ACA!
Ollstein: Yes. It’s funny. I mean, living in D.C. and doing this work, I always try to think about what of all of our reporting actually breaks through around the country. And it’s always interesting to see what does and what doesn’t.
Rovner: I used to stomp around the NPR newsroom when the ACA was just getting up and running, saying, “It is not my job to do the administration’s publicity. It’s really not my job.” But …
Luhby: Yeah.
Rovner: … they are still working on it.
Luhby: It also may be selective ignorance, because I’m sure if she actually asked anyone about health insurance or called any agent or insurer and said, “Well, I have this preexisting condition,” they may have said, “Well, on the ACA, it doesn’t matter anymore.”
Rovner: Yes. And that if she said she didn’t have the money after her divorce, it’s like those are the people who are eligible for big subsidies. All right. Well, that is this week’s news. Now, we will play my interview with AMA President Jesse Ehrenfeld, and then we will come back and do our extra credits.
I am pleased to welcome to the podcast, in person here in our D.C. studio, Dr. Jesse Ehrenfeld, president of the American Medical Association. Dr. Ehrenfeld is an anesthesiologist, medical school professor, researcher on medical information technology, and director of a statewide health philanthropy in Wisconsin, among other activities. He’s an Afghanistan combat veteran twice over, as well as the first openly gay president of the AMA and a national advocate for LGBTQ+ rights. Dr. Ehrenfeld, thank you so much for coming in. You are a very busy person.
Jesse Ehrenfeld: Well, thanks for having me. It’s great to talk to you today.
Rovner: So I want to start on Capitol Hill, since we’re here in D.C.
Ehrenfeld: Sure.
Rovner: And Congress is coming back and working on a budget, or so we hear.
Ehrenfeld: We hope they’re working.
Rovner: I know physicians are facing, again, a cut in Medicare pay, but that’s not the only AMA priority here in Washington at the moment, right?
Ehrenfeld: Well, it’s a big one for us. And, you know, it’s really painful that you turn the clock back, Jan. 1, and 3.37% Medicare cut to physician payments. It’s unconscionable. And so we’re optimistic that we can get a fix, hopefully retroactive, as the omnibus consolidation work goes forward, short of this Jan. 19 deadline coming up. But we can’t have it. Physicians continue to struggle. My parents lost their own primary care physician because of a challenge with their primary care doctor not being able to take Medicare anymore. And what we’re seeing is more and more doctors just stopping seeing new Medicare patients, or opting out of the program entirely. So, every other provider under Medicare is actually fighting for how many increase they’re getting while doctors are getting cut. So we’re hopeful that we can solve this, but it really is something that’s just urgent for us as an association.
Rovner: I thought we took care of this in 2015. I feel like it’s Groundhog Day. I covered it every year from about 2003 to about 2015, and then we solved it briefly.
Ehrenfeld: We solved one problem and replaced it with another, unfortunately. And the doomed SGR did die in 2015 — the unsustainable “sustainable growth rate” problem — that did lead to those year-end patches. And, unfortunately now, though, because of budget neutrality rules and other — we’ll call them “features” — of the program, we’re in the situation again. We do have optimism, though, that we might get some standing inflationary updates. There was the introduction of a bill last session. And we hope that that can be something that does move forward once we get through this time-sensitive issue to deal with the 3.37% cut.
Rovner: So I feel like the physician shortage is kind of like climate change. People have been warning about it for decades, and suddenly it’s here.
Ehrenfeld: It’s here.
Rovner: With people having to wait weeks or sometimes months to see a doctor. Obviously, like with climate change, it’s going to take a while to get out of the hole that we have dug. I know we’ve seen the establishment of several new medical schools, both allopathic and osteopathic, in the past decade. How soon might we be able to see some relief, and what more will it take beyond training more doctors?
Ehrenfeld: Well, we’re opening more medical schools, but we’re not actually training more doctors. And that’s the problem. We haven’t expanded GME [Graduate Medical Education] residency programs. And unfortunately, because, as you know, GME funding through the federal government is tied to a fixed cap, set in the 1990s by Medicare, we’ve opened all these new schools and the students don’t have a place to go to train. So that’s a problem that we need to solve. We’ve had a little tiny, tiny increase these past few years, a couple of hundred spots here and there. We need thousands more training spots open. We need the GME dollars to come from Medicare. We also need to solve some of the issues around how we get international medical graduates here and ready to practice in the U.S. Twenty-five percent of practicing physicians in the U.S. were trained abroad. Most people don’t know that. We already have a huge international workforce, but we do silly things, like we’ll let an international doctor train their residency here, and then we make them go away for two years to their home country before they can come back. There are H-1B visa waiver bills that are circulating around the Conrad 30 extension. We need to do those things as well. Unfortunately, as you’re aware, immigration reform is a challenging issue here in Washington. But there are commonsense solutions that have bipartisan support. And we’re hopeful that we can get some workforce pressure reductions, not just by expanding GME for U.S.-trained individuals, but also those international graduates.
Rovner: Yeah, I feel like people forget that immigration is about more than just people coming across the southern border. There are a lot of skilled-worker issues in the immigration debate.
Ehrenfeld: In lots of industries, health care, technology, other places as well.
Rovner: I know the rise — or should I say the “re-rise” — of prior authorization requirements from insurance companies is something that contributes to physician burnout and the physician shortage by driving doctors out of practice, just from frustration. The Biden administration has a new regulation to limit prior authorization in the pipeline. Assuming that that regulation is finalized soon, how close will that come to fully addressing the problem for your members?
Ehrenfeld: You know, we hope it’ll move the needle a little bit, but we need wholesale reform, and we need to do more than Medicare Advantage plans. Unfortunately, I hear every week from colleagues who are just at their wits’ end, and it’s frustrating. I see it with my own parents. I’m an anesthesiologist. I have a habit now, I ask my patients: “So how long did it take your surgery to get scheduled?” Eh, it’s a couple weeks or a month. I said, “And how long did it take for your insurance company to approve the procedure?” And it’s months. And often what they tell me is they approved it, and then they denied it after they approved it. And they have to go through all of this rigmarole that just doesn’t make sense.
Rovner: You think that Congress is going to need to step in at some point, or is this something that can be worked out?
Ehrenfeld: I think we’re going to have to have regulatory relief from Congress, and we’re pushing for that through our grassroots network. Certainly, we try to bring all the third-party payers together. We have a set of principles that, theoretically, third-party payers have agreed to, and yet they ignore them, and they continue to just harass patients, really to improve their bottom line, but not doing what’s in their best interests.
Rovner: So I want to talk a little bit about physician autonomy. Since the overturn of Roe v. Wade, we’ve seen an increasing level of what I call legislators practicing medicine. Now we have the Supreme Court …
Ehrenfeld: It’s OK if they have an MD.
Rovner: [laughs] That’s true. Now we have the Supreme Court — none of whom have an MD as far as I know — about to decide whether doctors facing women with pregnancy emergencies should obey state abortion bans, the federal EMTALA law, or their medical ethics, all of which may conflict. What’s the AMA doing to help doctors navigate these very choppy and changing legal waters?
Ehrenfeld: “Choppy” is a good word for it. It’s confusing. And since the decision, the Dobbs decision, came out, we have been working with all of our state and federation partners to try to help physicians navigate this. And I can tell you, it’s unbelievable that now physicians are having to call their attorneys, the hospital legal counsel to figure out what they can and can’t do. And obviously, this is not a picture that is a picture that supports women’s health. So we are optimistic that we might get a positive ruling with this EMTALA decision on the Supreme Court. But, obviously, there’s a long way that we need to go to make sure that we can maintain access for reproductive care.
Rovner: You’re younger than I am, but when I was growing up and covering this, the AMA didn’t want to talk about abortion because it was controversial. And now, certainly in the last five or 10 years, the AMA has come out. Do you think that’s something that has dawned on the rest of the members of the AMA that this is not necessarily about abortion, this is about the ability to practice medicine?
Ehrenfeld: Well, you know, look, if you look at some of these socially charged restrictive laws, whether it’s in transgender health or abortion access, or other items, we take the same foundational approach, which is that physicians and patients ought to be making their health care decisions without legislative interference.
Rovner: So it’s not just abortion and reproductive health where lawmakers are trying to dictate medical practice but also care for transgender kids and adults and even treatment for covid and other infectious diseases. How big a priority is this for the AMA, and what are you doing to fight the sort of “pushing against” scientific discourse?
Ehrenfeld: Well, we will always stand up for science. And it’s so important that as an association we do that. Our foundation in 1847 was to get rid of quackery and snake oil salesmen in medicine. And yet here we are trying to do some of those same things with misinformation, disinformation. And obviously, even if you look at the attack on PrEP, preexposure prophylaxis for HIV prevention — you know, an important part of the Affordable Care Act, right? Making it basically zero out-of-pocket cost for many Americans — those things are just unconscionable. We have treatments. We know that they work. We ought to make sure that patients and their physicians can have access to them.
Rovner: What about doctors who are pushing things that you know to be not helpful?
Ehrenfeld: We call them out, and we would encourage others to call them out. If somebody is trying to sell something that’s inappropriate or do something that doesn’t follow the evidence, we need to call it for what it is, which is inappropriate.
Rovner: It’s not just legislators who want to practice medicine these days. We also have the rise of artificial intelligence, which I know promises both huge advances …
Ehrenfeld: I’m real, by the way.
Rovner: [both laugh] Yes, I can attest that you’re real. At least you seem real. But, obviously, our artificial intelligence can portend huge advances and also other issues, not all of which are good. How is the AMA trying to push the AMA more towards the former, the good things, and less towards the latter, the unintended consequences?
Ehrenfeld: Well, we’re really excited about it. I’m excited about it. I have an informatics background. So, you know, I believe that there is so much power that these technologies and tools can bring, but we need to make sure that the technology is an asset, not a burden. And we have all lived through the painful rollout of electronic health records where that just was not the case. So we did survey — we do routine surveys, data that’s a nationally representative sample — in August of this year, it’s on our website. An equal number of physicians are excited about AI as they are terrified about AI, anxious, concerned, right? And we need to make sure that we have the right regulatory framework. We’re very appreciative of the ONC [Office of the National Coordinator for Health Information Technology] rule that came out, out of HHS [the Department of Health and Human Services], at the end of last year. Certainly, the Biden administration’s, whole of government’s approach we think is important, but that is no substitution for regulation. And we need to make sure that we have appropriate regulation. The FDA doesn’t have the framework that they need. The system set up in the ’60s and ’70s for drugs and biologics and devices hasn’t held up. So we know that there have to be changes. We just need to make sure that those changes only let safe and effective algorithms, AI tools, AI-powered products come to the marketplace.
Rovner: Dr. Ehrenfeld, that’s all the time we have. Thank you so much for joining us.
Ehrenfeld: Oh, thanks for having me. It’s been a treat.
Rovner: OK, we are back. It’s time for our extra-credit segment. That’s when we each recommend a story we read this week we think you should read, too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Tami, why don’t you go first this week?
Luhby: OK. Well, my extra credit is titled “Most People Dropped in Medicaid ‘Unwinding’ Never Tried to Renew Coverage, Utah Finds,” by KFF Health News’ Phil Galewitz. And as many of our podcast listeners know, states are reviewing the eligibility of their residents in Medicaid and terminating the coverage of those they deem ineligible. Roughly 14.4 million people have been disenrolled. And the big question is, what has happened to them? Did they return to Medicaid? Did they find coverage elsewhere, or did they become uninsured? And that’s the question that many actually Medicaid directors have been unable to answer.
So Phil’s story looks at a first-of-its-kind study conducted in October by Utah’s Medicaid agency. And in Utah, 94% of those disenrolled were dropped for procedural reasons, such as not returning their paperwork, rather than being deemed ineligible. And the study found that 57% of respondents did not attempt to renew their Medicaid coverage. Thirty-nine percent shifted to employer plans, and 15% signed up for Affordable Care Act coverage. So they remained insured, but 30% became uninsured. The story also shows that many Medicaid enrollees said that they had trouble reapplying for Medicaid coverage. They didn’t get the documents. They didn’t have the necessary paperwork. They couldn’t get their questions answered. And these are all things that we’ve heard about anecdotally, but the Utah study and Phil’s story actually put some numbers to it. And interestingly, Utah officials also confirmed that the U.S. Department of Health and Human Services is conducting two audits of the state’s Medicaid unwinding. So we’ll see what happens and what we find out from Utah may inform us about what’s happening in the rest of the country.
Rovner: Yes, we have noted before that HHS has been very close-mouthed about how it is trying to get states to maintain coverage for these people who are, if not eligible for Medicaid anymore, eligible for something else. Alice, you have kind of a related story, so why don’t you go next?
