News

May 26, 2023

Congress Is Out. The Presidential Campaign Is In.

Congress has left for its annual August recess, but lawmakers have a long to-do list waiting when they return — and only a handful of legislative days to fund the government before the Oct. 1 start of

Congress has left for its annual August recess, but lawmakers have a long to-do list waiting when they return — and only a handful of legislative days to fund the government before the Oct. 1 start of the new fiscal year.

Meanwhile, Republican presidential candidates who are not named Donald J. Trump are preparing for their first televised debate and making interesting promises about health care.

This week’s panelists are Julie Rovner of KFF Health News, Alice Miranda Ollstein of Politico, Sandhya Raman of CQ Roll Call, and Lauren Weber of The Washington Post.

Among the takeaways from this week’s episode:

Also this week, Rovner interviews KFF Health News senior correspondent Phil Galewitz, who reported the latest KFF Health News-NPR “Bill of the Month” installment, about how a bill that should never have been sent created headaches for one patient. If you have an outrageous medical bill you’d like to share with us, you can do that here.

Subscribe to KFF Health News' free Morning Briefing.

Plus, for “extra credit,” the panelists suggest health policy stories they read this week that they think you should read, too:

Julie Rovner: Stat’s “Henrietta Lacks Settlement Hailed by Experts as Step Toward Correcting Medicine’s Racist History,” by Annalisa Merelli.

Alice Miranda Ollstein: The Tampa Bay Times’ “Florida Veered From Norms to Strip Transgender Care From Medicaid, Records Show,” by Emily L. Mahoney and Romy Ellenbogen.

Sandhya Raman: KFF Health News’ “Black Women Weigh Emerging Risks of ‘Creamy Crack’ Hair Straighteners,” by Ronnie Cohen.

Lauren Weber: Politico’s “CDC Investigators Find More TB Infections Linked to Bone Graft Materials,” by Alice Miranda Ollstein and Lauren Gardner.

Also mentioned in this week’s episode:

KFF Health News’ ‘What the Health?’Episode Title: Congress Is Out. The Presidential Campaign Is In.Episode Number: 308Published: Aug. 3, 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, Aug. 3, 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 Ollstein, of Politico.

Ollstein: Good morning.

Rovner: Lauren Weber, The Washington Post.

Lauren Weber: Hello, hello.

Rovner: And Sandhya Raman, of CQ Roll Call.

Sandhya Raman: Good morning.

Rovner: Later in this episode we’ll have my interview with my KFF Health News colleague Phil Galewitz, who wrote the latest “Bill of the Month” for KFF Health News and NPR. This month’s patient never should have gotten a bill for his care, but he and his family ended up with a giant mess nonetheless. But first, this week’s news. It is officially August. Congress is gone until September, which makes it a good time to take stock of what has and hasn’t been accomplished on the health agenda and what might feasibly get done this fall, which is always shorter than you think. The biggest outstanding issue, literally and figuratively, is the spending bill for the Department of Health and Human Services. When Congress comes back, members theoretically only have 11 legislative days before Oct. 1, when the new fiscal year begins. And if Congress doesn’t complete work on the spending bill, which has yet to come to the House or Senate floor or even get out of the House Appropriations Committee, a lot of Health and Human Services programs could shut down unless Congress passes a temporary bill to keep them open. Sandhya, right now everything kind of points to an Oct. 1 shutdown, or am I missing something?

Raman: Yeah, I think at this point we’re looking at either a shutdown or just, like, a continuing resolution, just kicking the can a little bit down the road and giving them some more time. So right before Congress left, the Senate did advance, in the Appropriations Committee, their spending bill for [the departments of] Labor, HHS, and Education. And that means that all 12 of theirs have gotten at least that far, through the Senate Appropriations Committee, but they would still need to come to the floor, and it doesn’t mean that the House is going to agree to any of that. And the House is a lot further behind in that the only markup they’ve had on the HHS bill is on the subcommittee level. It’s not even at the House Appropriations level. And you can kind of see the tea leaves in that they were trying to get the agriculture bill done before they left, which has all the FDA money in it, and they didn’t end up bringing it to the floor because they didn’t think they would have the votes to pass it. So I think that we’re going to need some time, given that I don’t think that, even though the Senate bills have been bipartisan so far, that they’re going to be eager to jump on those.

Rovner: Every year when there’s a change in leadership in either the House or the Senate, they vow, “This is the year we’re not going to do a big omnibus spending bill. We’re going to do all 12 appropriations separately, and we’re going to run them through the House and the Senate floors, and we’re going to have a conference.” And it hasn’t happened in more than 20 years now. And there’s clearly no reason to think it’s going to happen this year, right?

