The Kids Are Not OK
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Julie Rovner
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Julie Rovner is chief Washington correspondent and host of KHN’s 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.
Teen girls “are experiencing record high levels of violence, sadness, and suicide risk,” according to a new survey from the Centers for Disease Control and Prevention. In 2021, according to the survey, nearly 3 in 5 U.S. teen girls reported feeling “persistently sad or hopeless.”
Meanwhile, a conservative judge in Texas has delayed his ruling in a case that could ban a key drug used in medication abortion. A group of anti-abortion doctors is suing to challenge the FDA’s approval decades ago of the abortion pill mifepristone.
This week’s panelists are Julie Rovner of KHN, Alice Miranda Ollstein of Politico, Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico, and Sandhya Raman of CQ Roll Call.
Panelists
Alice Miranda Ollstein
Politico
Joanne Kenen
Johns Hopkins Bloomberg School of Public Health and Politico
Sandhya Raman
CQ Roll Call
Among the takeaways from this week’s episode:
- American teenagers reported record rates of sadness in 2021, with especially high levels of depression in girls and teens identifying as LGBTQ+, according to a startling CDC report. Sexual violence, mass shootings, cyberbullying, and climate change are among the intensifying problems plaguing young people.
- New polling shows more Americans are dissatisfied with abortion policy than ever before, as a U.S. district court judge in Texas makes a last call for arguments on the fate of mifepristone. The case is undermining confidence in continued access to the drug, and many providers are discussing using only misoprostol for medication abortions. Misoprostol is used with mifepristone in the current two-drug regimen but is safe and effective, though slightly less so, when used on its own.
- There are big holes in federal health privacy protections, and some companies that provide health care, like mental health services, exploit those loopholes to sell personal, identifying information about their customers. And this week, Republican Gov. Glenn Youngkin of Virginia blocked a state law that would have banned search warrants for data collected by menstrual tracking apps.
- California plans to manufacture insulin, directly taking on high prices for the diabetes drug. While other states have expressed interest in following suit, it will likely be up to wealthy, populous California to prove the concept.
Plus, for “extra credit” the panelists suggest health policy stories they read this week that they think you should read, too:
Julie Rovner: NPR’s “Is the Deadly Fungi Pandemic in ‘The Last of Us’ Actually Possible?” by Michaeleen Doucleff
Alice Ollstein: The New York Times’ “Childbirth Is Deadlier for Black Families Even When They’re Rich, Expansive Study Finds,” by Claire Cain Miller, Sarah Kliff, and Larry Buchanan; interactive produced by Larry Buchanan and Shannon Lin
Joanne Kenen: NPR’s “In Tennessee, a Medicaid Mix-Up Could Land You on a ‘Most Wanted’ List,” by Blake Farmer
Sandhya Raman: Bloomberg Businessweek’s “Zantac’s Maker Kept Quiet About Cancer Risks for 40 Years,” by Anna Edney, Susan Berfield, and Jef Feeley
Also mentioned in this week’s podcast:
Click to open the transcript
Transcript: The Kids Are Not OK
KHN’s ‘What the Health?’Episode Title: The Kids Are Not OKEpisode Number: 285Published: Feb. 16, 2023
Julie Rovner: Hello and welcome back to KHN’s “What the Health?” I’m Julie Rovner, chief Washington correspondent at Kaiser Health News. And I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Thursday, Feb. 16, at 10 a.m. As always, news happens fast, and things might have changed by the time you hear this. So here we go. Today we are joined via video conference by Alice Miranda Ollstein of Politico.
Alice Miranda Ollstein: Good morning.
Rovner: Sandhya Raman of CQ Roll Call.
Sandhya Raman: Good morning.
Rovner: And Joanne Kenen of the Johns Hopkins Bloomberg School of Public Health and Politico.
Joanne Kenen: Hi, everybody.