Ollstein: Yeah, I have something from our own Rachel Cohrs at Stat. It’s called “Texas Taxpayers Wanted to Help the Poor Get Health Care. Instead They’re Funding a Medical School at a Wealthy University.” It’s a great accountability story about how taxpayers were convinced to put up tens of millions of dollars that they thought was going to provide care for very poor people in the area around Austin, Texas. And instead, basically, none of that money is going to … directly to provide that care to people. And instead, it’s gone to build fancy buildings at this medical school, and overhead, and recruiting faculty. And the school and hospital insist that all of this trickles down eventually to patients. But it’s not what taxpayers feel they were promised. And so they’re getting upset about that.
Rovner: It is a very nice medical school. Sarah.
Karlin-Smith: I looked at a New York Times story from Christina Jewett and Benjamin Mueller, “The F.D.A. Warned an Asthma Drug Could Induce Despair. Many Were Never Told,” and it’s about Singulair, a now generic asthma medicine. Over 20 years after it was first approved, FDA added what’s known as its strictest warning, a black box warning, warning of very serious mental health side effects, including suicidal thoughts. And The New York Times investigation seems to have found out that really these messages are not reaching doctors. They’re not reaching patients, or parents, and many young kids who are taking this medicine. And that has led to many ill effects, including some very young people who have died by suicide. And it’s a really good dive into the challenges that FDA faces and kind of translating their regulatory action into something that then gets communicated to a doctor, and then a doctor translates to a patient. In many ways, it’s not that surprising a story to me because I think it’s kind of well known that not a lot of people read drug labels and then certainly not on an individual level, but even on a doctor level. And I think a lot of the risk-benefit conversations that FDA envisions happen between doctors and patients before people take drugs don’t actually happen in the real world. I once actually had a doctor who told me, “This medicine has a box warning, but don’t worry about it.” Which I always find as a pretty funny story as a drug reporter. And it just also raises a lot of issues, this story, about how drugs are studied on children and what’s done to make sure that as a drug goes generic, the safety is still being monitored, and somebody is responsible again for ensuring people are aware of new safety updates. So it’s a really good dive. I think the thing I was most struck by, though, is I think the solutions perhaps here are not ones that would be very popular in the U.S., which is that by design, the FDA does not regulate the practice of medicine. And, in most cases, I don’t think Americans would want FDA pushing the boundaries much further to get at the safety hurdles this story maybe flags.
Rovner: Yeah. More along our theme of the federal government and its role in society. Well, my extra credit this week is actually a collection of stories. It’s sparked by the headline on this month’s issue of Consumer Reports, which is “How to Eat Less Plastic.” The first story is from CNN reporting on a study in the proceedings of the National Academy of Sciences called “Bottled Water Contains Thousands of Nanoplastics So Small They Can Invade the Body’s Cells, Study Says.” And it basically says that plastic sheds just like skin cells do. So anything you eat or drink that’s stored or wrapped in plastic is going to get into whatever it is you’re putting into your body. If that’s not enough to give you pause, my second story is from ScienceAlert, which is a website, called “It Turns Out Paper Straws Might Pose a Serious Problem Too.” And it’s about a study that found that many paper straws contain those forever chemicals we keep hearing about, called PFAS, which, of course, are also in many plastics. Finally, if that’s not enough plastic for you, here’s a story from The Washington Post called “How Plastic Hides in Supposedly Eco-Friendly Laundry Products.” Basically, those laundry sheets that can replace the use of all those plastic bottles that we keep seeing ads for? Apparently, even many of those sheets that claim to be, quote, “plastic-free” contains something called polyvinyl alcohol, which is, you guessed it, a plastic that’s been found in drinking water and breast milk. I think the message here is everything you do is probably bad for you in some way, so be humble and do the best you can.
OK, that is our show. As always, if you enjoy the podcast, you can subscribe wherever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our technical guru, Francis Ying, and our editor, my fellow happy Michigan Wolverine this week, Emmarie Huetteman. As always, you can email us your comments or questions. We’re at whatthehealth@kff.org, or you can still find me at X, @jrovner, or @julierovner at Bluesky and @julie.rovner at Threads. Sarah, where are you these days?
Karlin-Smith: I’m trying to be places, but then it’s hard to be at all of them. So mostly Twitter and Bluesky, @SarahKarlin or @sarahkarlin-smith.
Rovner: Tami?
Luhby: The best place to find me is cnn.com.
Rovner: There you go. Alice.
Ollstein: Still on X @AliceOllstein, and @alicemiranda on Bluesky.
Rovner: We will be back in your feed next week. Until then, be healthy.
Credits
Francis Ying
Audio producer
Emmarie Huetteman
Editor
To hear all our podcasts, click here.
And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Pocket Casts, or wherever you listen to podcasts.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
1 year 6 months ago
Courts, Elections, Health Care Costs, Health Industry, Medicaid, Medicare, Mental Health, Multimedia, Public Health, States, Abortion, Biden Administration, KFF Health News' 'What The Health?', Misinformation, Podcasts, Pregnancy, U.S. Congress, Women's Health
As Foundation for ‘Excited Delirium’ Diagnosis Cracks, Fallout Spreads
When Angelo Quinto’s family learned that officials blamed his 2020 death on “excited delirium,” a term they had never heard before, they couldn’t believe it. To them, it was obvious the science behind the diagnosis wasn’t real.
Related Links
-
Police Blame Some Deaths on ‘Excited Delirium.’ ER Docs Consider Pulling the Plug on the Term.
Oct 2, 2023
-
California Bans Controversial ‘Excited Delirium’ Diagnosis
Oct 12, 2023
-
Doctors Abandon a Diagnosis Used to Justify Police Custody Deaths. It Might Live On, Anyway.
Oct 16, 2023
Quinto, 30, had been pinned on the ground for at least 90 seconds by police in California and stopped breathing. He died three days later.
Now his relatives are asking a federal judge to exclude any testimony about “excited delirium” in their wrongful death case against the city of Antioch. Their case may be stronger than ever.
Their push comes at the end of a pivotal year for the long-standing, nationwide effort to discard the use of excited delirium in official proceedings. Over the past 40 years, the discredited, racially biased theory has been used to explain away police culpability for many in-custody deaths. But in October, the American College of Emergency Physicians disavowed a key paper that seemingly gave it scientific legitimacy, and the College of American Pathologists said it should no longer be cited as a cause of death.
That same month, California’s Democratic Gov. Gavin Newsom signed the nation’s first law to ban the term “excited delirium” as a diagnosis and cause of death on death certificates, autopsy reports, and police reports. Legislators in other states are expected to consider similar bills next year, and some law enforcement agencies and training organizations have dropped references to excited delirium from their policy manuals and pulled back from training police on the debunked theory.
Despite all that momentum, families, attorneys, policing experts, and doctors say much remains to be done to correct the mistakes of the past, to ensure justice in ongoing trials, and to prevent avoidable deaths in the future. But after years of fighting, they’re heartened to see any movement at all.
“This entire thing, it’s a nightmare,” said Bella Collins, Angelo’s sister. “But there are silver linings everywhere, and I feel so fortunate to be able to see change happening.”
Ultimately, the campaign against excited delirium seeks to transform the way police deal with people undergoing mental health crises.
“This is really about saving lives,” said Joanna Naples-Mitchell, an attorney who worked on an influential Physicians for Human Rights review of excited delirium.
Changing Law Enforcement Training
The use of the term “excited delirium syndrome” became pervasive after the American College of Emergency Physicians published a white paper on it in 2009. It proposed that individuals in a mental health crisis, often under the influence of drugs or alcohol, can exhibit superhuman strength as police try to control them, and then die suddenly from the condition, not the police response.
The ACEP white paper was significant in catalyzing police training and policy, said Marc Krupanski, director of criminal justice and policing at Arnold Ventures, one of the largest nonprofit funders of criminal justice policy. The theory contributed to deaths, he said, because it encouraged officers to apply greater force rather than call medical professionals when they saw people in aggressive states.
After George Floyd’s 2020 death, which officers blamed on excited delirium, the American Medical Association and the American Psychiatric Association formally rejected it as a medical condition. Then came disavowals from the National Association of Medical Examiners and the emergency physicians’ and pathologists’ groups this year.
The moves by medical societies to renounce the term have already had tangible, albeit limited, effects. In November, Lexipol, a training organization used by thousands of public safety agencies in the U.S., reiterated its earlier move away from excited delirium, citing the California law and ACEP’s retraction of the 2009 white paper.
Lexipol now guides officers to rely on what they can observe, and not to guess at a person’s mental status or medical condition, said Mike Ranalli, a lawyer and police trainer with the Texas-based group. “If somebody appears to be in distress, just get the EMS,” he said, referring to emergency medical services.
Patrick Caceres, a senior investigator at the Bay Area Rapid Transit’s Office of the Independent Police Auditor, successfully pushed to remove excited delirium from the BART Police Department’s policy manual after learning about Quinto’s death in 2020 and seeing the American Medical Association’s rejection of it the following year.
Caceres fears that rooting out the concept — not just the term — more broadly will take time in a country where law enforcement is spread across roughly 18,000 agencies governed by independent police chiefs or sheriffs.
“The kinds of training and the kinds of conversations that need to happen, we’re still a long way away from that,” said Caceres.
In Tacoma, Washington, where three police officers have been charged with the 2020 death of Manuel Ellis, The Seattle Times reported that local first responders testified as recently as October that they still “embrace” the concept.
But in Colorado, the state’s Peace Officer Standards and Training board ruled on Dec. 1 to drop excited delirium training for new law enforcement officers, KUSA-TV reported.
And two Colorado lawmakers, Democratic state Reps. Judy Amabile and Leslie Herod, have drafted a bill for the 2024 legislative session banning excited delirium from other police and EMS training and prohibiting coroners from citing it as a cause of death.
“This idea that it gives you superhuman strength causes the police to think they should respond in a way that is often completely inappropriate for what’s actually happening,” Amabile said. “It just seems obvious that we should stop doing that.”
She would like police to focus more on de-escalation tactics, and make sure 911 calls for people in mental health crisis are routed to behavioral health professionals who are part of crisis intervention teams.
Taking ‘Excited Delirium’ Out of the Equation
As the Quinto family seeks justice in the death of the 30-year-old Navy veteran, they are hopeful the new refutations of excited delirium will bolster their wrongful death lawsuit against the city of Antioch. On the other side, defense lawyers have argued that jurors should hear testimony about the theory.
On Oct. 26, the family cited both the new California law and the ACEP rebuke of the diagnosis when it asked a U.S. District Court judge in California to exclude witness testimony and evidence related to excited delirium, saying it “cannot be accepted as a scientifically valid diagnosis having anything to do with Quinto’s death.”
“A defense based on BS can succeed,” family attorney Ben Nisenbaum said. “It can succeed by giving jurors an excuse to give the cops a way out of this.”
Meanwhile, advocates are calling for a reexamination of autopsies of those who died in law enforcement custody, and families are fighting to change death certificates that blame excited delirium.
The Maryland attorney general’s office is conducting an audit of autopsies under the tenure of former chief medical examiner David Fowler, who has attributed various deaths to excited delirium. But that’s just one state reviewing a subset of its in-custody deaths.
The family of Alexander Rios, 28, reached a $4 million settlement with Richland County, Ohio, in 2021 after jail officers piled on Rios and shocked him until he turned blue and limp in September 2019. During a criminal trial against one of the officers that ended in a mistrial this November, the pathologist who helped conduct Rios’ autopsy testified that her supervisor pressured her to list “excited delirium” as the cause of death even though she didn’t agree. Still, excited delirium remains his official cause of death.
The county refused to update the record, so his relatives are suing to force a change to his official cause of death. A trial is set for May.
Changing the death certificate will be a form of justice, but it won’t undo the damage his death has caused, said Don Mould, Rios’ stepfather, who is now helping to raise one of Rios’ three children.
“Here is a kid that’s life is upside down,” he said. “No one should go to jail and walk in and not be able to walk out.”
In some cases, death certificates may be hard to refile. Quinto’s family has asked a state judge to throw out the coroner’s findings about his 2020 death. But the California law, which takes effect in January and bans excited delirium on death certificates, cannot be applied retroactively, said Contra Costa County Counsel Thomas Geiger in a court filing.
And, despite the 2023 disavowals by the main medical examiners’ and pathologists’ groups, excited delirium — or a similar explanation — could still show up on future autopsy reports outside California. No single group has authority over the thousands of individual medical examiners and coroners, some of whom work closely with law enforcement officials. The system for determining a cause of death is deeply disjointed and chronically underfunded.
“One of the unfortunate things, at least within forensic pathology, is that many things are very piecemeal,” said Anna Tart, a member of the Forensic Pathology Committee of the College of American Pathologists. She said that CAP plans to educate members through conferences and webinars but won’t discipline members who continue to use the term.