Ollstein: And one of the biggest sticking points: There are the fights that happen every single year over things like the Hyde Amendment, which prevents federal spending on abortion, but that has spread to almost every single appropriations bill. There are anti-abortion budget riders. There are anti-trans health care budget riders. There are all kinds of things tucked in there that Democrats say they will oppose and that the Senate bills don’t have. But, you know, you have this disconnect where there are plenty of House members who would be completely fine with a shutdown; they’ve said publicly that they think that would not be so bad.

Rovner: You have to say it wouldn’t be as bad as letting the debt ceiling get breached.

Ollstein: Right, right, right, right. Whereas Democrats are very much saying it would be horrible to have a shutdown. And so I was talking to some Democratic House members who say that people are really torn between the pressure to make a deal to keep the government open and the pressure to oppose all of these conservative budget riders. And that tension is going to really come into play in the fall.

Rovner: Yeah. Alice, you wrote a wonderful story on all the abortion fights in all these different bills, and I just had sort of deja vu to the ’90s. If you were following abortion, you had to keep track of obviously the ag bill with FDA in it, HHS bill, and the Department of Justice bill because of abortion in prisons, and the defense bill because of, you know, abortions for servicewomen. I mean, we basically had some kind of abortion fight in more than half of the appropriations bills. So we’re coming back to that right now. Well, there are also lots of programs whose authorizations expire Oct. 1. That’s not the same as the appropriations bills that we’ve just been talking about. Without appropriations, programs have to shut down, at least temporarily. Authorizations, though, can lapse as long as the programs are funded through the appropriations. But it’s still nice to, you know, get your work done on time. Some of the big programs Congress is working on include renewing authority for community health centers, for pandemic preparedness programs, for a big group of graduate medical education programs. What’s the fall outlook for those authorizations?

Raman: So I think part of it is tied into what we see with appropriations, because a lot of these programs — even if they come to an agreement, it’s likely to ride on whatever big spending bill we have next, whether that’s a continuing resolution, whether that’s an omnibus or anything like that. So if we end up seeing some sort of continuing resolution, which is looking likely, a lot of these are going to be short-term, maybe extended if they have an agreement there, which is what they traditionally do, and then something longer — the next vehicle that pops up, the next one, or sometimes they even get a one-year, even if there is agreement, just because this is what Congress does. So some of them, I think, are looking more promising than others. We’ve seen things kind of happen with some of the graduate medical education, the [National] Health Service Corps, like those have kind of come to some sort of agreement, but —

Rovner: And those are typically bipartisan programs.

Raman: Yeah, but then others are not as far along and will take time. I mean, the process to even do like the SUPPORT [for Patients and Communities] Act, which was a 2018 law that had a bunch of different opioid provisions in it, that was bipartisan, got through: I mean, we’ve been marked up in [the] Energy and Commerce [Committee] in the House, and the Senate has not done a markup; they just have a bill that has come out so far. And so getting that done before the Sept. 30 deadline is tricky. There are some that are a little bit more partisan that I think would be more difficult to get done. I mean, the Children’s Hospitals Graduate Medical Education has been a little bit derailed over, like, political back-and-forth over policies for transgender children. And so I think even some things that have been more easy to get across the finish line in the past are having factors that are weighing them down. So a lot of these are a question mark. Yeah.

Rovner: So that was originally a Republican program. I remember when it was created because Medicare funds most of the graduate medical education, but obviously there’s not a lot of Medicare beneficiaries who are children, so they had been left out and this is their own program. But I always get at this point to share my favorite piece of trivia about authorizations versus appropriations, which is that the federal family planning program, Title X [“ten”], has not been reauthorized since 1984. Congress has tried any number of times and has failed. It continues to get funded, but it has literally been operating without authorization for all of those years. Well, one more important authorization that’s not part of the Department of Health and Human Services but is part of health care is PEPFAR [the United States President’s Emergency Plan for AIDS Relief], the very successful international AIDS and HIV program begun under President George W. Bush 20 years ago this year. But this time around, the bipartisanly popular program is hung up over — what else? — abortion. Alice, you wrote about this. I mean, PEPFAR, this is really a Republican-backed program.