Rovner: Later in this episode we’ll have the winner of KHN’s health policy valentines contest. I hope everyone had a pleasant Valentine’s Day with someone that you love. But first, this week’s health news. I’m calling our lede segment this week “The Kids Are Not OK,” and we’ll get to the gun violence stuff in a minute. First is news from the Centers for Disease Control and Prevention’s Youth Risk Behavior Survey. And let me just read from the press release, quote, “Nearly 3 in 5 — 57{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} — of U.S. teen girls felt persistently sad or hopeless in 2021, double that of boys representing a nearly 60{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} increase, and the highest level reported over the past decade.” According to the survey, teens who identify as LGBTQ+ have, quote, “ongoing and extreme distress. More than 1 in 5 of that group said they had attempted suicide in the year before the survey.” Now, clearly, 2021 was a bad year for most of us. The pandemic was still raging, but the political fights over things like vaccines and masking were raging, too. But these rates of mental health problems found by the biannual survey of high school students has gone up in every report since 2001. Why is this happening? What is wrong with our young people and what can we do to help?
Kenen: Well, whatever’s wrong with our young people is going to also be wrong with our old people. I mean, we create the world in which … I mean, I’m a mother and I’m an aunt and I’m an extended-family motherly person. There’s something about the world that we have created for our young people. Julie, we grew up in the Cold War. We grew up … we don’t remember the missile crisis and things like that. But we did grow up in an era of anxiety, existential threats. And yet, for our generation, it wasn’t as bad as it is for this generation. And in this generation, you look at kids who seem to be on top of the world, and they feel like the world is on top of them.
Rovner: Well, at least in my case, you couldn’t be bullied unless you were in person … which is not true anymore.
Kenen: But even 2000, 2001, it wasn’t. That’s not the only thing going on here. And it’s not only the pandemic. I mean, it’s lots of things.
Ollstein: What really jumped out to me in this data was the really high rates of rape and sexual violence. You know, the CDC has said that 1 in 5 teen girls have experienced sexual violence just in the past year, and more than 1 in 10 say they’ve been forced to have sex. This was grouped together with the mental health, depression, suicidal ideation data, indicating that these things are related. And so I think in order to pinpoint some factors, it really seems like … people don’t know how to relate to each other in a sexual way that’s healthy. I think a lot about the efforts to restrict education about sex and sexuality in schools and how that could potentially make this even worse.
Rovner: And remember, this is a survey of high school students. So these are younger young people, or at least early in their, you know, sexual awareness.
Kenen: Yeah, but there was assault and unwanted … there was ugly stuff in prior generations, tons of it. And it wasn’t … and in some ways it was more secretive and more shameful. I mean, I’m not saying it’s not a problem. It’s obviously a huge problem. Alice is right. But it’s not unique to this generation. It’s hard to measure because we weren’t looking for it. But it certainly wasn’t something that didn’t happen. But I think it was even more secretive in the past. So I agree with Alice, but I don’t think that’s all of it.
Rovner: Sandhya.
Ollstein: And you’re right that it’s hard to know for past generations.
Kenen: But they didn’t ask that question.
Ollstein: Since they’ve been asking, it’s gotten worse. They say it’s … sexual violence is up 20{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} since 2017. Rape is up 27{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} since 2019. So since they’ve been investigating this, it’s getting worse.
Raman: I would also add the cyberbullying element is a huge piece. You know, if we were looking at this maybe 20 years ago, that was not the same case. The amount of time that teens and young people spend online is much greater now, even within the data they looked at it — that cyberbullying was a lot higher for teens, for LGBTQ youth. And that has been a broad issue that, even this week in Congress, the Senate Judiciary Committee was looking at protecting kids online. And a huge element of that was cyberbullying. You heard from different parents who had lost a child due to excessive cyberbullying on a lot of these social media apps and due to suicide or other mental health issues. And I think that’s a huge piece of now versus, you know, several years ago.
Rovner: Yeah, I agree. Well, clearly, one factor in the declining mental well-being of high school students is the threat of being swept up in a mass shooting event. As if this week’s shooting at Michigan State University wasn’t awful enough, some of the students who had to shelter in place for hours in East Lansing were also survivors of the Oxford, Michigan, high school shooting in 2021. And there was even one student that we know of who was at Sandy Hook Elementary in 2012. Now, in college, there have been 71 mass shootings, defined as an incident in which four or more people are shot or killed, so far in 2023, according to the Gun Violence Archive, and it’s only the middle of February. And just in time, Gallup reports that 63{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} of Americans are dissatisfied with the nation’s gun laws. Up 7 percentage points from last year and the highest level in 23 years. Is there any way to get this any closer to the top of the issues for lawmakers to address? I mean, they got something tiny done last year, but it feels like the problem is just exploding.