Justin Feldman, principal research scientist with the Center for Policing Equity, said that medical examiners need even more pressure and oversight to ensure that they don’t find other ways to attribute deaths caused by police restraint to something else.
Only a minority of deaths in police custody now cite excited delirium, he said. Instead, many deaths are being blamed on stimulants, even though fatal cocaine or methamphetamine overdoses are rare in the absence of opioids.
Yet advocates are hopeful that this year marks enough of a turning point that alternative terms will have less traction.
The California law and ACEP decision take “a huge piece of junk science out of the equation,” said Julia Sherwin, a California civil rights attorney who co-authored the Physicians for Human Rights report.
Sherwin is representing the family of Mario Gonzalez, who died in police custody in 2021, in a lawsuit against the city of Alameda, California. Excited delirium doesn’t appear on Gonzalez’s death certificate, but medical experts testifying for the officers who restrained him cited the theory in depositions.
She said she plans to file a motion excluding the testimony about excited delirium in that upcoming case and similar motions in all the restraint-asphyxia cases she handles.
“And, in every case, lawyers around the country should be doing that,” Sherwin said.
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
1 year 7 months ago
california, Mental Health, States, Colorado, Emergency Medicine, Legislation, Maryland, Ohio, Washington
El condado de Los Angeles ofrece terapia virtual gratuita de salud mental para estudiantes
LOS ANGELES – Las escuelas públicas del condado de Los Angeles han puesto en marcha una ambiciosa iniciativa para ofrecer servicios gratuitos de salud mental a sus 1,3 millones de estudiantes de primaria y secundaria (K-12), una prueba clave del amplio programa de $4,700 millones del gobernador de California, Gavin Newsom, para hacer frente a la crisis de salud mental entre los jóvenes.
Impulsado por los planes Medi-Cal del condado —que proporcionan seguro médico a los residentes con bajos ingresos— en colaboración con su Oficina de Educación y el Departamento de Salud Mental, el programa se basa en servicios de teleterapia proporcionados por Hazel Health, una de las empresas que han surgido para hacer frente a la escasez nacional de servicios de salud mental, algo que se agravó durante la pandemia de covid-19.
La teleterapia es uno de los cuatro proyectos del condado de Los Angeles que recibirán en conjunto hasta $83 millones del Programa de Incentivos de Salud Mental para Estudiantes del estado, uno de los componentes del “plan maestro” del gobernador demócrata para subsanar las deficiencias en el acceso de los jóvenes a los servicios de salud mental.
El contrato de Hazel Health en Los Angeles tiene como meta ayudar a las escuelas sobrecargadas a hacer frente al aumento de la demanda de estos servicios. Promete ser una iniciativa piloto para demostrar tanto la eficacia de la terapia virtual para los alumnos, como la capacidad de educadores y administradores para gestionar eficazmente un programa extenso y delicado en colaboración con una empresa con fines de lucro.
Para algunos educadores y familias los resultados iniciales son prometedores.
Anjelah Salazar, de 10 años, dijo que el especialista de Hazel la ha ayudado a sentirse mucho mejor. La estudiante de quinto grado empezó a sufrir ataques de pánico diarios al cambiar de escuela este año a la primaria Stanton de Glendora.
Su madre, Rosanna Chavira, contó que no sabía qué hacer —aunque es coordinadora clínica de una empresa que trata enfermedades mentales— y le preocupaba no poder pagar un terapeuta que aceptara su seguro. Cuando Chavira supo de Hazel, no lo dudó.
“El hecho de que sea gratis y de que un profesional le enseñe estrategias para sobrellevar distintas situaciones significa mucho”, dijo Chavira. “Ya se notan los resultados”.
Salazar dijo que hasta ahora tuvo cinco citas virtuales con su terapeuta. Una técnica de afrontamiento que aprecia especialmente es un ejercicio de tapping: todas las noches, antes de acostarse, se presiona con el dedo un poquito los ojos, las mejillas, el pecho y las rodillas. Con cada toque, dice: “Soy valiente”.
Christine Crone, madre de Brady, alumno de séptimo grado, afirmó que aún no ha comprobado si las sesiones son eficaces para su hijo, que estudia en Arroyo Seco Junior High en Santa Clarita, pero sí sabe que las disfruta.
“Normalmente le cuesta llegar a tiempo y estar preparado, pero con estas sesiones siempre deja lo que está haciendo y es puntual”, dijo Crone. “Dice que su terapeuta es agradable, divertido y que es fácil hablar con él”.
Jennifer Moya, consejera de salud mental en la escuela primaria Martha Baldwin de Alhambra, una ciudad al este de Los Angeles, dijo que a sus alumnos les gusta la flexibilidad de la teleterapia, que les permite reunirse con los terapeutas en cualquier momento entre las 7 de la mañana y las 7 de la tarde.
“Esta generación de niños ha crecido en la era digital”, señaló Moya, que se encarga de remitir a los alumnos a Hazel en su centro. “Les encanta que esto sea fácil”.
Pablo Isais, consejero de salud mental en la escuela primaria Granada’s Alhambra, dijo que los servicios también pueden ser una solución provisional mientras un estudiante espera una cita en persona, que puede tomar de seis a ocho semanas.
“Ser capaz de comunicarles que hay servicios disponibles a los que pueden acceder en la próxima semana es increíble”, dijo Moya.
Hasta ahora, sólo 607 estudiantes del condado de Los Angeles han participado en las sesiones desde que se ofrecieron por primera vez, en Compton, en diciembre de 2022, explicó Alicia Garoupa, jefa de servicios de bienestar y apoyo de la Oficina de Educación. Ella reconoció algunos problemas iniciales, pero aseguró que Hazel es “otra herramienta en nuestra caja de herramientas”.
El estado confía en las empresas con fines de lucro
La teleterapia desempeña un papel cada vez más importante en las escuelas del país, a medida que educadores y trabajadores sociales se enfrentan a la presión de abordar los crecientes problemas de salud mental. Según un informe de abril de Chalkbeat, 13 de los 20 distritos escolares más grandes del país, incluido Los Angeles Unified, la han incorporado desde que comenzó la pandemia.
El acuerdo del condado de Los Angeles con Hazel prevé el pago a la empresa de hasta $20 millones hasta finales de 2024. Además, Hazel puede facturar a los seguros de los estudiantes.
La empresa con sede en San Francisco, fundada en 2015, ha recaudado $112,5 millones de inversores y tiene contratos en 15 estados. Entre las empresas que buscan los dólares destinados para la salud mental de los jóvenes están otra startup de San Francisco, Daybreak Health, graduada de la prestigiosa incubadora tecnológica Y Combinator, junto con BeMe, Brightline y Kooth.
California eligió a Brightline y Kooth para una iniciativa estatal de $532 millones, en 2024, sobre servicios virtuales de comportamiento juvenil, otro componente importante del plan maestro de Newsom. Algunos programas estatales y locales se superponen, reconoció Naomi Allen, cofundadora y CEO de Brightline, pero dijo que la oferta de Brightline es más amplia que lo que Hazel hace en las escuelas, con servicios que incluyen desde sesiones de coaching para cuidadores hasta recursos de meditación.
“El estado financia el acceso gratuito a los servicios para todos los niños del estado, lo cual es un programa extraordinariamente ambicioso”, afirmó Allen.
Aún así, quedan muchos interrogantes sobre la eficacia de la teleterapia para estudiantes. Tampoco ha resultado ser una fuente de ingresos segura para las empresas: Brightline despidió al 20% de su plantilla la primavera pasada, la segunda ronda de despidos en seis meses.
Complemento, no solución
Chelsy Duffer-Dunbar, que en aquel momento trabajaba para Los Angeles Unified como trabajadora social psiquiátrica, declaró a KFF Health News en octubre que aún no había trabajado con Hazel, pero señaló que el condado exige que un miembro del personal permanezca a la vista del estudiante durante sus citas y le ayude si surgen problemas técnicos.
“Le sigue quitando tiempo al personal”, aseguró Duffer-Dunbar. “Mi día ya es muy estresante. No puedo imaginar tener una evaluación por amenaza y otra por suicidio en el trabajo y luego tener que buscar a alguien para que se siente en esta sesión de terapia con el niño o la niña y su iPad”.
Duffer-Dunbar añadió que quiere que el distrito dé prioridad a los terapeutas en persona que trabajan con la comunidad local, especialmente para los niños más pequeños que tienen problemas con la teleterapia.
Duffer-Dunbar ha dejado el distrito por recortes presupuestarios que la obligaban a desempeñar un trabajo más agobiante.
Hazel insistió en que la teleterapia no es una solución para todas las situaciones.
“Es una oportunidad para ampliar el acceso”, apuntó Andrew Post, jefe de innovación de la empresa.
Colaboración entre educación y salud
Fue necesaria una complicada colaboración entre los distritos escolares, las agencias del condado y los dos planes de Medi-Cal, L.A. Care Health Plan y Health Net, para poner en marcha el programa de terapia escolar. Las normas de financiación estatales se diseñaron para ayudar a las entidades a trabajar juntas.
“Este programa nos ha ayudado a acercarnos a los distritos escolares”, comentó Michael Brodsky, director de salud comunitaria de L.A. Care Health Plan. “Si podemos tratar a los niños cuando van a la escuela y derivarlos para que reciban tratamiento mientras están en la escuela, eso es bueno”.
Hazel ofrece principalmente sesiones de terapia individual de corta duración con trabajadores sociales clínicos u otros consejeros, el 40% de los cuales son bilingües. Son los más indicados para prestar apoyo temporal a quienes tienen necesidades leves o moderadas, como los estudiantes que luchan contra el estrés académico o empiezan en una escuela nueva, pero también pueden derivar a pacientes para que reciban atención a largo plazo.
El mayor distrito inscrito en el programa, Los Angeles Unified, cuenta con el 41% de los alumnos del condado, pero no todos los distritos están preparados para dar el salto. Cuatro de cada 10 distritos han optado por no ofrecer los servicios de Hazel, lo que Garoupa atribuye en parte a la preocupación por el intercambio de información sobre los estudiantes.
El contrato con Hazel termina en diciembre de 2024, pero Garoupa dijo que la Oficina de Educación y sus socios tienen la intención de mantener los servicios hasta junio de 2025. Cualquier prórroga posterior dependerá de los resultados.
Sonya Smith, colega de Garoupa, indicó que la Oficina de Educación evaluará la eficacia de Hazel a través de una encuesta anual, informes mensuales de impacto y reuniones semanales.
“El número de estudiantes que utilizan Hazel va a ser, obviamente, una medida clave”, añadió Smith. “La tasa de utilización de Hazel es del 3% al 8%. Evaluaremos si esas cifras se mantienen, si los estudiantes acceden a la atención en el momento oportuno y si alivia la carga del personal escolar y los proveedores comunitarios”.
Esta historia fue producida por KFF Health News, que publica California Healthline, un servicio editorialmente independiente de la California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
1 year 7 months ago
california, Mental Health, Noticias En Español, States, Children's Health, Latinos, Telemedicine
LA County Invests Big in Free Virtual Mental Health Therapy for K-12 Students
LOS ANGELES — Los Angeles County public schools are rolling out an ambitious effort to offer free mental health services to their 1.3 million K-12 students, a key test of California Gov. Gavin Newsom’s sweeping, $4.7 billion program to address a youth mental health crisis.
Spearheaded by the county’s Medi-Cal plans — which provide health insurance to low-income residents — in collaboration with its Office of Education and Department of Mental Health, the LA school program relies on teletherapy services provided by Hazel Health, one of a clutch of companies that have sprung up to address a nationwide shortage of mental health services that grew much worse during the covid-19 pandemic.
The teletherapy effort is one of four LA County projects that will collectively receive up to $83 million from the state’s Student Behavioral Health Incentive Program, one component of the Democratic governor’s “master plan” to address gaps in youth mental health care access.
LA’s Hazel Health contract is aimed at helping overburdened schools cope with a surge in demand for mental health services. It promises to be a telling case study in both the efficacy of virtual therapy for students and the ability of educators and administrators to effectively manage a sprawling and sensitive program in partnership with a for-profit company.
For some Los Angeles County educators and families, the initial results are promising.
Anjelah Salazar, 10, said her Hazel clinician has helped her feel a lot better. After the fifth grader switched to a new school this year, Stanton Elementary in Glendora, she started having panic attacks every day.
Her mom, Rosanna Chavira, said she didn’t know what to do — even though she’s a clinical coordinator for a company that treats mental health conditions — and worried she wouldn’t be able to find an affordable therapist who accepted their insurance. Once Chavira learned about Hazel, she jumped at the opportunity.
“This being free and having a licensed professional teaching her coping skills, it just means the world,” Chavira said. “You can already see changes.”