Ollstein: Yes. It was created by George W. Bush and has had bipartisan support for most of its life. It’s credited with saving the lives of tens of millions of people. Few programs can say that, of any kind. And millions of people are depending on it right now for access to medications around the world. So Republicans are saying that they won’t support reauthorizing it but they will keep it funded through appropriations, just like you were talking about, keep it sort of limping along on a one-year budget, with language restoring the Trump-era restrictions on the program. So, of course, for the entirety of the program, money has not gone to providing abortions, but this expands that and says money can’t go to any organization that, you know, uses other money to provide abortions or even an organization that gives money to another organization and that subsequent organization does abortions. And so this really has been tough for the program in the last few years. And independent experts are telling me that not reauthorizing it, yes, it wouldn’t shut down the program, but they worry it would send a signal to other countries that this is not something the U.S. is really invested in going forward and it would lead other people to cutting their contributions.

Rovner: Yeah, I mean, in addition to saving millions of lives or tens of millions of lives, this has been an important piece of international diplomacy, particularly in Africa, right?

Ollstein: Right. And that was the point Sen. [Bob] Menendez [(D-N.J.)], who had wanted a full five-year reauthorization attached to the NDAA [National Defense Authorization Act], which he said his Republican colleagues killed — he made that exact point.

Rovner: The defense authorization bill.

Ollstein: Exactly, yes. They were trying that as a workaround to get it reauthorized. And it didn’t work because of GOP opposition. But Menendez was saying, you know, this will only empower countries like China that have been trying to make inroads in Africa with philanthropic work and reduce the influence of the U.S. The geopolitics are definitely on people’s mind as well as the basic humanitarian value.

Rovner: So it’s going to be a busy fall. Well, while we are on the subject of reproductive health, the problem of getting maternal health care here in the U.S. is growing, according to a new study from the March of Dimes. We are the country that already has the worst record for maternal mortality in the developed world. Yay, us. How much worse has it gotten?

Ollstein: It’s gotten a lot worse. So in just one year, between 2019 and 2020, there was a 4% decline in the number of hospitals that have birthing services, OB [obstetrics] wards. And 4% may not sound like a lot, but it’s not evenly distributed; that’s just the national average. Some states had a nearly 25% decline. And like you said, you know, we’re already doing so much worse than other countries with maternal mortality. And this just means millions of more people than before are living in a county that has zero hospitals, zero OB-GYNs, zero maternal health care providers — and then a lot of those same places, these same states and counties, also have really high rates of chronic health conditions that are contributors to maternal mortality. And so all of this is coming as births are expected to go up because of abortion bans. This data was from before Dobbs [v. Jackson Women’s Health Organization, the 2022 Supreme Court ruling overturning the nationwide right to abortion], so we don’t know yet what’s going to happen, but the expectation is that births will go up. And at the same time, there’s just fewer care providers to meet that need.

Rovner: And we also know that in the states with bans, we’re starting to see providers either leave or not go there to train in the first place, which is just going to make the whole thing worse. This week the action is going on in a couple of Midwestern states, Indiana and Ohio, I guess both of which have bans, and one of which is in force and one of which isn’t. Where are we with Indiana and Ohio? I know it changes from hour to hour.

Ollstein: So Ohio’s ban is still enjoined, so that means abortion is still legal in Ohio. The development was about this upcoming vote, and there are two upcoming votes. This is kind of wonky, but the upcoming vote that’s happening in less than a week is whether to make ballot initiatives in general harder to pass, to raise the threshold from 50 to 60%. And that’s explicitly intended to thwart the fall vote on legalizing abortion in the state and putting something in the state constitution that supports it.

Rovner: Which, coincidentally, polls show has about like 56, 57% support, right? So 60% would make it more likely to fail.

Ollstein: Right. Right. That’s coming up. But for now, because of a court injunction, abortion remains legal and the ban is not enforced.

Rovner: And Indiana, which had a very stringent ban that was about to go into effect?

Ollstein: Sandhya, do you want to?

Raman: Oh, yeah. I was just going to add to Ohio first that, as of this morning, the voter turnout for the Ohio election next week is super high. It was, like, over 380,000 people have already cast their ballot, and that was higher than, I guess, you know, when they had, like, [a] competitive Senate primary before. And so it will definitely be something to watch. I mean, we don’t know if the voter turnout is high one way or the other, but I just thought that was really interesting. But with Indiana, their abortion ban was supposed to take effect on Tuesday and then it was halted by another lawsuit, and they were the state that was the first one to pass a post-Dobbs, new abortion ban last year. So it’s, like, another sticking point in that a lot of the bans that have gone into effect are older laws or things that have been unblocked in court.