Raman: No, I was going to say, even last year with the incremental stuff was really difficult to get across the board. And, even going back to the CDC data, there were survey results about how many kids are afraid to go to school right now. And that was one of the factors that was rising. And gun violence is obviously a factor in safety, especially for kids now. But I think on a federal level, getting something additional across the line, especially with this split Congress, is going to be really difficult. It might be more of a state-level thing. I think Michigan is already talking about doing something, but it might have to be more on that end than federal.
Ollstein: Yeah, absolutely. And not only with the divided Congress, but I think a lot of the champions of gun reform on the Republican side have since retired. I’m thinking of Sen. [Pat] Toomey, in particular. And so not only do you have a House-Senate divide, but you don’t have some of the voices on the right calling for this that you’re used to.
Rovner: Yeah, the sides seem to be retreating to the poles, as usual, and the public is not happy about it.
Kenen: Well, one last thing, Julie, really quickly. I mean, I think young people today are very aware of climate as an existential threat, which was not true of prior generations.
Rovner: Yes.
Kenen: And I think kids have this real profound fear. And I think that feeds into the anxiety part of it. At least, you know, they just …
Rovner: Yeah, I think that’s absolutely true. And that’s something that’s been ratcheting up over the past several years as we’ve seen this mental well-being …
Kenen: The pace of damage to the Earth is faster than the scientists had projected.
Rovner: All right. Well, now we’re going to turn to abortion, which is another place where the public is not happy with how it’s being regulated. Yet a different Gallup poll finds Americans more dissatisfied with U.S. abortion policy than any time in 23 years, with a record 69{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} of adults reporting dissatisfaction. That includes 46{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} who want less strict laws and only 14{b574a629d83ad7698d9c0ca2d3a10ad895e8e51aa97c347fc42e9508f0e4325d} who say they want more restrictions. Yet the political energy seems like it’s with the anti-abortion side, or am I misreading that?
Ollstein: I think there’s a lot of activity on both sides. I mean, Sandhya mentioned Michigan, and I think that’s a spot — along with Minnesota, where Democrats really won big in this past election and want to use their new state-level power to advance some abortion rights measures. But I think you’re seeing a lot more on the “anti-” side, and you’re seeing a lot more splits within the anti-abortion side over how to restrict abortion, how far to go, what kind of exemptions to include, if any. And so you’re seeing a lot more debate, whereas the left, who wants to protect abortion rights, seems a little bit more unified on what they want to do right now. And then, like guns, the federal level is pretty stalemate, roadblock. Nothing much is going to happen there.
Rovner: But also, I think it’s that, you know — and I’m as guilty of this as anybody — that the journalists would rather cover squabbles than people who are actually together. So maybe it’s getting a little more ink. Well, it continues to look like a single federal judge in Texas might well try to ban the abortion pill. mifepristone nationwide. Trump appointee Matthew Kaczmarek did not rule as expected last week in a case charging FDA with wrongly approving the drug 22 years ago. Rather, the judge gave the parties two more weeks to submit briefs, which seems to have prompted every party with the least bit of interest in this case to file amicus briefs. I have never seen anything like this at the federal district court level. It looks like a major Supreme Court case, but it’s not. Has anybody else seen anything like this? I mean, this case seems to be taking on as much importance as your average big Supreme Court case.
Ollstein: It very well could be a Supreme Court case in the future. And I think that’s reflected there, too. And I also want to note that part of the reason for the couple of weeks of delay the judge ordered was to allow the drugmaker to have time to submit arguments because the drugmaker, Danco [Laboratories], says that the different parties in the suit, even the FDA, aren’t really representing their interests and they want to argue for the right to market their product. So that’s pretty interesting. But then, yeah, you have the attorneys general, Democrats, and Republicans lining up on either side of the case. The Republican attorneys general saying, “We support banning this medication nationwide” and the Democratic attorneys general saying, “No, let’s trust the FDA and their scientific process to approve this drug.”