Salazar said she’s met with her virtual therapist five times so far. One coping technique that she especially appreciates is a tapping exercise: Every night before bed, she taps her eyes, her cheeks, her chest, and her knees. With each tap, she recites the same affirmation: “I am brave.”
Christine Crone, parent of seventh grader Brady, said she has yet to see if the sessions have been effective for her son, who attends Arroyo Seco Junior High in Santa Clarita, but she knows he enjoys them.
“He struggles normally with being on time and prepared, but with these sessions, he always stops what he is doing and makes sure he is logged in on time,” Crone said. “He says that his therapist is nice, fun, and easy to talk to.”
Jennifer Moya, a mental health counselor at Martha Baldwin Elementary in Alhambra, a city east of Los Angeles, said her students like the flexibility of teletherapy, which allows them to meet with clinicians anytime between 7 a.m. and 7 p.m.
“This generation of kids has grown up digital,” said Moya, who is in charge of referring students to Hazel at her school. “They love that this is easy.”
Pablo Isais, a mental health counselor at Alhambra’s Granada Elementary School, said the services can also be a stopgap while a student waits for an in-person appointment, which can take six to eight weeks.
“To be able to let them know that there are services available that they can access within the next week is amazing,” Moya said.
Thus far, early in the rollout, only 607 Los Angeles County students have participated in Hazel sessions since they were first offered, in Compton, in December 2022, said Alicia Garoupa, chief of well-being and support services for the Office of Education. She acknowledged some bumps in the rollout but said Hazel is “another tool in our toolbox.”
State Relies on For-Profit Ventures
Teletherapy is playing an increasingly important role in schools across the nation as educators and social workers face pressure to address growing mental health issues. According to an April Chalkbeat report, 13 of the nation’s 20 largest school districts, including Los Angeles Unified, have added teletherapy since the pandemic began.
LA County’s deal with Hazel calls for the company to be paid up to $20 million through the end of 2024. In addition, Hazel can bill students’ insurance.
The San Francisco-based company, founded in 2015, has raised $112.5 million from investors and has contracts in 15 different states. Other companies chasing youth mental health dollars include another San Francisco startup, Daybreak Health, a graduate of the prestigious Y Combinator tech incubator, along with BeMe, Brightline, and Kooth.
California chose Brightline and Kooth for a 2024 $532 million statewide initiative on virtual youth behavioral services, another important component of Newsom’s master plan. There is some overlap between the state and local programs, Brightline co-founder and CEO Naomi Allen acknowledged, but she said the Brightline offering is broader than what Hazel is doing in schools, with services including everything from coaching sessions for caregivers to meditation resources.
“The state is funding free access to services for every child in the state, which is just a remarkably ambitious program,” said Allen.
Still, many questions remain about the efficacy of teletherapy for students. It’s also proving to be no surefire moneymaker for the companies thus far: Brightline laid off 20% of its staff last spring, the second round of layoffs in six months.
Supplement, Not Solution
Chelsy Duffer-Dunbar, who at the time worked for Los Angeles Unified as a psychiatric social worker, told KFF Health News in October that she hadn’t yet worked with Hazel, but noted that the county requires that a member of staff stay within eyesight of the student during their appointments and assist if tech issues arise.
“It is still taking up staff time,” Duffer-Dunbar said. “My day is already so stressful. I can’t imagine having a threat assessment and a suicide assessment at work and then trying to scramble around to find someone to sit in on this therapy session with the kiddo and their iPad.”
Duffer-Dunbar said she wants the district to prioritize in-person clinicians who are immersed in the local community, especially for younger kids who have trouble engaging with teletherapy.
Duffer-Dunbar has since left the district in response to budget cuts that forced her into a more burdensome role.
Hazel emphasized that teletherapy is not a one-size-fits-all solution.
“It’s an opportunity to expand access,” said Andrew Post, chief of innovation at the company.
Education and Health Care Working Together
It took a complicated collaboration between school districts, county agencies, and the two Medi-Cal plans, L.A. Care Health Plan and Health Net, to set up the school therapy program. The state funding rules were designed to push the entities to work together.
“This program has helped us get closer to school districts,” said Michael Brodsky, senior medical director for community health at L.A. Care Health Plan. “If we can catch kids while they’re at school and refer them to get treatment while they’re in school, that’s good.”
Hazel provides primarily short-term one-to-one therapy sessions with clinical social workers or other licensed counselors, 40% of whom are bilingual. They are best suited to provide temporary support to those with mild to moderate needs, such as students struggling with academic stress or starting at a new school, but they can also make referrals for long-term care.
The largest district enrolled in the program, Los Angeles Unified, accounts for 41% of the county’s students, but not all districts are ready to take the leap. Four in 10 districts have opted to not offer Hazel’s services, which Garoupa attributes partially to data-sharing concerns.
The contract with Hazel ends in December 2024, but Garoupa said the Office of Education and its partners intend to maintain services through June 2025. Any extension beyond that will depend on the results.
Sonya Smith, a colleague of Garoupa’s, said the Office of Education will be continuously evaluating Hazel’s effectiveness through an annual survey, monthly impact reports, and weekly meetings.
“The number of students that are using Hazel is obviously going to be a key metric,” Smith said. “Hazel’s historic utilization rate is 3% to 8%. We’ll be evaluating if those numbers hold up, if students are accessing care in a timely manner, and if it’s lightening the burden for school staff and community-based providers.”
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
1 year 7 months ago
california, Mental Health, States, Children's Health, Latinos, Telemedicine
New mental health medicines website for young people
Saint John of God Hospital and youth website SpunOut have launched a new digital platform to provide accessible information about mental health medicines for younger people. Youthmed.info is a one-stop-source for younger people seeking reliable information on mental health medicines, including how they work, the…
The post New mental health medicines website for young people appeared first on Irish Medical Times.
1 year 8 months ago
News, medicines, Mental Health, Saint John of God Hospital, website
KFF Health News' 'What the Health?': Another Try for Mental Health ‘Parity’
The Host
Julie Rovner
KFF Health News
Julie Rovner is chief Washington correspondent and host of KFF Health News’ weekly health policy news podcast, “What the Health?” A noted expert on health policy issues, Julie is the author of the critically praised reference book “Health Care Politics and Policy A to Z,” now in its third edition.
The Biden administration continued a bipartisan, decades-long effort to ensure that health insurance treats mental illnesses the same as other ailments, with a new set of regulations aimed at ensuring that services are actually available without years-long waits or excessive out-of-pocket costs.
Meanwhile, two more committees in Congress approved bills this week aimed at reining in the power of pharmacy benefit managers, who are accused of keeping prescription drug prices high to increase their bottom lines.
This week’s panelists are Julie Rovner of KFF Health News, Anna Edney of Bloomberg, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Sarah Karlin-Smith of the Pink Sheet.
Panelists
Anna Edney
Bloomberg
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Sarah Karlin-Smith
Pink Sheet
Among the takeaways from this week’s episode:
- The Biden administration’s new rules to enforce federal mental health parity requirements include no threat of sanctions when health plans do not comply; noncompliance with even the most minimal federal rules has been a problem dating to the 1990s. Improving access to mental health care is not a new policy priority, nor a partisan one, yet it remains difficult to achieve.
- With the anniversary of the 988 Suicide & Crisis Lifeline, more people are becoming aware of how to access help and get it. Challenges remain, however, such as the hotline service’s inability to connect callers with local care. But the program seizes on the power of an initial connection for someone in a moment of crisis and offers a lifeline for a nation experiencing high rates of depression, anxiety, and suicide.
- In news about the so-called Medicaid unwinding, 12 states have paused disenrollment efforts amid concerns they are not following renewal requirements. A major consideration is that most people who are disenrolled would qualify to obtain inexpensive or even free coverage through the Affordable Care Act. But reenrollment can be challenging, particularly for those with language barriers or housing insecurity, for instance.
- With a flurry of committee activity, Congress is revving up to pass legislation by year’s end targeting the role of pharmacy benefit managers — and, based on the advertisements blanketing Washington, PBMs are nervous. It appears legislation would increase transparency and inform policymakers as they contemplate further, more substantive changes. That could be a tough sell to a public crying out for relief from high health care costs.
- Also on Capitol Hill, far-right lawmakers are pushing to insert abortion restrictions into annual government spending bills, threatening yet another government shutdown on Oct. 1. The issue is causing heartburn for less conservative Republicans who do not want more abortion votes ahead of their reelection campaigns.
- And the damage to a Pfizer storage facility by a tornado is amplifying concerns about drug shortages. After troubling problems with a factory in India caused shortages of critical cancer drugs, decision-makers in Washington have been keeping an eye on the growing issues, and a response may be brewing.
Also this week, Rovner interviews KFF Health News’ Céline Gounder about the new season of her “Epidemic” podcast. This season chronicles the successful public health effort to eradicate smallpox.
Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: The Nation’s “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality,” by Amy Littlefield.
Joanne Kenen: Food & Environment Reporting Network’s “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” by Gabriel Popkin.
Anna Edney: Bloomberg’s “Mineral Sunscreens Have Potential Hidden Dangers, Too,” by Anna Edney.
Sarah Karlin-Smith: CNN’s “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” by Brenda Goodman.
Also mentioned in this week’s episode:
- CNN’s “Medicaid Disenrollments Paused in a Dozen States After Failure to Comply With Federal Rules,” by Tami Luhby.
- Abortion, Every Day’s “Why Are OBGYNs Being Forced to Go to Texas?” by Jessica Valenti.
- Politico’s “GOP Looks to Spending Fights for Wins on Abortion, Trans Care, Contraception,” by Alice Miranda Ollstein.
- KFF Health News’ “A Year With 988: What Worked? What Challenges Lie Ahead,” by Colleen DeGuzman.
click to open the transcript
Transcript: Another Try for Mental Health ‘Parity’
KFF Health News’ ‘What the Health?’Episode Title: Another Try for Mental Health ‘Parity’Episode Number: 307Published: July 27, 2023
[Editor’s note: This transcript, generated using transcription software, has been edited for style and clarity.]
Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for KFF Health News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, July 27, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go. We are joined today via video conference by Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: Sarah Karlin-Smith, the Pink Sheet.
Sarah Karlin-Smith: Hi, Julie.
Rovner: And Anna Edney of Bloomberg News.
Edney: Hello.
Rovner: Later in this episode, we’ll have my interview with my KFF colleague Céline Gounder about the new season of her podcast “Epidemic,” which tracks one of the last great public health success stories, the eradication of smallpox. But first, this week’s news. I want to start this week with mental health, which we haven’t talked about in a while — specifically, mental health parity, which is both a law and a concept, that mental ailments should be covered and reimbursed by health insurance the same way as a broken bone or case of pneumonia or any other — air quotes — “physical ailment.” Policymakers, Republican and Democrat, and the mental health community have been fighting pretty much nonstop since the mid-1990s to require parity. And despite at least five separate acts of Congress over that time — I looked it up this week — we are still not there yet. To this day, patients with psychiatric illnesses find their care denied reimbursement, made difficult to access, or otherwise treated as lesser. This week, the Biden administration is taking another whack at the issue, putting out proposed rules it hopes will start to close the remaining parity gap, among other things by requiring health plans to analyze their networks and prior authorization rules and other potential barriers to care to ensure that members actually can get the care they need. What I didn’t see in the rules, though, was any new threat to sanction plans that don’t comply — because plans have been not complying for a couple of decades now. How much might these new rules help in the absence of a couple of multimillion-dollar fines?
Edney: I had that same question when I was considering this because I didn’t see like, OK, like, great, they’re going to do their self-policing, and then what? But I do think that there’s the possibility, and this has been used in health care before, of public shaming. If the administration gets to look over this data and in some way compile it and say, here’s the good guys, here’s the bad guys, maybe that gets us somewhere.
Rovner: You know, it strikes me, this has been going on for so very long. I mean, at first it was the employer community actually that did most of the negotiating, not the insurers. Now that it’s required, it’s the insurers who are in charge of it. But it has been just this incredible mountain to scale, and nobody has been able to do it yet.
Kenen: And it’s always been bipartisan.
Rovner: That’s right.
Kenen: And it really goes back to mostly, you know, the late Sen. [Paul] Wellstone [(D-Minn.)] and [Sen. Pete] Domenici [(R-N.M.)], both of whom had close relatives with serious mental illness. You know, Domenici was fairly conservative and traditional conservative, and Wellstone was extremely liberal. And they just said, I mean, this — the parity move began — the original parity legislation, at least the first one I’m aware of. And it was like, I think it was before I came to Washington. I think it was in the ’80s, certainly the early — by the ’90s.
Rovner: It was 1996 when when the first one actually passed. Yeah.
Kenen: I mean, they started talking about it before that because it took them seven or eight years. So this is not a new idea, and it’s not a partisan idea, and it’s still not done. It’s still not there.