Rovner: So, yes, it really does depend on the day. I guess I read that a bunch of clinics that had been providing abortion have stopped, even though the ban is, at least for the moment, on hold. So rather typically around the country, you literally have to go day by day to figure out what is allowed and what is not. All right. Well, let us turn now to a segment I’m calling “Myths and Disinformation” this week. Lauren, I was so glad you could join us this week because you and a couple of your colleagues at the Post have a new investigation into how doctors who were peddling bad and often dangerous information during the pandemic were called to account. Spoiler: Not a lot of them were, right?

Weber: Yeah, I was going to say spoiler alert that not a lot of them were called to account. So essentially my colleagues Lena Sun, Hayden Godfrey, and I reviewed the records from all 50 states’ various medical boards, both MD boards and osteopathic boards, to see who actually had been punished for spreading covid misinformation or for practicing in a way that is misinformation-related. And despite discovering from our various records requests over hundreds of complaints for doctors that asked patients to remove masks or told them the vaccines were full of metal or told them not to get a vaccine or a various number of the —or prescribed ivermectin or hydroxychloroquine — only 20 doctors have been disciplined, and we are three and a half years into covid. And you know, what our investigation found is something that everyone on this panel has known for quite some time. But state medical boards are historically weak, underfunded, and are very ill-equipped in the social media age, where misinformation is a deluge, to really step into that breach. And what our investigation essentially found is that they’ve really failed to stop doctors that are spreading misinformation or, you know, prescribing drugs that are not deemed the consensus around the standard of care.

Rovner: So everybody says, oh, well, this is up to medical boards in every state, and they keep doctors honest and keep them on the straight and narrow and sanction them when they do wrong things. That’s not been true for a long time. And I guess now it’s still not true, right?

Weber: Yeah, exactly. And it’s really interesting. And this came up, too, in the case in Idaho for abortion, you see a lot of misinformation folks cite free speech in their ability to practice medicine. It’s actually — you know, it makes it difficult to discipline people because it is being able to prescribe things off-label, or your medical judgment is not something people — medical boards are loath to discipline over, and for good reason. You understand why that may be, but in the case of covid, where this has continued and, you know, treatments like hydroxychloroquine or ivermectin have been deemed outside of the standard of care, it is very surprising that we’ve seen such a low number of disciplinary actions taken. It really goes to show that the boards are not equipped to kind of step into this breach as misinformation has flooded the zone.

Rovner: Well, meanwhile, abortion rights groups are getting frustrated with Meta, Facebook’s parent company, over its inconsistent moderation of information about abortion and reproductive health. It reminds me of some years ago when public libraries would try to limit internet search terms to keep people away from online porn but ended up barring people from searching about breast cancer because it had the word “breast” in it. So this isn’t something that’s new. In fact, going back decades, anti-abortion groups used to advertise their crisis pregnancy centers, which don’t offer abortion but sound like they do, in the yellow pages of the phone book. And kids, ask your parents what a Yellow Pages was. But social media algorithms have the ability to determine what information a lot more people see or don’t see. This one looks pretty hard to resolve. I know that, unlike Twitter, Facebook is trying here, but this is going to be difficult, yes?

Weber: Yeah, I would say it’s a really hard — you know, it’s interesting that the article in particular that you’re talking about, there were two different camps opposed that were saying abortion is killing the unborn child versus you’re killing people if they have an abortion. And both of those got sanctioned by Facebook because it had the word kill in it. And so what we’re going to see is how they come down on this information. But in a world where you see misinformation — in [Judge Matthew] Kacsmaryk’s circuit [district] court ruling, you know, it’s kind of hard to see how this is going to be resolved by Facebook. I do not envy them in this task. I don’t really know how you would come down on this and how you would comprehensively evaluate all of these posts in a fair manner that is respective of free speech. And like you said, Julie, you know, a lot of times it leads to unintended consequences when you try and restrict posts like this on all sides. And there are some smart people that are trying to advise in the correct way, but we’ll see what happens.

Rovner: Yeah, it is not easy. Speaking of mis- and disinformation and real information, we’re going to move to the campaign trail, because it’s only August of an odd-numbered year but the 2024 presidential campaign is in full swing, with the first Republican candidate debate later this month. And while health care, specifically the desire to repeal the Affordable Care Act, is far from the rallying cry for Republicans that it has been in the last couple of presidential campaigns, we are seeing some interesting stances and comments from candidates who are not named Donald Trump. We will start with the candidate who’s running second in the Republican primary polls. That would be Florida Gov. Ron DeSantis, whose campaign launch has been anything but smooth. DeSantis, perhaps looking for some publicity, raised some eyebrows last week when he suggested on a conservative podcast that, if elected, he might install Democratic presidential candidate and known anti-vaxxer Robert F. Kennedy Jr. at the CDC [Centers for Disease Control and Prevention] or the FDA. DeSantis has been trying to stake out kind of a middle ground on his vaccine position. He’s not outright anti-vax, but he doesn’t support mandates and he’s kind of hot and cold on supporting vaccines in general. I don’t see how this would actually win him love on either side. I mean, he actually said that they would sic RFK Jr. on the CDC or the FDA.