Kenen: I mean, I think there’s sort of a significance in how it’s described because you can say, well, Congress gave the FDA the power to approve drugs. But the anti-abortion movement does not call this a medication abortion. They call it chemical abortion. And therefore, they’re treating this not as a drug but as a lethal chemical. You know, whether the judge goes along with that thinking … we know he’s a strongly anti-abortion judge. There’s no question. And there’s a widespread anticipation that he is going to rule with the anti-abortion side. But we never know what a judge is going to do until a judge does it. And Alice has covered this much more closely than I have, so she’ll probably want to weigh in more. But the issue is, is he going to think that the court should overrule the FDA or is he going to think this is a, quote, “chemical,” not a, quote “medication,” and therefore that the FDA is irrelevant? And I mean, Alice, you can give a better restatement of what I just said since you’ve written about it.
Rovner: I want to respond to Alice’s earlier point about the drug company wanting to get involved, because the big question here, not to get into too much legal minutiae, is why did the people who are suing have standing to sue? They have not been injured by the ability to sell this drug for 22 years. No one’s making them buy it. Arguably, the only party that has standing is the drug company, because if it was cut off, they would lose money. They have an obvious injury here. So the legal niceties of this may not go together either. Alice, do you want to do a follow-up?
Ollstein: Yeah, I mean, to go to the standing issue, the people challenging the FDA approval here are conservative doctors who say that they’ve had to do follow-up treatment for patients who’ve taken the abortion pill and then need follow-up treatment, and that takes their time and attention away from treating other patients. I mean, doctors treating a patient, that’s kind of their job. So I think there’s definitely a question on harm and standing there. Just a couple of thoughts on the case. Abortion rights groups both say that this could be an absolute crisis, disaster across the country. But then they also point out that people will still be able to have medication abortions because the two-pill regimen that’s been used for 20 years, it can still work with just the second pill. So this case is about banning the first pill. The different providers who have spoken out say we’re preparing to just provide abortions via the second pill, if needed.
Rovner: And that second pill, misoprostol, is not going to be pulled off the market. It’s used for many, many things. It just happens it also can end a pregnancy.
Ollstein: Exactly. Way harder to ban. And that’s one thing. Medication abortions will still continue if the judge rules how people expect him to. You know, another thing with all the amicus briefs and the drug company intervening as people are bringing up, if we allow someone to come in 20 years after the fact and challenge FDA approval of something, doesn’t that open Pandora’s box to people challenging all kinds of things, I mean, vaccines and whatnot? And won’t that cause chaos and not make drug companies feel like they can trust the process and have confidence in bringing drugs to market in the U.S.? So that’s another piece of the puzzle as well.
Raman: I would add that there’s already a little bit of chaos because, you know, whatever ruling we have, likely later this month, is almost definitely going to be appealed and then probably appeals again. So it’s going … we could have a back-and-forth process where providers might go one way and then the other. And then, in the contingency stuff they’ve been doing, piggybacking on what Alice was saying, is that if they do this misoprostol regimen, it’s not as straightforward as the two-dose that you’re used to in that there are different amounts of dosage, you might have to do repeated dosages. It’s not as simple, even if that’s done in a lot of other parts of the world. And then some providers have said that they would also just switch to doing all surgical abortions. But that also is more timely. You’d have to do the whole thing in clinic rather than send someone home with the pill. And then that is going to take longer. You’re going to schedule fewer patients. There’s already that many different contingency plans that these clinics are going to have to do regardless of what we hear down the line and through the appeals process.
Rovner: We already know that clinics are backed up from women coming from other states. So patients are having to wait longer to get abortions. And, you know, as … it gets further along, you have to do different procedures that are more expensive. It’s already piling up in different places. Well, speaking of some other different places, we’re seeing a lot of national pro- and anti-abortion groups getting involved in a Wisconsin Supreme Court election, of all things. What is up with that?