Edney: I think there’s some societal shift too, possibly. I mean, we’re seeing it, and maybe we’re getting closer. I’ve seen a lot of billboards lately. I’ve done some work travel. When I’m on the road, I feel like I’m always seeing these billboards that are saying mental health care is health care. And trying to hammer that through has really taken a long time.
Rovner: So while we are on the subject of mental health, one of the good things I think the government has done in the last year is start the 988 Suicide & Crisis Lifeline, which turned 1 this month. Early data from shifting the hotline from a 10-digit number to a three-digit one that’s a lot easier to remember does suggest that more people are becoming aware of immediate help and more people are getting it. At the same time, it’s been able to keep up with the demand, even improving call answering times — I know that was a big concern — but there is still a long way to go, and this is hardly a panacea for what we know is an ongoing mental health crisis, right?
Karlin-Smith: This is a good first step to get people in crisis help without some of the risks that we’ve seen. If you go towards the 911 route, sometimes police are not well trained to handle these calls and they end in worse outcomes than necessary. But then you have to have that second part, which is what we were talking about before, which is the access to the longer-term mental health support to actually receive the treatment you need. There’s also some issues with this hotline going forward in terms of long-term funding and, you know, other tweaks they need to work out to make sure, again, that people who are not expecting to interact with law enforcement actually don’t end up indirectly getting there and things like that as well.
Kenen: Do any of you know whether there’s discussion of sort of making people who don’t remember it’s 988 and they call 911 — instead of dispatching cops, are the dispatchers being trained to just transfer it over to 988?
Rovner: That I don’t know.
Kenen: I’m not aware of that. But it just sort of seems common sense.
Rovner: One thing I know they’re working on is, right now I think there’s no geolocation. So when you call 988, you don’t necessarily get automatically referred to resources that are in your community because they don’t necessarily know where you’re calling from. And I know that’s an effort. But yeah, I’m sure there either is or is going to be some effort to interact between 988 and 911.
Kenen: It’s common sense to us. It doesn’t mean it’s actually happening. I mean, this is health care.
Rovner: As we point out, this is mental health care, too.
Kenen: Yeah, right.
Rovner: It’s a step.
Kenen: But I think that, you know, sort of the power of that initial connection is something that’s easy for people to underestimate. I mean, my son in college was doing a helpline during 2020-2021. You know, he was trained, and he was also trained, like, if you think this is beyond what a college-aged volunteer, that if you’re uncertain, you just switched immediately to a mental health professional. But sometimes it’s just, people feel really bad and just having a voice gets them through a crisis moment. And as we all know, there are a lot of people having a lot of crisis moments. I doubt any of us don’t know of a suicide in the last year, and maybe not in our immediate circle, but a friend of a friend, I mean, or, you know — I know several. You know, we are really at a moment of extreme crisis. And if a phone call can help some percentage of those people, then, you know, it needs to be publicized even more and improved so it can be more than a friendly voice, plus a connection to what, ending this repetition of crisis.
Rovner: I feel like the people who worked hard to get this implemented are pretty happy a year later at how, you know — obviously there’s further to go — but they’re happy with how far they’ve come. Well, so, probably the only thing worse than not getting care covered that should be is losing your health coverage altogether, which brings us to the Medicaid unwinding, as states redetermine who’s still eligible for Medicaid for the first time since the start of the pandemic. Our podcast colleague Tami Luhby over at CNN had a story Friday that I still haven’t seen anywhere else. Apparently 12 states have put their disenrollments on pause, says Tami. But we don’t know which 12, according to the KFF disenrollment tracker. As of Wednesday, July 26, at least 3.7 million people have been disenrolled from the 37 states that are reporting publicly, nearly three-quarters of those people for, quote, “procedural reasons,” meaning those people might still be eligible but for some reason didn’t complete the renewal process. The dozen states on pause are apparently ones that HHS [the Department of Health and Human Services] thinks are not following the renewal requirements and presumably ones whose disenrollments are out of line. The Centers for Medicare & Medicaid Services, which is overseeing this, is not naming those states, but this points up exactly what a lot of people predicted would happen when states started looking at eligibility again, that a lot of people who were quite likely still eligible were simply going to lose their insurance altogether, right?
Edney: Yeah, it seemed like there was a lot of preparation in some ways to anticipating this. And then, yeah, obviously you had the states that were just raring to go and try to get people off the rolls. And yeah, it would be very interesting to know what those 12 are. I think Tami’s reporting was stellar and she did a really good job. But that’s, like, one piece of the puzzle we’re missing. And I know CMS said that they’re not naming them because they are working well with them to try to fix it.
Rovner: The one thing we obviously do know is that there are several states that are doing this faster than is required — in fact, faster than is recommended. And what we know is that the faster they do it, the more likely they are going to have people sort of fall between the cracks. The people who are determined to be no longer eligible for Medicaid are supposed to be guided to programs for which they are eligible. And presumably most of them, unless they have, you know, gotten a really great job or hit the lottery, will still be eligible at least for subsidies under the Affordable Care Act. And they’re supposed to be guided to those programs. And it’s not clear yet whether that’s happening, although I know there are an awful lot of people who are watching this pretty closely. There were over 90 million people on Medicaid by the end of the pandemic, by the point at which states no longer had to keep people on. That’s a lot more people than Medicaid normally has. It’s usually more around 70 or even 80 million. So there’s excess people. And the question is what’s going to happen to those people and whether they’re going to have some sort of health insurance. And I guess it’s going to be more than a couple of months before we know that. Yes, Joanne.
Kenen: I think that it’s important to remember that there’s no open enrollment season for Medicaid the way there is for the ACA, so that if you’re disenrolled and you get sick and you go to a doctor or a hospital, they can requalify you and you can get it again. The problem is people who think that they’re disenrolled or are told that they’re disenrolled may not realize. They may not go to the doctor because they think they can’t afford it. They may not understand there’s a public education campaign there, too, that I haven’t seen. You know, if you get community health clinics, hospitals, they can do Medicare, Medicaid certification. But it’s dangerous, right? If you think, oh, I’m going to get a bill I can’t afford and I’m just going to see if I can tough this out, that’s not the way to take care of your health. So there’s that additional conundrum. And then, you know, I think that HHS can be flexible on special enrollment periods for those who are not Medicaid-eligible and are ACA-eligible, but most of them are still Medicaid-eligible.
Rovner: If you get kicked off of Medicaid, you get an automatic special enrollment for the ACA anyway.
Kenen: But not forever. If the issue is it’s in a language you don’t speak or at an address you don’t live in, or you just threw it out because you didn’t understand what it was — there is institutional failures in the health care system, and then there’s people have different addresses in three years, particularly poor people; they move around. There’s a communication gap. You know, I talked to a health care system a while ago in Indiana, a safety net, that was going through electronic health records and contacting people. And yet that’s Indiana and they, you know, I think it was Tami who pointed out a few weeks ago on the podcast, Indiana is not doing great, in spite of, you know, really more of a concerted effort than other states or at least other health systems, not that I talk to every single health system in the country. I was really impressed with how proactive they were being. And still people are falling, not just through the cracks. I mean, there’s just tons of cracks. It’s like, you know, this whole landscape of cracks.
Rovner: I think everybody knew this was going to be a big undertaking. And obviously the states that are trying to do it with some care are having problems because it’s a big undertaking. And the states that are doing it with a little bit less care are throwing a lot more people off of their health insurance. And we will continue to follow this. So it is the end of July. I’m still not sure how that happened.
Kenen: ’Cause after June, Julie.
Rovner: Yes. Thank you. July is often when committees in Congress rush to mark up bills that they hope to get to the floor and possibly to the president in that brief period when lawmakers return from the August recess before they go out for the year, usually around Thanksgiving. This year is obviously no exception. While Sen. Bernie Sanders [(I-Vt.)] at the Health, Education, Labor and Pensions Committee has delayed consideration of that primary care-community health center bill that we talked about last week until September, after Republicans rebelled against what was supposed to have been a bipartisan bill, committee action on pharmacy benefit managers and other Medicare issues did take place yesterday in the Senate Finance Committee and the House Ways and Means Committee. Sarah, you’re following this, right? What’s happening? And I mean, so we’ve now had basically all four of the committees that have some kind of jurisdiction over this who’ve acted. Is something going to happen on PBM regulation this year?
Karlin-Smith: Actually, five committees have acted because the House Ed[ucation] and Workforce Committee has also acted on the topic. So there’s a lot of committees with a stake in this. I think there’s certainly set up for something for the fall, end of the year, to happen in the pharmacy benefit manager space. And there’s a decent amount of bipartisanship around the issue, depending on exactly which committee you’re looking at. But even if the policies that haven’t gotten through haven’t been bipartisan, I think there’s general bipartisan interest among all the committees of tackling the issue. The question is how meaningful, I guess, the policies that we get done are. Right now it looks like what we’re going to end up with is some kind of transparency measure. It reminded me a little bit of our discussion of the mental health stuff [President Joe] Biden is doing going forward. Essentially what it’s going to end up doing is get the government a lot of detailed data about how PBMs operate, how this vertical integration of PBMs — so there’s a lot of common ownership between PBMs, health insurance plans, pharmacies and so forth — may be impacting the cost of our health care and perhaps in a negative way. And then from that point, the idea would be that later Congress could go back and actually do the sort of policy reforms that might be needed. So I know there are some people that are super excited about this transparency because it is such an opaque industry. But at the same point, you can’t kind of go to your constituents and say, “We’ve changed something,” right away or, you know, “We’re going to save you a ton of money with this kind of legislation.”
Rovner: You could tell how worried the PBMs are by how much advertising you see, if you still watch TV that has advertising, which I do, because I watch cable news. I mean, the PBMs are clearly anxious about what Congress might do. And given the fact that, as you point out and as we’ve been saying for years, drug prices are a very bipartisan issue — and it is kind of surprising, like mental health, it’s bipartisan, and they still haven’t been able to push this as far as I think both Democrats and Republicans would like for it to go. Is there anything in these bills that surprised you, that goes further than you expected or less far than expected?
Karlin-Smith: There’s been efforts to sort of delink PBM compensation from rebates. And in the past, when Congress has tried to look into doing this, it’s ended up being extremely costly to the government. And they figured out in this set of policies sort of how to do this without those costs, which is basically, they’re making sure that the PBMs don’t have this perverse incentive to make money off of higher-priced drugs. However, the health plans are still going to be able to do that. So it’s not clear how much of a benefit this will really be, because at this point, the health plans and the PBMs are essentially one and the same. They have the same ownership. But, you know, I do think there has been some kind of creativity and thoughtfulness on Congress’ part of, OK, how do we tackle this without also actually increasing how much the government spends? Because the government helps support a lot of the premiums in these health insurance programs.
Rovner: Yeah. So the government has quite a quite a financial stake in how this all turns out. All right. Well, we will definitely watch that space closely. Let us move on to abortion. In addition to it being markup season for bills like PBMs, it’s also appropriations season on Capitol Hill, with the Sept. 30 deadline looming for a completion of the 12 annual spending bills. Otherwise, large parts of the government shut down, which we have seen before in recent years. And even though Democrats and Republicans thought they had a spending detente with the approval earlier this spring of legislation to lift the nation’s debt ceiling, Republicans in the House have other ideas; they not only want to cut spending even further than the levels agreed to in the debt ceiling bill, but they want to add abortion and other social policy riders to a long list of spending bills, including not just the one for the Department of Health and Human Services but the one for the Food and Drug Administration, which is in the agriculture appropriations, for reasons I’ve never quite determined; the financial services bill, which includes funding for abortion in the federal health insurance plan for government workers; and the spending bill for Washington, D.C., which wants to use its own taxpayer money for abortion, and Congress has been making that illegal pretty much for decades. In addition to abortion bans, conservatives want riders to ban gender-affirming care and even bar the FDA from banning menthol cigarettes. So it’s not just abortion. It’s literally a long list of social issues. Now, this is nothing new. A half a dozen spending bills have carried a Hyde [Amendment] type of abortion ban language for decades, as neither Republicans nor Democrats have had the votes to either expand or take away the existing restrictions. On the other hand, these conservatives pushing all these new riders don’t seem to care if the government shuts down if these bills pass. And that’s something new, right?
Kenen: Over abortion it’s something new, but they haven’t cared. I mean, they’ve shut down the government before.
Rovner: That’s true. The last time was over Obamacare.
Kenen: Right. And, which, the great irony is the one thing they — when they shut down the government because Obamacare was mandatory, not just discretionary funding, Obamacare went ahead anyway. So, I mean, minor details, but I think this is probably going to be an annual battle from now on. It depends how hard they fight for how long. And with some of these very conservative, ultra-conservative lawmakers, we’ve seen them dig in on abortion, on other issues like the defense appointees. So I think it’s going to be a messy October.