Weber: I got to say, I find it fascinating. I mean, look, RFK Jr. has a cult following. And I think if anything, it speaks to the fact that Republicans are very much anti-vaccine mandate, anti-government shutdown, all things that RFK says all the time. And DeSantis did walk it back and said he would put him on a committee because, you know, we wouldn’t want a Democrat actually running these things. But I think really what this episode shows is the salience that words like the CDC, and we’ll talk later about the FDA — you know, the American voting public cares about these things now. They know what these agencies are, and they have strong feelings. They blame them for pandemic policies. And I think it just goes to show that relitigating the pandemic and different people’s versions of how they believe the pandemic went is really going to be a constant in this political run-up to 2024.

Ollstein: While I agree with that, I also think it is maybe not as salient as DeSantis was hoping it would be. I mean, he really has formed his candidacy on his governorship during the pandemic, and it doesn’t seem to be breaking through. He’s still just miles and miles and miles behind Trump. And depending on the polls, some of these people with way less of a platform than the governor of Florida are doing quite well. And so I think that people do have strong feelings about vaccine mandates and mask mandates and school closures and all of that, but not nearly as strong as a year ago. So I think that he maybe isn’t getting the juice from saying a lot of these things that he was hoping he would.

Rovner: Well, speaking of candidates who have less of a platform and yet seem to be making inroads — long shot but picking-up-momentum candidate Vivek Ramaswamy, who actually does know something about health policy, as the founder of a biotech firm, has vowed to, quote, “expose and [to] ultimately gut” the FDA. Now, he is a former libertarian rapper, so it is not a shock that he opposes most federal regulatory entities. But I wonder how even Republican voters would feel about actually gutting the FDA. It’s one thing — Alice, you were talking about feelings about the pandemic, but the FDA obviously does a lot more things than just deal with masks and covid vaccines. I mean, is there really a Republican constituency for wiping out the federal regulatory mechanism?

Ollstein: I mean, there at least seems to be at the state level in some states. We’ve talked so much about how GOP lawmakers have voted to roll back public health powers in a bunch of states because of covid. But it’s set to have implications way beyond covid and limit public health workers’ ability to respond to foodborne outbreaks and other things — things in the water, things in the air. So you could see that skepticism and desire to strip the government of its public health powers at the federal level as well.

Rovner: And, Lauren, you’ve been looking at this at the state level, too, right, sort of the slow decline of trust in public health, or maybe not-so-slow decline of trust in public health.

Weber: Yeah. I mean, you know, I found this February, 30 states have passed laws that have rolled back public health powers. There’s litigation at the federal level that has really stripped a lot of executive power for the public health system. As we know, public health leaders on the ground have resigned, quit, or been fired in droves due to political pushback. There’s a lot of concern among the public health community and the folks that I talk to constantly that we have seen just a massive hollowing-out of the workforce that will be impossible to replace. And so I think you’re seeing, you know, kind of as we’ve talked about, how I think this is a talking point among Republican candidates, to kind of bash these government agencies because it’s something that is appealing to people that are irritated over these deals.

Raman: Like, if you look at his comments about this, does this really hold up to the scrutiny? I mean, FDA is not the one that would mandate vaccines, mandate mask-wearing. They don’t set prices. None of that is under their jurisdiction. And, you know, you can assume that he knows this given his background, but I think it just kind of goes with some of his other comments about, you know, defunding a lot of the other agencies that he’s made. So I think some of this also just banks on people maybe not knowing, you know, what falls under what bucket. And it just might be an easy punching bag to lump it in together if the people aren’t aware of what falls under CDC versus FDA or any other agency or state-level.