Ollstein: Well, that could decide the fate of abortion access in that state. You know, you have the split of a Democratic governor and a Republican legislature. So things really could come down. You know, the state had a pre-Roe ban that went into effect. So things are expected to come down to the makeup of the Supreme Court. And so you’re having just tons of outside money being poured into this race for that reason and really putting a spotlight on how much power are these state supreme courts have. And it’s true in other states as well. And there are many cases pending in different states. You know, I’ve been following the Kentucky one, in particular, but there are a bunch of different cases pending before a state supreme court that could really re-legalize or maintain the ban on abortion.
Kenen: There are also election issues and, on abortion, in the state of Wisconsin, election rules, election certification issues that it’s one of the three or four states where that’s really a hot potato. And that’s another reason this race is getting so much attention. I mean, it’s the state Supreme Court race that’s getting a huge amount of national attention and national money. So there are several issues I would agree with Alice on. The No. 1 is probably abortion. But it’s not only abortion.
Raman: And it’s interesting because this is the first time that EMILY’s List has endorsed ever a state Supreme Court race. And I think another thing to consider is that, you know, this is still considered a nonpartisan race since it’s a court seat. I mean …
Rovner: In theory.
Raman: In theory, yes. Even though all of these groups are looking at the histories of how people have ruled in the past. But I think that’s another thing that makes it a little bit more interesting given it’s not strictly a Democrat or Republican endorsement, like a lot of the other things that we’ve been following.
Rovner: Yes. And I saw on the other side the Susan B Anthony List, the anti-abortion group, said … put out a press release this week saying they’re going to have six-figure spending in Wisconsin on this race. So …
Kenen: It’ll be very good for the Wisconsin economy.
Rovner: It will be very good for the Wisconsin economy. Well, anti-abortion lawmakers are busy in a bunch of states pursuing another new trend, giving tax breaks to so-called crisis pregnancy centers that, at least when abortion was legal, lured pregnant women in by pretending to be an abortion clinic and then trying to convince them not to terminate their pregnancies. Missouri has already allowed donors to these crisis pregnancy centers to write off contributions on their state taxes. Now, Kansas, Arkansas, and Oklahoma are considering similar programs, but Kansas is the only one of those states where abortion is still legal. What are CPCs going to do now that they can’t pose as abortion facilities?
Raman: I think there’s still a lot of confusion for folks. I mean, given how a lot of these laws have been changing back and forth. I mean, even as folks that follow this very closely, there’s so many different things where someone … I think we’ve looked at polling before where people don’t always know: Is abortion illegal or not legal in our state? Or at what point? It’s difficult to keep track of, with so many changes going back and forth. So I think that there could feasibly still be people who might be looking for an abortion that don’t understand or — we’ve seen that a lot of these clinics have also bought a lot of ads so that you might be searching for an abortion and you get redirected to one of these clinics. So I think there’s still overlap in folks that might be searching for one and end up at another.
Kenen: I don’t know how much online presence they have, because that could be across state lines. You know, if someone’s on or near a border, there’s all sorts of … people might think that surgical abortions are legal, but medication is not, or that they can or someone could help them order pills. You can never underestimate how confused Americans are about any number of things. So … but they also might …
Rovner: This is confusing, to be fair.
Kenen: Yes. But they also might concentrate their efforts less on the no-abortion states and move more to the abortion states. Or they may advertise in ways that captures or attempts to capture people who are looking to go out of state or to get a cross-state-line prescription, whatever. They can promote themselves in different ways. Or they may also just decide to not do as much in Texas and do a lot more in upstate New York. I mean, I don’t know how they’re going to totally respond to the legal landscape either.
Ollstein: Yeah. And they’ve also become sort of a legal force of their own. I know they’re involved in challenging some of California’s pro-abortion rights policies. The CDC is specifically. So they also have … are trying to play a role on that front, in addition to direct patients’ interface or however we want to phrase it.