Rovner: Yeah, I went back and pulled some of my old clips. In the early 1990s I used to literally keep a spreadsheet, and I think that’s before we had Excel, of which bill, which of the appropriations bills had abortion language and what the status was of the fights, because they were the same fights year after year after year. And as I said, they kind of reached a rapprochement at one point, or not even a rapprochement — neither side could move what was already there. At some point, they kind of stopped trying, although we have seen liberals the last few years try to make a run at the actual, the original Hyde Amendment that bans federal funding for most abortions — that’s in the HHS bill — and unsuccessfully. They have not had the votes to do that. Presumably, Republicans don’t have the votes now to get any of these — at least certainly not in the Senate — to get any of these new riders in. But as we point out, they could definitely keep the government closed for a while over it. I mean, in the Clinton administration, President [Bill] Clinton actually had to swallow a bunch of new riders because either it was that or keep the government closed. So that’s kind of how they’ve gotten in there, is that one side has sort of pushed the other to the brink. You know, everybody seems to assume at this point that we are cruising towards a shutdown on Oct. 1. Does anybody think that we’re not?
Kenen: I mean, I’m not on the Hill anymore, but I certainly expect a shutdown. I don’t know how long it lasts or how you resolve it. And I — even more certain we’ll have one next year, which, the same issues will be hot buttons five weeks before the elections. So whatever happens this year is likely to be even more intense next year, although, you know, next year’s far away and the news cycle’s about seven seconds. So, you know, I think this could be an annual fight and for some time to come, and some years will be more intense than others. And you can create a deal about something else. And, you know, the House moderates are — there are not many moderates — but they’re sort of more traditional conservatives. And there’s a split in the Republican Party in the House, and we don’t know who’s going to fold when, and we don’t — we haven’t had this kind of a showdown. So we don’t really know how long the House will hold out, because some of the more moderate lawmakers who are — they’re all up for reelection next year. I mean, some of them don’t agree. Some of are not as all or nothing on abortion as the —
Rovner: Well, there are what, a dozen and a half Republicans who are in districts that President Biden won who do not want to vote on any of these things and have made it fairly clear to their leadership that they do not want to vote on any of these things. But obviously the conservatives do.
Kenen: And they’ve been public about that. They’ve said it. I mean, we’re not guessing. Some of them spoke up and said, you know, leave it to the states. And that’s what the court decided. And they don’t want to nationalize this even further than it’s nationalized. And I think, you know, when you have the Freedom Caucus taking out Marjorie Taylor Greene, I mean, I have no idea what’s next.
Rovner: Yeah, things are odd. Well, I want to mention one more abortion story this week that I read in the newsletter “Abortion, Every Day,” by Jessica Valenti. And shoutout here: If you’re interested in this issue and you don’t subscribe, you’re missing out. I will include the link in the show notes. The story’s about Texas and the exam to become a board-certified obstetrician-gynecologist. The board that conducts the exam is based in Dallas and has been for decades, and Texas is traditionally where this test has been administered. During the pandemic, the exam was given virtually because nothing was really in person. But this year, if a doctor wants to become board-certified, he or she will have to travel to Texas this fall. And a lot of OB-GYNs don’t want to do that, for fairly obvious reasons, like they are afraid of getting arrested and sent to prison because of Texas’ extreme anti-abortion laws. And yikes, really, this does not seem to be an insignificant legal risk here for doctors who have been performing abortions in other states. This is quite the dilemma, isn’t it?
Karlin-Smith: Well, the other thing I thought was interesting about — read part of that piece — is just, she was pointing out that you might not just want to advertise in a state where a lot of people are anti-abortion that all of these people who perform abortions are all going to be at the same place at the same time. So it’s not just that they’re going to be in Texas. Like, if anybody wants to go after them, they know exactly where they are. So it can create, if nothing else, just like an opportunity for big demonstrations or interactions that might disrupt kind of the normal flow of the exam-taking.
Kenen: Or violence. Most people who are anti-abortion are obviously not violent, but we have seen political violence in this country before. And you just need one person, which, you know, we seem to have plenty of people who are willing to shoot at other people. I thought it was an excellent piece. I mean, I had not come across that before until you sent it around, and there’s a solution — you know, like, if you did it virtually before — and I wasn’t clear, or maybe I just didn’t pay attention: Was this certification or also recertification?
Rovner: No, this was just certification. Recertification’s separate. So these are these are young doctors who want to become board-certified for the first time.
Kenen: But the recertification issues will be similar. And this is a yearly — I mean, I don’t see why they just don’t give people the option of doing it virtual.
Rovner: But we’ll see if they back down. But you know, I had the same thought that Sarah did. It’s like, great, let’s advertise that everybody’s going to be in one place at one time, you know, taking this exam. Well, we’ll see how that one plays out. Well, finally this week, building on last week’s discussion on health and climate change and on drug shortages, a tornado in Rocky Mount, North Carolina, seriously damaged a giant Pfizer drug storage facility, potentially worsening several different drug shortages. Sarah, I remember when the hurricane in Puerto Rico seemed to light a fire under the FDA and the drug industry about the dangers of manufacturing being too centralized in one place. Now we have to worry about storage, too? Are we going to end up, like, burying everything underground in Fort Knox?
Karlin-Smith: I think there’s been a focus even since before [Hurricane] Maria, but that certainly brought up that there’s a lack of redundancy in U.S. medical supply chains and, really, global supply chains. It’s not so much that they need to be buried, you know, that we need bunkers. It’s just that — Pfizer had to revise the numbers, but I think the correct number was that that facility produces about 8% of the sterile kind of injectables used in the U.S. health system, 25% of all Pfizer’s — it’s more like each company or the different plants that produce these drugs, it needs to be done in more places so that if you have these severe weather events in one part of the country, there’s another facility that’s also producing these drugs or has storage. So I don’t know that these solutions need to be as extreme as you brought up. But I think the problem has been that when solutions to drug shortages have come up in Congress, they tend to focus on FDA authorities or things that kind of nibble around the edges of this issue, and no one’s ever really been able to address some of the underlying economic tensions here and the incentives that these companies have to invest in redundancy, invest in better manufacturing quality, and so forth. Because at the end of the day these are often some of the oldest and cheapest drugs we have, but they’re not necessarily actually the easiest to produce. While oftentimes we’re talking about very expensive, high-cost drugs here, this may be a case where we have to think about whether we’ve let the prices drop too low and that’s sort of keeping a market that works if everything’s going perfectly well but then leads to these shortages and other problems in health care.
Rovner: Yeah, the whole just-in-time supply chain. Well, before we leave this, Anna, since you’re our expert on this, particularly international manufacturing, I mean, has sort of what’s been happening domestically lit a fire under anybody who’s also worried about some of these, you know, overseas plants not living up to their safety requirements?
Edney: Well, I think there are these scary things happen like a tornado or hurricane and everybody is kind of suddenly paying attention. But I think that the decision-makers in the White House or on Capitol Hill have been paying attention a little bit longer. We’ve seen these cancer — I mean, for a long time not getting anything done, as Sarah mentioned — but recently, it’s sort of I think the initial spark there was these cancer drug shortages that, you know, people not being able to get their chemo. And that was from an overseas factory; that was from a factory in India that had a lot of issues, including shredding all of their quality testing documents and throwing them in a truck, trying to get it out of there before the FDA inspectors could even see it.
Kenen: That’s always very reassuring.
Edney: It is. Yeah. It makes you feel really good. And one bag did not make it out of the plant in time, so they just threw acid on it instead of letting FDA inspectors look at it. So it’s definitely building in this tornado. And what might come out of it if there are a lot of shortages, I haven’t seen huge concern yet from the FDA on that front. But I think that it’s something that just keeps happening. It’s not letting up. And, you know, my colleagues did a really good story yesterday. There’s a shortage of a certain type of penicillin you give to pregnant people who have syphilis. If you pass syphilis on to your baby, the baby can die or be born with a lot of issues — it’s not like if an adult gets syphilis — and they’re having to ration it, and adults aren’t getting treated fully for syphilis because the babies need it more so, and so this is like a steady march that just keeps going on. And there’s so many issues with the industry, sort of how it’s set up, what Sarah was talking about, that we haven’t seen anybody really be able to touch yet.
Rovner: We will continue to stay on top of it, even if nobody else does. Well, that is this week’s news. Now we will play my interview with KFF’s Céline Gounder, and then we will come back and do our extra credit. I am pleased to welcome back to the podcast Dr. Céline Gounder, KFF senior fellow and editor-at-large for public health, as well as an infectious disease specialist and epidemiologist in New York and elsewhere. Céline is here today to tell us about the second season of her podcast, “Epidemic,” which tells the story of the successful effort to eradicate smallpox and explores whether public health can accomplish such big things ever again. Céline, thank you for joining us.
Céline Gounder: It’s great to be here, Julie.
Rovner: So how did you learn about the last steps in the journey to end smallpox, and why did you think this was a story worth telling broadly now?
Gounder: Well, this is something I actually studied back when I was in college in the ’90s, and I did my senior thesis in college on polio eradication, and this was in the late ’90s, and we have yet to eradicate polio, which goes to show you how difficult it is to eradicate an infectious disease. And in the course of doing that research, I was an intern at the World Health Organization for a summer and then continued to do research on it during my senior year. I also learned a lot about smallpox eradication. I got to meet a lot of the old leaders of that effort, folks like D.A. Henderson and Ciro de Quadros. And fast-forward to the present day: I think coming out of covid we’re unfortunately not learning what at least I think are the lessons of that pandemic. And I think sometimes it’s easier to go back in time in history, and that helps to depoliticize things, when people’s emotions are not running as high about a particular topic. And my thought was to go back and look at smallpox: What are the lessons from that effort, a successful effort, and also to make sure to get that history while we still have some of those leaders with us today.
Rovner: Yes, you’re singing my song here. I noticed the first episode is called “The Goddess of Smallpox.” Is there really a goddess of smallpox?
Gounder: There is: Shitala Mata. And the point of this episode was really twofold. One was to communicate the importance of understanding local culture and beliefs, not to dismiss these as superstitions, but really as ways of adapting to what was, in this case, a very centuries-long reality of living with smallpox. And the way people thought about it was that in some ways it was a curse, but in some ways it was also a blessing. And understanding that dichotomy is also important, whether it’s with smallpox or other infectious diseases. It’s important to understand that when you’re trying to communicate about social and public health interventions.
Rovner: Yeah, because I think people don’t understand that public health is so unique to each place. I feel like in the last 50 years, even through HIV and other infectious diseases, the industrialized world still hasn’t learned very well how to deal with developing countries in terms of cultural sensitivity and the need for local trust. Why is this a lesson that governments keep having to relearn?
Gounder: Well, I would argue we don’t even do it well in our own country. And I think it’s because we think of health in terms of health care, not public health, in the United States. And that also implies a very biomedical approach to health issues. And I think the mindset here is very much, oh, well, once you have the biomedical tools — the vaccines, the diagnostics, the drugs — problem solved. And that’s not really solving the problem in a pandemic, where much of your challenge is really social and political and economic and cultural. And so if you don’t think about it in those terms, you’re really going to have a flat-footed response.
Rovner: So what should we have learned from the smallpox eradication effort that might have helped us deal with covid or might help us in the future deal with the next pandemic?
Gounder: Well, I think one side of this is really understanding what the local culture was, spending time with people in community to build trust. I think we came around to understanding it in part, in some ways, in some populations, in some geographies, but unfortunately, I think it was very much in the crisis and not necessarily a long-term concerted effort to do this. And that I think is concerning because we will face other epidemics and pandemics in the future. So, you know, how do you lose trust? How do you build trust? I think that’s a really key piece. Another big one is dreaming big. And Dr. Bill Foege — he was one of the leaders of smallpox eradication, went on to be the director of the CDC [Centers for Disease Control and Prevention] under President [Jimmy] Carter — one of the pieces of advice he’s given to me as a mentor over the years is you’ve got to be almost foolishly optimistic about getting things done, and don’t listen to the cynics and pessimists. Of course, you want to be pragmatic and understand what will or won’t work, but to take on such huge endeavors as eradicating smallpox, you do have to be very optimistic and remind yourself every day that this is something you can do if you put your mind to it.
Rovner: I noticed, at least in the first couple of episodes that I’ve listened to, the media doesn’t come out of this looking particularly good. You’re both a journalist and a medical expert. What advice do you have for journalists trying to cover big public health stories like this, like covid, like things that are really important in how you communicate this to the public?
Gounder: Well, I think one is try to be hyperlocal in at least some of your reporting. I think one mistake during the pandemic was having this very top-down perspective of “here is what the CDC says” or “here is what the FDA says” or whomever in D.C. is saying, and that doesn’t really resonate with people. They want to see their own experiences reflected in the reporting and they want to see people from their community, people they trust. And so I think that is something that we should do better at. And unfortunately, we’re also somewhat hampered in doing so because there’s been a real collapse of local journalism in most of the country. So it really does fall to places like KFF Health News, for example, to try to do some of that important reporting.