Rovner: And he’s one of those people that just seems very sure of himself, even when what he’s saying isn’t necessarily true. And the very-sure-of-himself part seems to appeal to voters. But I want to go back to DeSantis just one more time. But before we’re done, speaking of trying to have it both ways, DeSantis stepped into a bees’ nest on abortion, of all things. This is the governor who signed a six-week abortion ban bill in Florida, but he kind of hemmed and hawed about saying whether he would support a national abortion ban. So that won him a firm rebuke from the Susan B Anthony List, which is a pretty powerful political arm of conservative Republicans. Does DeSantis really think he can sustain a position like this, where you can really say, “We only want states to deal with this and we don’t really want it to be at the federal government”? I mean, that was sort of the Supreme Court’s argument. But I think that there’s a lot of grassroots Republicans who would like to not have to fight this state by state and would like to see a national ban.

Ollstein: Yes, the major anti-abortion groups have said that that, you know, “leave it to the states” is not an answer they will accept and they will continue to put the pressure on candidates. Their argument is that, you know, because of things like the appropriations process and because of things like access via Medicaid — [that] is a fight and access in prisons is a fight and access for — you know, their argument is the federal government is already involved in abortion, so you should support the federal government getting involved in banning abortion.

Rovner: Which is kind of true. I mean, the part about the federal government already being heavily involved in abortion.

Ollstein: Sure. Do with that what you will. But candidates keep falling into this same trap. I mean, you had Nikki Haley, who is not polling very well at the moment — she held a whole event with Susan B. Anthony List that they hyped, and she said she would lay out her plan for abortion and there were, like, no specifics whatsoever. And then the group said, “Oh, she assured us she supports a national ban,” but then she said she didn’t. And this is going to continue to be a fight. I think really Mike Pence is the one who is most firm in saying, “Yeah, I support a national ban.”

Rovner: Yeah, and he’s been consistent his entire career, when he was in the House and when he was governor.

Ollstein: He is also not polling very well, I will note.

Rovner: Yes, that’s true. Fair point. We will obviously continue to talk about things on the campaign trail as we move along the campaign trail. Well, finally this week, I want to talk about covid, which we haven’t done for a while. It is still around, and cases, while still low, are on the upswing at the moment. But the news this week is that after almost three years, the National Institutes of Health is finally acting on directions from Congress to get moving on efforts to study and treat so-called long covid, which as many as 10% of patients end up with after having the virus. The long covid community, which could be several million people, have been agitating for scientists to take their symptoms more seriously and do more work in the research realm. Now, NIH has finally created an Office of Long COVID [Research and Practice], albeit with only two full-time staffers to start with. It’s also started enrolling an estimated 24,000 people in several clinical trials to test things like a longer course of the drug Paxlovid. But patient groups say it’s still way too little for what’s a serious and growing more widespread ailment. Why is this all taking so long? I mean, we have a Democratic administration. One would think that they would be anxious to do this.

Weber: I mean, I think if you look at it, there was over a billion dollars allocated to this. I mean, I don’t know why it’s taking so long, Julie. I think a lot of advocates are asking the same question and really beating the drum around that — and especially if you look at things that are named Operation Warp Speed or, you know, other covid treatments, vaccine, other things that were able to move at a much quicker pace and get done in a much quicker time frame — I think there’s a lot of agitation among what could be a very large group of people that their concerns and quality of life and some of these horrible symptoms are not being addressed. And as you noted, I think it’s very fascinating there are only two full-time staffers. I’ll be curious to see if this continues to change, but historically, it hasn’t been very promising.

Rovner: This is not new that Congress will direct, particularly the NIH, to study something that NIH just doesn’t seem prepared to study. Of course, as we know, there’s no NIH director at the moment. We’ve talked about the fact that nominee is being blocked by Democrat Bernie Sanders. But still, I mean, this is something — and I think Congress wants NIH to do because so many of their constituents are coming to them and saying, “We have this problem; please go out and study it.” And yet the federal scientists don’t seem to know really what to do.

Weber: Well, and there was a congressman, I don’t remember his name, but someone on this panel probably does, who said he was retiring because he has long covid, and I think he has colleagues that also have long covid. So, I mean, I think that probably helped get them a fair amount of cash. But as you said, the delivery mechanism on getting clinical trials rolling has really not been there.

Rovner: Well, we will keep an eye on this, too. That is this week’s news. Now we will play my interview with KFF Health News’ Phil Galewitz, and then we will come back with our extra credits. We are pleased to welcome back to the podcast my colleague Phil Galewitz, who reported and wrote the latest KFF Health News-NPR “Bill of the Month” story. Phil, thanks for being here.

Phil Galewitz: Nice to be back.

Rovner: So, this month’s patient was well covered by insurance and, to cut to the chase, shouldn’t have paid anything for a surgery he had in 2021. Tell us who he is and what kind of care he got.