Rovner: All right. Well, while we’re talking about patients’ privacy, I want to talk about data. First, a kind of terrifying story from The Washington Post this week details how data brokers have been selling the names and addresses of people with depression, anxiety, and other mental health disorders so they can be advertised to. A lot of this has come from people using mental health apps or websites that are not covered by the HIPAA privacy rules because they are not technically covered health entities. A separate story this week notes how Virginia Gov. Glenn Youngkin helped defeat a bill in the Virginia legislature to provide legal protections to women’s menstrual data contained in period tracking apps. A Virginia official who was opposing the bill said it would put limits on search warrants, which could lead to other problems down the road. One researcher described the privacy practices of the vast majority of mental health apps as, quote, “exceptionally creepy.” How concerned should we be about all of this?
Kenen: I found that really horrifying. And a family friend who had been looking for a therapist and I said, well, maybe — and they were having trouble finding somebody in network and it’s very expensive — and I said, “Well, maybe you should look into some of the online ones that do take insurance.” And after reading that, I told that person, “I’m not so sure that it’s a good idea.” And we do have a shortage of mental health providers in this country. We have an even greater shortage of mental health providers that take insurance. There’s been a lot of talk about how telemedicine for mental health is at least part of the answer. But this should really raise … because they’re not just selling de-identified data. Some of them in that article were selling people’s names, address, diagnosis, and medical history. If it was truly, truly, truly de-identified, it’s different then. And that can be used for research. But a lot of what’s so-called de-identified isn’t de-identified. And this doesn’t even pretend to be. This is, like, search, and you can find out who the person is, an awful lot of intimate detail about their lives. So unless there’s some real safeguards, would you want any of your medical data with your name on it being sold? No. It is. It is being. But …
Rovner: When the HIPAA rules first went into effect, which was around the year 2000, actually it took a few years — researchers came to Capitol Hill screaming because they were afraid they weren’t going to be able to get any of this de-identified data and they weren’t going to be able to continue to do research. Now, we seem to have gone far in the other direction. And I know that there are efforts on Capitol Hill to do things to update the women’s reproductive information, keeping that private. Anybody think that they might get into an expansion of HIPAA? I mean, that’s really all it would take would be to create more covered entities.
Raman: Yeah, it isn’t as much about the expansion of HIPAA, but there have definitely been pretty concerted efforts to get … the U.S. doesn’t have a comprehensive data privacy law. You know, in contrast to, like, the EU or something. And that has been a big effort for the lawmakers that are focused on tech policy for a while. Even the hearing earlier this week with Senate Judiciary, they brought up several bills. And the issue has been that all of these issues are bipartisan, folks are on board. It’s just not enough people are on board, and little things that have been getting in the way there. And so that has been an issue. And I think even during that hearing, we had one researcher bring up different sites — like NEDA, which is mentioned in some of these lawsuits by some of the hospitals — have been collecting all of this data. But then they, as researchers, are not able to get access to that data, and that would be extremely beneficial for them to be able to say this is what the impact of some of these things are on kids. So it’s a Catch-22 where it’s, like, OK a) we’re not having the research be able to get the data, b) we’re having it sold in a malicious way and c) we haven’t been able to find a solution to mitigate all of this.
Kenen: Yeah, I don’t know about the prospects for a gigantic tech bill because it has many components and they’re controversial and hard to get 60 votes for. But I think there’s a difference between selling stuff about who bought shoes versus someone who is on an anti-psychotic or an antidepressant or whatever, or getting marital counseling, whatever. I mean, these are not the same issue as the whole constellation of tech issues. I can see this being something bipartisan. HIPAA has been updated a little bit, but the fundamental HIPAA law dates back to what, ’96, Julie? … I think that’s when it was.
Rovner: Yeah, although …
Kenen: It has been updated, but it hasn’t been overhauled to really fit the cyber universe we live in.
Rovner: But also Congress never really did HIPAA. People don’t remember this: The 1996 law basically had a provision that said Congress needs to fundamentally address privacy if we’re going to move more towards digital health records, which at the time was starting to happen. And if they don’t, then the secretary of Health and Human Services is authorized to put out regs. And guess what? Congress didn’t do it. So the HIPAA regs that we have now were put out at the end of the Clinton administration. Congress was never able to come together on this. So now things have obviously gotten worse.