Rovner: We will all keep at it. Céline Gounder, thank you so much for joining us. You can find Season 2 of “Epidemic,” called “Eradicating Smallpox,” wherever you get your podcasts.
Gounder: Thanks, Julie.
Rovner: OK, we’re back. It’s time for our extra credit segment. That’s when we each recommend a story we read this week we think you should read too. As always, don’t worry if you miss it. We will post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Sarah, why don’t you go first this week?
Karlin-Smith: Sure. I took a look at a piece from Brenda Goodman at CNN called “They Took Blockbuster Drugs for Weight Loss and Diabetes. Now Their Stomachs Are Paralyzed,” and it’s a really good deep dive into — people probably have heard of Ozempic, Wegovy — these what are called GLP-1 drugs that have been used for diabetes. And we’ve realized in higher doses even for people without diabetes, they often are very helpful at losing weight, that that’s partially because they slow the passage of food through your stomach. And there are questions about whether for some people that is leading to stomach paralysis or other extreme side effects. And I think it’s a really interesting deep dive into the complicated world of figuring out, Is this caused by the drug? Is it caused by other conditions that people have? And then how should you counsel people about whether they should receive the drugs and the benefits outweighing the risks? So I think it’s like just a good thing for people to read when you sort of hear all this hype about a product and how great they must be, that it’s always a little bit more complicated than that. And it also brought up another aspect of it, which is how these drugs may impact people who are going to get surgery and anesthesia and just the importance of communicating this to your doctor so they know how to appropriately handle the drugs. Because if you still have food content in your stomach during a surgery, that can be extremely dangerous. And I thought just that aspect alone of this story is really interesting, because they talk about people maybe not wanting to even let their doctors know they’re on these drugs because of stigma surrounding weight loss. And just again, once you get a new medicine that might end up being taken by a lot of people, the complications or, you know, there’s the dynamics of how it impacts other parts of medicine, and we need to adjust.
Rovner: Yeah. And I think the other thing is, you know, we know these drugs are safe because people with diabetes have been taking them for, what, six or seven years. But inevitably, anytime you get a drug that lots more people take, then you start to see the outlier side effects, which, if it’s a lot of people, can affect a lot of people. Joanne.
Kenen: I have a piece from FERN, which is the Food & Environment Reporting Network and in partnership with Yale Environ 360, and it’s by Gabriel Popkin. And it’s called “Can Biden’s Climate-Smart Agriculture Program Live Up to the Hype?” And I knew nothing about smart agriculture, which is why I found this so interesting. So, this is an intersection of climate change and food, which is obviously also a factor in climate change. And there’s a lot of money from the Biden administration for farmers to use new techniques that are more green-friendly because as we all know, you know, beef and dairy, things that we thought were just good for us — maybe not beef so much — but, like, they’re really not so good for the planet we live on. So can you do things like, instead of using fertilizer, plant cover crops in the offseason? I mean, there’s a whole list of things that — none of us are farmers, but there’s also questions about are they going to work? Is it greenwashing? Is it stuff that will work but not in the time frame that this program is funding? How much of it’s going to go to big agribusiness, and how much of it is going to go to small farmers? So it’s one hand, it’s another. You know, there’s a lot of low-tech practices. We’re going to have to do absolutely everything we can on climate. We’re going to have to use a variety of — you know, very large toolkit. So it was interesting to me reading about these things that you can do that make agriculture, you know, still grow our food without hurting the planet, but also a lot of questions about, you know, is this really a solution or not? But, you know, I didn’t know anything about it. So it was a very interesting read.
Rovner: And boy, you think the drug companies are influential on Capitol Hill. Try going with big agriculture. Anna.
Edney: I’m going to toot my own horn for a second here —
Rovner: Please.
Edney: — and do one of my mini-investigations that I did, “Mineral Sunscreens Have Potential Hidden Dangers, Too.” So there’s been a lot of talk: Use mineral sunscreen to save the environment or, you know, for your own health potentially. But they’re white, they’re very thick. And, you know, people don’t want to look quite that ghostly. So what’s been happening lately is they’ve been getting better. But what I found out is a lot of that is due to a chemical — that is what people are trying to move away from, is chemical sunscreens — but the sunscreen-makers are using this chemical called butyloctyl salicylate. And you can read the article for kind of the issues with it. I guess the main one I would point out is, you know, I talked to the Environmental Working Group because they do these verifications of sunscreens based on their look at how good are they for your health, and a couple of their mineral ones had this ingredient in it. So when I asked them about it, they said, Oh, whoops; like, we do actually need to revisit this because it is a chemical that is not recommended for children under 4 to be using on their bodies. So there’s other issues with it, too — just the question of whether you’re really being reef-safe if it’s in there, and other things as well.
Rovner: It is hard to be safe and be good to the planet. My story this week is by Amy Littlefield of The Nation magazine, and it’s called “The Anti-Abortion Movement Gets a Dose of Post-Roe Reality.” It’s about her visit to the annual conference of the National Right to Life Committee, which for decades was the nation’s leading anti-abortion organization, although it’s been eclipsed by some others more recently. The story includes a couple of eye-opening observations, including that the anti-abortion movement is surprised that all those bans didn’t actually reduce the number of abortions by very much. As we know, women who are looking for abortions normally will find a way to get them, either in state or out of state or underground or whatever. And we also learned in this story that some in the movement are willing to allow rape and incest exceptions in abortion bills, which they have traditionally opposed, because they want to use those as sweeteners for bills that would make it easier to enforce bans, stronger bans, things like the idea in Texas of allowing individual citizens to use civil lawsuits and forbidding local prosecutors from declining to prosecute abortion cases. We’re seeing that in some sort of blue cities in red states. It’s a really interesting read and I really recommend it. OK. That is our show for this week. As always, if you enjoyed the podcast, you can subscribe where ever you get your podcasts. We’d appreciate it if you left us a review; that helps other people find us, too. Special thanks, as always, to our producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can tweet me. I’m @jrovner, and I’m on Bluesky and Threads. Joanne.
Kenen: @joannekenen1 at Threads.
Rovner: Sarah.
Karlin-Smith: I’m @SarahKarlin or @sarah.karlinsmith, depending on which of these many social media platforms you’re looking at, though.
Rovner: Anna.
Edney: @annaedney on Twitter and @anna_edneyreports on Threads.
Rovner: You can always find us here next week where we will always be in your podcast feed. Until then, be healthy.
Credits
Francis Ying
Audio producer
Emmarie Huetteman
Editor
To hear all our podcasts, click here.
And subscribe to KFF Health News’ “What the Health?” on Spotify, Apple Podcasts, Stitcher, Pocket Casts, or wherever you listen to podcasts.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
2 years 6 days ago
Capitol Desk, Health Care Costs, Health Care Reform, Health Industry, Insurance, Medicaid, Medicare, Mental Health, Multimedia, Pharmaceuticals, Public Health, Abortion, KFF Health News' 'What The Health?', Legislation, Podcasts, Prescription Drugs, texas, vaccines, Women's Health
News Archives - Healthy Caribbean Coalition
Launch of the 2023 Bridgetown Declaration on NCDs and Mental Health
The Healthy Caribbean Coalition was delighted with the endorsement of the 2023 Bridgetown Declaration on Non-communicable Diseases and Mental Health.
The Healthy Caribbean Coalition was delighted with the endorsement of the 2023 Bridgetown Declaration on Non-communicable Diseases and Mental Health. The Bridgetown Declaration, developed by SIDS for SIDS, was prepared by co-chairs Barbados’ Ambassador and Permanent Representative to the United Nations and other International Organisations in Geneva, Matthew Wilson, and Ambassador of Fiji, Luke Daunivalu with inputs from SIDS member states and other SIDS stakeholders including civil society through extensive consultation. HCC and NCD ALLIANCE, in support of the process, developed a discussion paper, and participated in the consultative process.
A Response to the pre-final declaration was also developed which can be found here. HCC applauds this impressive political document, which contains strong language on: commercial determinants of health (CDOH) and associated actions to address the CDOH; strengthening and integration of mental health across NCD services; prioritization of childhood obesity prevention; implementation of WHO, Best Buy’s and recommended interventions; strengthening, climate resilient health systems; innovative NCD financing; meaningful engagement of people living with NCDs, young people, and other key groups; and strengthening pathways and mechanisms for inter SIDS collaboration across all sectors – to highlight a few areas.
The Declaration is a bold and ambitious political action-oriented document, uniquely containing two annexes dedicated to providing important SIDS context and specific calls to action to drive the realization of the Declaration. SIDS Member States including Barbados, Belize, Montserrat and St. Vincent and the Grenadines, have already begun to commit to actions on NCDs and Mental Health. All Commitments can be found here. The Declaration will also feed into the upcoming 2nd UN High Level Meeting on Universal Health Coverage, the SIDS 2024 Meeting in Antigua and Barbuda, and the 2025 4th UN High Level Meeting on NCDs – amongst others.
Another perspective on the conference including Q&A’s with some of the delegates and the extensive media coverage can be found on this page SIDS Ministerial Conference on NCDs and Mental Health.
In this video, Ambassadors Luke Daunivalu (Fiji) and Ambassador Matthew Wilson (Barbados) present the 2023 Bridgetown Declaration to WHO Director-General.
Additional resources
SIDS commitments for NCDs and mental health
Small Island Developing States Data Portal
Noncommunicable diseases and mental health in small island developing states report
Here are some photos from the event
The post Launch of the 2023 Bridgetown Declaration on NCDs and Mental Health appeared first on Healthy Caribbean Coalition.
2 years 1 month ago
Mental Health, News, SIDS, Slider
Familias huyen de los estados que niegan atención de salud a las personas trans
Hal Dempsey quería “escaparse de Missouri”. Arlo Dennis está “huyendo de Florida”. La familia Tillison “no puede quedarse en Texas”.
Son parte de una nueva migración de estadounidenses que se están desarraigando debido a una oleada de leyes que restringen la prestación de servicios de salud para personas transgénero.
Missouri, Florida y Texas se encuentran entre al menos 20 estados que han limitado la atención de afirmación de género para jóvenes trans. Los tres estados también están entre aquellos que impiden que Medicaid, el seguro de salud público para personas de bajos ingresos, cubra aspectos clave de estos servicios para pacientes de todas las edades.
Más de una cuarta parte de los adultos trans encuestados por KFF y The Washington Post a fines del año pasado dijeron que se mudaron a otro vecindario, ciudad o estado en busca de un ambiente más tolerante. Ahora se sienten impulsados por las nuevas restricciones en la atención de la salud y la posibilidad de que estas se sigan multiplicando.
Muchos de ellos optan por estados que están aprobando leyes para proteger y apoyar estos servicios, lugares que se han convertido en santuarios. En California, por ejemplo, se aprobó una ley el otoño pasado que protege de demandas a las personas que reciben o brindan servicios de afirmación de género. Y ahora, los proveedores en California están recibiendo cada vez más llamadas de personas que quieren mudarse al estado para evitar interrupciones en sus servicios, dijo Scott Nass, médico local de familia y experto en atención de personas transgénero.
Pero esta afluencia de pacientes presenta un desafío, dijo Nass, “ya que el sistema actual no puede recibir a todos los refugiados que pudiera haber”.
En Florida, la persecución legislativa de las personas trans y su atención médica convenció a Arlo Dennis, de 35 años, de que es hora de irse. Hace más de una década que vive con los cinco miembros de su familia en Orlando. Ahora, tienen planes de mudarse a Maryland.
Dennis ya no tiene acceso a su terapia de reemplazo hormonal. Esto se debe a que desde fines de agosto, el seguro de Medicaid de Florida ya no cubre la atención médica relacionada con la transición. El estado considera que estos tratamientos son experimentales y que su eficacia no está suficientemente probada. Dennis dijo que su medicación se acabó en enero.
“Sin duda esto me ha causado problemas de salud mental y física”, explicó Dennis.
Agregó que mudarse a Maryland requiere recursos que su familia no tiene. Lanzaron una campaña de GoFundMe en abril y ya recaudaron más de $5,600, la mayoría donada por desconocidos, contó Dennis. Ahora la familia de tres adultos y dos niños piensa irse de Florida en julio. La decisión no fue fácil, pero sintieron que no había otra opción.
“No me importa si a mi vecino no le gusta mi forma de vivir”, dijo Dennis. “Pero esto era una prohibición literal de mi ser y me impedía el acceso a la atención médica”.
Mitch y Tiffany Tillison decidieron irse de Texas después de que los republicanos del estado enfocaron su agenda legislativa en las políticas anti-trans para los jóvenes. Su hija de 12 años se declaró trans hace unos dos años. Los padres pidieron que se publicara solo su segundo nombre, Rebecca: temen por su seguridad debido a las amenazas de violencia contra las personas trans.