Galewitz: Thomas Greene had complications from diabetes, and he had to get some clogged arteries cleared out in his leg to treat something called peripheral artery disease. So he went to the hospital in 2021 for the procedure. He recovered pretty well. He had some other health issues, but he recovered fine from the procedure. The issue then came when the bills started coming in.

Rovner: And Mr. Greene has both Medicare and a supplemental Medigap policy, which should have brought his out-of-pocket cost to zero. But that’s not what happened. What did happen?

Galewitz: Yes, the Greenes, because of their good insurance, were used to whenever they got health care, that they did not have any out-of-pocket expenses. But this time, about a year later, or over a year, after the procedure, they suddenly started getting some letters from collection agencies who were looking to collect bills for about $3,000 for anesthesia.

Rovner: So, just the anesthesia part.

Galewitz: It was just the anesthesia. The hospital was fine. The surgeon who did the procedure was fine, but the anesthesiologist, who they were not even familiar with, started sending them bills through a collection agency, and they were perplexed about what was going on. And they tried to reach out and call and find out what was happening, why they were getting bills. And they said they were getting a runaround and couldn’t really get a clear answer.

Rovner: They went for help, too, and the people who were helping them had trouble getting answers.

Galewitz: Yes. They went to some organizations within Pennsylvania that specialize in helping seniors with their medical bills, and even them couldn’t get any clear answers. And then thankfully, they kept pushing and kept pushing, and they were able to get another advocacy group to work on their behalf, who talked to this organization called the North American Partners in Anesthesia, which is a large anesthesia group, to stop sending them bills, and thankfully, the bills have stopped coming. They did not pay anything, but they were worried about that this was going to affect your credit.

Rovner: So what did happen? How did they end up with these bills that they shouldn’t have had?

Galewitz: It’s still a mystery. North American would not talk to us, KFF Health News, to give us answers, and they don’t really have a clear answer. By law, providers are supposed to bill Medicare within one year to have their claims paid. In this case, the records that the Greenes have show that the bills to the claims to Medicare were sent in after a year, and that because of that, Medicare clearly marked down and said these bills are after a year, we’re not paying anything, and the patient owes zero. And when a patient gets a notice from Medicare saying, “You owe zero,” that’s supposed to be it. You don’t owe anything. No matter what letters you get from the provider, you’re not supposed to pay anything. But in this case the provider continued to bill and continued to send collection agencies after the patient. And they were perplexed.

Rovner: And just to be clear, when they billed this supplemental policy, the supplemental policy has to deny it if Medicare denied it, right?

Galewitz: Right. Humana was their supplemental provider, and that was actually the answer from Humana. If Medicare is not covering it, then we’re not going to cover it.

Rovner: So, in the meantime, even if you get one of these bills and you know that you don’t owe anything but there are collection letters coming, you do need to do something, right?

Galewitz: Yes. You should open your mail. The Greenes did say at one point they think they may have gotten some letters earlier from the anesthesia group and they may not have opened them. Because they didn’t expect any bills, they didn’t open them. The lesson is open your mail. Even if you think you shouldn’t get any bill, you should at least know ahead of time that you may be able to stave off problems down the road. So always open your mail, and then you may be able to handle the problem earlier on. So they may have stopped some of the collections. But again, they were covered. They reached out. They tried to do everything that they can within their realm, and they struggled. They’re feeling OK now. They never got a letter from North American saying, “Hey, we apologize,” or, “You’re in the clear.” They’ve just stopped getting bills. And it’s been since last year that they’ve gotten a bill, so they feel like they should be OK.

Rovner: And just the one little quirk also of this story is that it looked like the anesthesia group overbilled, right?

Galewitz: There was a question on the bills, on the claims, that it appeared that an anesthesiologist and a nurse anesthetist both billed Medicare for the exact same time, though it could be that maybe there was both, that one assisted the other. This was not a complex procedure. So there were questions about that. But it would be unusual that they would both bill for the exact same time period. And so there’s a question if they were double billing; it could not have been. North American would not answer our question.

Rovner: Well, so we have discovered another thing that, even if you don’t necessarily get answers, it appears that they got their problem solved, right?

Galewitz: Yes.

Rovner: OK. Phil, Galewitz, thank you very much.

Galewitz: Thank you.

Rovner: OK. We are back and 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’ll post the links on the podcast page at kffhealthnews.org and in our show notes on your phone or other mobile device. Alice, why don’t you go first this week?