Kenen: Yes. And since the Supreme Court now doesn’t like agencies regulating that, that seems to create an entire new existential question. But do I think that medical privacy is something that you could find some kind of bipartisan lanes on? I don’t think a lot of bipartisan things are going to happen in the next two years. This does seem to be one of the few areas that is not a red-blue ideological issue. And I can see Republicans and Democrats being horrified by some of this and maybe not totally sealing it up, but putting … better guardrails on what can be brokered.
Raman: One of the issues has been, I think even in the past, was that California is the one state that has implemented a few layers of very intense data privacy laws. And so, you know, when you have people in leadership that are in from California and it’s hard to get some of those compromises across when it might be more watered down than something California has and take precedent being federal. So it’s one of the many layers of why it’s been difficult over the past year to get any of this stuff done.
Rovner: Well, we should note that the Biden administration is actually working on some enforcement. Earlier this month, the Federal Trade Commission fined the prescription drug discounter GoodRx $1.5 million for illegally sharing customer’s personal health information. It was the very first enforcement action under a 2009 law that applies to health record vendors and others not covered by HIPAA. So at least there’s one avenue where this could be pursued. I imagine we’ll be seeing more of that if not, you know, whether or not they can reach all of these things seems unlikely.
Kenen: Yeah, doing it piecemeal does not seem to be the approach, and I’m not even sure how much $1.5 million is for GoodRx. I don’t think that’s a lot of money for any major pharmaceutical entity.
Rovner: No. And there are a lot of people who use it. All right. Well, finally this week, while we’re talking about drugs, I’ve been trying to get to this for a while. California has — speaking of California, things that other states haven’t done — California has decided to try to limit the cost of insulin for people with diabetes by manufacturing it itself. Could this set a precedent to really disrupt the insulin market, or is California just so big and wealthy that it’s basically the only state that could do something like this — or only state they would do something like this?
Ollstein: So I will note that Gov. [Gretchen] Whitmer in Michigan has also proposed state manufacturing of insulin. So California might not be the only one. I think the idea is that insulin is pretty cheap to manufacture. It’s become the poster child for out-of-control drug prices for that reason — the disparity between what it costs for patients and what it costs to make is so vast. And so I think you are likely to have a few states. But I think it will take a state doing it successfully to get a significant number of others to follow.
Rovner: I think there might be a thought that because California is so big, it could disrupt the market elsewhere — I mean, in the country. That strikes me as a reach. But it’s, you know, Congress, again — talking about things that Congress can’t do — they managed to limit insulin prices for people on Medicare, but not even for everybody else.
Kenen: There was also a good piece in The Atlantic, maybe two or three months ago, that some of these new diabetic drugs, which are injectables and very expensive, mean you don’t need insulin. So … but by addressing making insulin really cheap, which is a good … I mean so people who are on insulin and need insulin … but there are some people who actually could take one of these other drugs and then they wouldn’t be able to afford these other drugs, which might be better for them. And then they’ll end up on cheap insulin. So it’s always more complicated than it sounds. And I also think there’s different kinds of insulin. Someone else on the panel might, you know, that I’m not sure that …
Rovner: There are lots of different formulations.
Kenen: There are two major kinds of diabetes, obviously, Type 1 and Type 2. And then there’s different patients with different degrees of … you know, how far their other health conditions is advanced, etc., etc. So cheap insulin is not even a solution for diabetes. It’s one part of a solution for one of many chronic diseases in America.
Rovner: Well, we will never not have enough things to talk about. That is the news for this week. Now it is 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 khn.org and in our show notes on your phone or other mobile device. Joanne, why don’t you kick us off this week?