Este año, la Legislatura de Texas aprobó una ley que limita la atención médica de afirmación de género para jóvenes menores de 18 años. La ley prohíbe específicamento aquellos servicios de salud física. Sin embargo, defensores de los derechos LGBTQ+ en el estado dicen que las medidas recientes también han tenido un escalofriante efecto sobre la prestación de servicios de salud mental para personas trans.
Los Tillison se negaron a precisar si su hija está recibiendo tratamiento y cuál. Pero afirmaron que reservan el derecho, como padres, de poder brindarle a su hija la atención que necesita, y que el estado de Texas les ha quitado ese derecho.
A esto se suman las amenazas cada vez más serias de violencia en su comunidad, sobre todo después del tiroteo masivo del 6 de mayo por parte de un supuesto neonazi. La masacre, que ocurrió en el centro comercial Allen Premium Outlets, en los suburbios de Dallas, a 20 millas de su casa, hizo que la familia decidiera mudarse al estado de Washington.
“La he mantenido a salvo”, dijo Tiffany Tillison, agregando que suele recordar el momento en que su hija le dijo que era trans durante un largo viaje a casa después de un torneo de fútbol. “Es mi responsabilidad seguir protegiéndola. Mi amor es interminable, incondicional”.
Por su parte, Rebecca tiene una actitud pragmática sobre la mudanza, que está planeada para julio. “Es triste pero tenemos que hacerlo”, dijo.
En Missouri, donde casi se aprueba una medida que limitaba la atención de la salud trans, algunas personas empezaron a repensar si deberían vivir ahí.
En abril, el fiscal general de Missouri, Andrew Bailey, presentó una norma de emergencia para limitar el acceso a la cirugía relacionada con la transición y el tratamiento hormonal cruzado para personas de todas las edades, además de restringir los bloqueadores de la pubertad, medicamentos que detienen la pubertad pero no alteran las características de género.
Al día siguiente, Dempsey, de 24 años, lanzó una campaña de GoFundMe para recaudar fondos para irse con sus parejas de Springfield, Missouri.
“Somos tres personas trans que dependen de la terapia de reemplazo hormonal y de la atención de afirmación de género que pronto será casi prohibida”, escribió Dempsey en su campaña de GoFundMe, agregando que querían “escapar de Missouri cuando se termine nuestro contrato de alquiler a fines de mayo.”
Dempsey dijo que su médico en Springfield les recetó un suministro de tres meses de terapia hormonal para cubrirlos hasta la mudanza.
Bailey retiró la norma en mayo, cuando la legislatura estatal restringió el acceso a estos tratamientos para menores pero no para adultos como Dempsey y sus parejas. Aún así, Dempsey dijo que no tenía muchas esperanzas para su futuro en Missouri.
El estado vecino de Illinois era una opción obvia para mudarse; la legislatura allí aprobó una ley en enero que exige que los seguros médicos regulados por el estado cubran la atención médica de afirmación de género sin ningún costo adicional. Dónde en Illinois exactamente era una pregunta más importante. Chicago y sus suburbios parecían demasiado caros. Sus parejas querían una comunidad progresista similar en tamaño y costo de vida a la ciudad que estaban dejando. Buscaban “un Springfield”, en Illinois.
“Pero no Springfield, Illinois”, bromeó Dempsey.
Gwendolyn Schwarz, de 23 años, también esperaba quedarse en Springfield, Missouri, su ciudad natal, donde recientemente se graduó de Missouri State University con un título en estudios de cine y medios de comunicación. Pensaba seguir su carrera académica en un programa de posgrado de la universidad y, en el siguiente año, someterse a una cirugía de transición, que puede requerir varios meses de recuperación.Pero sus planes cambiaron cuando la norma propuesta por Bailey generó miedo y confusión.“No quiero quedarme atrapada y temporalmente discapacitada en un estado que no reconoce mi humanidad”, dijo Schwarz.
Ella y un grupo de amigos tienen planeado mudarse al oeste, al estado de Nevada, cuyos legisladores aprobaron una medida que requiere que Medicaid cubra el tratamiento de afirmación de género para pacientes trans.
Schwarz espera que mudarse de Missouri a Carson City, la capital de Nevada, le permita seguir viviendo su vida sin miedo y eventualmente someterse a la cirugía que desea.
Dempsey y sus parejas finalmente decidieron mudarse a Moline, Illinois. Los tres tuvieron que renunciar a sus trabajos, pero han recaudado $3,000 en GoFundMe, más que suficiente para cubrir el depósito de un nuevo departamento.
El 31 de mayo, empacaron las pertenencias que no habían vendido e hicieron el viaje de 400 millas hasta su nuevo hogar.
Dempsey ya tuvo una cita con un proveedor médico en una clínica en Moline que atiende a la comunidad LGBTQ+, y consiguió que le recetaran los medicamentos que necesita para su terapia hormonal.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
2 years 1 month ago
Health Industry, Mental Health, Noticias En Español, Rural Health, States, california, Florida, Illinois, Legislation, LGBTQ+ Health, Maryland, Missouri, Nevada, texas, Transgender Health
Medical Exiles: Families Flee States Amid Crackdown on Transgender Care
Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”
They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.
Hal Dempsey wanted to “escape Missouri.” Arlo Dennis is “fleeing Florida.” The Tillison family “can’t stay in Texas.”
They are part of a new migration of Americans who are uprooting their lives in response to a raft of legislation across the country restricting health care for transgender people.
Missouri, Florida, and Texas are among at least 20 states that have limited components of gender-affirming health care for trans youth. Those three states are also among the states that prevent Medicaid — the public health insurance for people with low incomes — from paying for key aspects of such care for patients of all ages.
More than a quarter of trans adults surveyed by KFF and The Washington Post late last year said they had moved to a different neighborhood, city, or state to find more acceptance. Now, new restrictions on health care and the possibility of more in the future provide additional motivation.
Many are heading to places that are passing laws to support care for trans people, making those states appealing sanctuaries. California, for example, passed a law last fall to protect those receiving or providing gender-affirming care from prosecution. And now, California providers are getting more calls from people seeking to relocate there to prevent disruptions to their care, said Scott Nass, a family physician and expert on transgender care based in the state.
But the influx of patients presents a challenge, Nass said, “because the system that exists, it can’t handle all the refugees that potentially are out there.”
In Florida, the legislative targeting of trans people and their health care has persuaded Arlo Dennis, 35, that it is time to uproot their family of five from the Orlando area, where they’ve lived for more than a decade. They plan to move to Maryland.
Dennis, who uses they/them pronouns, no longer has access to hormone replacement therapy after Florida’s Medicaid program stopped covering transition-related care in late August under the claim that the treatments are experimental and lack evidence of being effective. Dennis said they ran out of their medication in January.
“It’s definitely led to my mental health having struggles and my physical health having struggles,” Dennis said.
Moving to Maryland will take resources Dennis said their family does not have. They launched a GoFundMe campaign in April and have raised more than $5,600, most of it from strangers, Dennis said. Now the family, which includes three adults and two children, plans to leave Florida in July. The decision wasn’t easy, Dennis said, but they felt like they had no choice.
“I’m OK if my neighbor doesn’t agree with how I’m living my life,” Dennis said. “But this was literally outlawing my existence and making my access to health care impossible.”
Mitch and Tiffany Tillison decided they needed to leave Texas after the state’s Republicans made anti-trans policies for youth central to their legislative agenda. Their 12-year-old came out as trans about two years ago. They asked for only her middle name, Rebecca, to be published because they fear for her safety due to threats of violence against trans people.
This year, the Texas Legislature passed a law limiting gender-affirming health care for youth under 18. It specifically bans physical care, but local LGBTQ+ advocates say recent crackdowns also have had a chilling effect on the availability of mental health therapy for trans people.
While the Tillisons declined to specify what treatment, if any, their daughter is getting, they said they reserve the right, as her parents, to provide the care their daughter needs — and that Texas has taken away that right. That, plus increasing threats of violence in their community, particularly in the wake of the May 6 mass shooting by a professed neo-Nazi at Allen Premium Outlets, about 20 miles from their home in the Dallas suburbs, caused the family to decide to move to Washington state.
“I’ve kept her safe,” said Tiffany Tillison, adding that she often thinks back to the moment her daughter came out to her during a long, late drive home from a daylong soccer tournament. “It’s my job to continue to keep her safe. My love is unending, unconditional.”
For her part, Rebecca is pragmatic about the move planned for July: “It’s sad, but it is what we have to do,” she said.
A close call on losing key medical care in Missouri also pushed some trans people to rethink living there. In April, Missouri Attorney General Andrew Bailey issued an emergency rule seeking to limit access to transition-related surgery and cross-sex hormones for all ages, and restrict puberty-blocking drugs, which pause puberty but don’t alter gender characteristics. The next day, Dempsey, 24, who uses they/them pronouns, launched a GoFundMe fundraiser for themself and their two partners to leave Springfield, Missouri.
“We are three trans individuals who all depend on the Hormone Replacement Therapy and gender affirming care that is soon to be prohibitively limited,” Dempsey wrote in the fundraising appeal, adding they wanted to “escape Missouri when our lease is up at the end of May.”
Dempsey said they also got a prescription for a three-month supply of hormone therapy from their doctor in Springfield to tide them over until the move.
Bailey withdrew his rule after the state legislature in May restricted new access to such treatments for minors, but not adults like Dempsey and their partners. Still, Dempsey said their futures in Missouri didn’t look promising.
Neighboring Illinois was an obvious place to move; the legislature there passed a law in January that requires state-regulated insurance plans to cover gender-affirming health care at no extra cost. Where exactly was a bigger question. Chicago and its suburbs seemed too expensive. The partners wanted a progressive community similar in size and cost of living to the city they were leaving. They were looking for a Springfield in Illinois.
“But not Springfield, Illinois,” Dempsey quipped.
Gwendolyn Schwarz, 23, had also hoped to stay in Springfield, Missouri, her hometown, where she had recently graduated from Missouri State University with a degree in film and media studies. She had planned to continue her education in a graduate program at the university and, within the next year, get transition-related surgery, which can take a few months of recovery.
But her plans changed as Bailey’s rule stirred fear and confusion.
“I don’t want to be stuck and temporarily disabled in a state that doesn’t see my humanity,” Schwarz said.
She and a group of friends are planning to move west to Nevada, where state lawmakers have approved a measure that requires Medicaid to cover gender-affirming treatment for trans patients.
Schwarz said she hopes moving from Missouri to Nevada’s capital, Carson City, will allow her to continue living her life without fear and eventually get the surgery she wants.
Dempsey and their partners settled on Moline, Illinois, as the place to move. All three had to quit their jobs to relocate, but they have raised $3,000 on GoFundMe, more than enough to put a deposit down on an apartment.
On May 31, the partners packed the belongings they hadn’t sold and made the 400-mile drive to their new home.
Since then, Dempsey has already been able to see a medical provider at a clinic in Moline that caters to the LGBTQ+ community — and has gotten a new prescription for hormone therapy.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
USE OUR CONTENT
This story can be republished for free (details).
2 years 1 month ago
Health Industry, Mental Health, Rural Health, States, california, Florida, Illinois, Legislation, LGBTQ+ Health, Maryland, Missouri, Nevada, texas, Transgender Health
News Archives - Healthy Caribbean Coalition
An NCD Civil Society Response in Support of the 2023 Bridgetown Declaration
This NCD Civil Society Response in Support of the 2023 Bridgetown Declaration to be adopted this week, provides key messages and follow-up recommendations by the Healthy Caribbean Coalition and the NCD Alliance.
This NCD Civil Society Response in Support of the 2023 Bridgetown Declaration to be adopted this week, provides key messages and follow-up recommendations by the Healthy Caribbean Coalition and the NCD Alliance.
It represents civil society’s ongoing contribution to the development of the 2023 Bridgetown Declaration and accompanying Annexes for adoption at the Small Island Developing States (SIDS) Ministerial Conference on Noncommunicable Diseases (NCDs) and Mental Health (14-16 June 2023). The recommendations are the result of NCDA’s and HCC’s involvement in the process so far.
It is hoped that this Conference will be a turning point for SIDS, supported by the global community, to accelerate action on the largely preventable burden of NCDs, including mental, neurological and substance use disorders (MNSDs), that disproportionally impacts SIDS. People living in SIDS are at higher risk of dying prematurely from a major NCD, and SIDS show the highest rates of childhood and adult obesity worldwide.
The post An NCD Civil Society Response in Support of the 2023 Bridgetown Declaration appeared first on Healthy Caribbean Coalition.
2 years 1 month ago
Mental Health, NCDs and Climate Change, News, SIDS, Slider