Ollstein: Sure. Staying on the DeSantis train, I have a piece from the Tampa Bay Times called “Florida Veered From Norms to Strip Transgender Care From Medicaid, Records Show.” And this came out of a lawsuit that was challenging the state’s decision to strip Medicaid coverage of gender-affirming care, not just for children, but for adults as well. So what came out in discovery in the lawsuit was that the state did just all of these really unusual things. And the judge thought it showed a political motivation rather than, you know, a serious health care motivation for doing this. They paid all of these outside contractors with dubious backgrounds to be part of this effort. They came up with a slogan for the report, which is completely unusual. And the reporters found that staffers who supported defunding gender-affirming care got huge raises, and people who were not supportive of it did not. So, really good accountability reporting, and it seems to have played out in court as well.

Rovner: Yeah, quite a story. Sandhya.

Raman: My extra credit this week is called “Black Women Weigh Emerging Risks of ‘Creamy Crack’ Hair Straighteners.” And it’s from Ronnie Cohen for KFF Health News and on BET. The story takes a look at the messaging and awareness related to increasing health risks that people are worried about related to relaxers or, you know, chemically straightened hair. And it’s something that is especially popular among Black women. I think it was really interesting that only about half of states have anti-hair-discrimination laws, and so a lot of women might be more eager to get their hair chemically straightened for various reasons, workplace or things like that. And there’s not a ton of research.

Rovner: Right. It’s not just that they think it looks better.

Raman: No, no. And there’s not a ton of research on the cancer risk, but personal care products like hair relaxers don’t have the same kind of approval process through the FDA as food and drugs. So, it just takes a look at some of the different things there and what different providers are kind of considering and watching out for.

Rovner: Yeah, it’s really kind of scary. Lauren.

Weber: I actually flagged one of Alice’s stories, which is, “CDC Investigators Find More TB Infections Linked to Bone Graft Materials,” and it details how a bunch of patients have tested positive for tuberculosis after receiving bone grafts. And one of them has died. And there’s 36 more that are being treated for tuberculosis. And I find this fascinating because I find the coverage of tuberculosis in this country totally not where it should be. I mean, TB is — there are a lot of cases in the U.S. It’s a highly infectious — I mean, not a lot; there’s like 10,000 — but there’s a lot more than people realize. And it can be latent and lie in wait and, you know, to have some sort of medical procedure and then find out that whatever was implanted in you has given you a very dangerous, highly infectious disease that could result in you having to quarantine for months, depending on what it is, is really alarming. And there’s a lot of accountability follow-up questions on this for the FDA, these bone graft companies. And it gets at, do we want to gut the FDA, that is hopefully trying to stop things like this, even if it’s not preventing it here? It just leads to a lot of accountability questions that I think are quite fascinating.

Rovner: Yeah, a lot a lot of things that people have not thought about. Well, my story this week is from Stat, but it’s not so much a story as it is an event. Aug. 1 would have been the 103rd birthday of Henrietta Lacks, who longtime listeners to the podcast will remember we talked about a few years back when the book about her life, “The Immortal Life of Henrietta Lacks,” was made into a movie. For those of you without such long memories, Henrietta Lacks was an African American woman from Baltimore who was admitted to Johns Hopkins Hospital for cervical cancer in 1951. She died later that year at age 31. But the doctors who treated her also harvested cells without her knowledge or permission that turned out to be the first-ever self-perpetuating cell line. So HeLa cells, as they are called, for Henrietta Lacks, have been used in more than 75,000 different studies since then and have led to the development of such breakthroughs as the polio vaccine, treatments for cancer, and even the mapping of the human genome. While Hopkins has given the cells away for free to researchers, many of the companies that have used them have developed products that have made them, the companies, very rich. But until this week, no one in Henrietta Lacks’ family ever profited from the enormous contribution that she made to medical science. This week, the family’s lawyers reached a confidential but presumably significant settlement with one of those companies, Thermo Fisher, which makes a wide range of scientific supplies. But this is not just about justice for the family of Henrietta Lacks; it’s about starting to recognize and atone for unethical medical research over many, many years, particularly on African Americans. A good birthday present indeed. OK, that is 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 producer, Francis Ying. Also as always, you can email us your comments or questions. We’re at [email protected]. Or you can still tweet me. I’m @jrovner. Sandhya.

Raman: I’m @SandhyaWrites.

Rovner: Lauren.

Weber: @LaurenWeberHP.

Rovner: Alice.

Ollstein: @AliceOllstein.

Rovner: We will be back in your feed next week. Until then, be healthy.

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