Kenen: Yes. This was a collaboration between NPR, Nashville Public Radio, and Kaiser Health News, aired on NPR by Blake Farmer. “In Tennessee, a Medicaid Mix-Up Could Land You on a ‘Most Wanted’ List.” And basically, Tennessee is cracking down on Medicaid fraud. Most Medicaid fraud is actually from doctors and other health care providers — there have been a bunch of home health scandals and so forth. The amount of fraud and the amount of money involved in patient fraud is small, and yet they’re spending a huge amount of money to try to capture a small amount of fraud. And there are huge mistakes. Like the person in this article was just … she was entitled to Medicaid. She did nothing wrong. But they publicly … like, they don’t even wait for you to be convicted. They’re publishing … they’re making public the charge. This woman turned out to be … it had to do with an old address on … an expired driver’s license that got the system confused. She was doing nothing wrong, and yet she was completely blacklisted, employment and everything else because she was accused of being a felon in publicly available databases. So, a) are they looking in the right place for fraud? And b) are they protecting people’s rights? Clearly the latter they are not because they were publishing … people were accused but not convicted, and then they weren’t removing it in a timely, effective way. So this woman is, like, unemployable. She can’t rent an apartment, and she did nothing wrong. So there’s a whole series of abuses in this story. Not that Medicaid fraud is a good thing. Medicaid fraud is a bad thing, but this is not the way to go after it.
Rovner: This was one in a series of horrifying stories this week. Alice, you have another horrifying story.
Ollstein: Yes. Although this is under the banner of more evidence to bolster the upsetting things that we sort of already knew. This is a really good piece from The New York Times, laying out a lot of data to show that there is these differences in maternal mortality between Black and white women that can’t be attributed to income, showing that even wealthier Black women still face much worse outcomes. And so they say, you know, even when you account for income, even when you account for education and a lot of other factors, there are still these impacts of structural racism in the health system that continue to put Black mothers more in danger. And so this is coming at a time when there’s a lot of focus on this. But there has been sort of a lot of focus on the income, socioeconomic side and people recommending that states expand postpartum coverage of Medicaid. And that certainly is recommended, and experts think that would help. But this shows that it won’t completely solve the problem and there are other factors to address.
Kenen: And it’s not just in maternal mortality. I mean, the racial disparities in health care are not just income-related.
Rovner: And finally, Sandhya, you have a story from one of our fellow podcast panelists.
Raman: Yeah, the story I picked is “Zantac’s Maker Kept Quiet About Cancer Risks for 40 Years,” and that’s at Bloomberg News from Anna Edney, Susan Berfield, and Jef Feeley. And this was a really great story about Zantac, the heartburn and reflux drug that was once one of the world’s best-selling prescription medications. And then in 2020, it was pulled off the U.S. market over cancer risks. And the article goes through how since its beginnings, Glaxo’s own scientists, the drugmaker, had warned that it could be dangerous, but proving some of this has been a little difficult. … But the story goes through some of the documents that show that Glaxo chose not to look into this, even though the leading health agencies — EPA, FDA, WHO — all say NDMA is a carcinogen.
Rovner: Yeah, it’s quite the investigation. Well worth reading. Well, my story is a little less horrifying than everybody else’s. It’s from my former NPR Science Desk colleague Michaeleen Doucleff and it’s called “Is the Deadly Fungi Pandemic in ‘The Last of Us’ Actually Possible?” And I will cut to the chase. The answer is most almost certainly no. But that’s not to say we shouldn’t be worried about fungi and fungal diseases, particularly as the Earth continues to warm, which is what touches off the pandemic in the video game/HBO miniseries that’s airing now. There are new fungal diseases that can be pretty nasty, too, but zombies, almost certainly not. Well, maybe, certainly not. Anyway, listen to or read Michaeleen’s story. Before we go, this week was Valentine’s Day and, as promised, we have the winner of KHN’s best health policy valentine, as chosen by our editors and social media staff. This year’s winner is Jennifer Goldberg, and it goes as follows: “Roses are red, candy is sweet. Adding #Dental to #Medicare makes it more complete!” Congrats to Jennifer and thanks everyone for your creative health policy valentines.
OK, that’s our show for this week. 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 ever-patient producer, Francis Ying. As always, you can email us your comments or questions. We’re at whatthehealth — all one word — @kff.org. Or you can tweet me. I’m @jrovner. Joanne?
Kenen: @JoanneKenen
Rovner: Sandhya?
Raman: @SandhyaWrites
Rovner: Alice.
Ollstein: @AliceOllstein
Rovner: We will be back in your feed next week. Until then, be healthy.
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