U.S. Immigration and Customs Enforcement agents have also shown up at community clinics. Health providers say that officers have tried to hosting a mobile clinic, waved a machine gun in the faces of clinicians serving the homeless, and hauled a passerby into an unmarked car outside a community health center.

In response to such immigration enforcement activity in and around clinics and hospitals, Democratic Gov. Gavin Newsom last month signed , which prohibits medical establishments from allowing federal agents without a valid search warrant or court order into private areas, including places where patients receive treatment or discuss health matters.

But while the bill received broad support from medical groups, health care workers, and immigrant rights advocates, legal experts say California can’t stop federal authorities from carrying out duties in public places, which include hospital lobbies and general waiting areas, health facility parking lots, and surrounding neighborhoods — places where recent ICE activities have sparked outrage and fear. Previous federal restrictions on immigration enforcement in or near sensitive areas, including health care establishments, were rescinded by the Trump administration in January.

“The issue that states encounter is the ,” said , a supervising attorney and clinical teaching fellow at Georgetown Law. She said the federal government does have the right to conduct enforcement activities, and there are limits to what the state can do to stop them.

California’s law designates a patient’s immigration status and birthplace as protected information, which like medical records cannot be disclosed to law enforcement without a warrant or court order. And it requires health care facilities to have clear procedures for handling requests from immigration authorities, including training staff to immediately notify a designated administrator or legal counsel if agents ask to enter a private area or review patient records.

Several other Democratic-led states have also taken up legislation to protect patients at hospitals and health centers. In May, Colorado Gov. Jared Polis signed the bill, which penalizes hospitals for unauthorized sharing of information about people in the country illegally and bars ICE agents from entering private areas of health care facilities without a judicial warrant. In Maryland, requiring the attorney general to create guidance on keeping ICE out of health care facilities went into effect in June. New Mexico has instituted , and Rhode Island has from asking patients about their immigration status.

Republican-led states have aligned with federal efforts to prevent health care spending on immigrants without legal authorization. Such immigrants are not eligible for comprehensive Medicaid coverage, but states do bill the federal government for in certain cases. Under a , Florida requires hospitals that accept Medicaid to ask about a patient’s legal status. In Texas, hospitals now have to report how much they spend on care for immigrants without legal authorization.

“Texans should not have to shoulder the burden of financially supporting medical care for illegal immigrants,” Gov. Greg Abbott said in issuing his last year.

California’s efforts to rein in federal enforcement come as the state, where more than a quarter of residents , has become a target of President Donald Trump’s immigration crackdown. Newsom signed SB 81 as part of a prohibiting immigration agents from entering schools without a warrant, requiring law enforcement officers to identify themselves, and banning officers from wearing masks. SB 81 was passed on a party-line vote with no formal opposition.

“We’re not North Korea,” Newsom said during a September bill-signing ceremony. “We’re pushing back against these authoritarian tendencies and actions of this administration.”

Some supporters of the bill and legal experts said California’s law can prevent ICE from violating existing patient privacy rights. Those include the Fourth Amendment, which without a warrant in places where people have a reasonable expectation of privacy. Valid warrants must be . But ICE agents frequently use administrative warrants to try to gain access to private areas they don’t have the authority to enter, Genovese said.

“People don’t always understand the difference between an administrative warrant, which is a meaningless piece of paper, versus a judicial warrant that is enforceable,” Genovese said. Judicial warrants are rarely issued in immigration cases, she added.

The Department of Homeland Security has said or identification requirements for law enforcement officers, slamming them as unconstitutional. The department did not respond to a request for comment on the state’s new rules for health care facilities, which went into immediate effect.

Tanya Broder, a senior counsel with the National Immigration Law Center, said immigration arrests at health care facilities appear to be relatively rare. But the federal decision to rescind protections around sensitive areas, she said, “has generated fear and uncertainty across the country.” Many of the most high-profile news reports of immigration agents at health care facilities have been in California, largely involving detained patients brought in for care.

The California Nurses Association, the state’s largest nurses union, was a co-sponsor of the bill and raised concerns about the treatment of Milagro Solis-Portillo, a 36-year-old Salvadoran woman who was under round-the-clock ICE surveillance at Glendale Memorial Hospital over the summer.

Union leaders also of agents at California Hospital Medical Center south of downtown Los Angeles. According to Anne Caputo-Pearl, a labor and delivery nurse and the chief union representative at the hospital, agents brought in a patient on Oct. 21 and remained in the patient’s room for almost a week. The reported that a TikTok streamer, Carlitos Ricardo Parias, was taken to the hospital that day after he was wounded during an immigration enforcement operation in South Los Angeles.

The presence of ICE was intimidating for nurses and patients, Caputo-Pearl said, and prompted visitor restrictions at the hospital. “We want better clarification,” she said. “Why is it that these agents are allowed to be in the room?”

Hospital and clinic representatives, however, said they are already following the law’s requirements, which largely reinforce put out by state Attorney General Rob Bonta in December.

Community clinics throughout Los Angeles County, which serve over 2 million patients a year, including a large portion of immigrants, have been implementing the attorney general’s guidelines for months, said Louise McCarthy, president and CEO of the Community Clinic Association of Los Angeles County. But she said the law should help ensure uniform standards across health facilities that clinics refer out to and reassure patients that procedures are in place to protect them.

Still, it can’t prevent immigration raids from happening in the broader community, which have made some patients and even health workers afraid to venture outside, McCarthy said. Some incidents have occurred near clinics, including an arrest of a passerby outside a clinic in East Los Angeles, which a security guard caught on video, she said.

“We’ve had clinic staff say, ‘Is it safe for me to go out?’” she said.

At St. John’s Community Health, a network of 24 community health centers and five mobile clinics in South Los Angeles and the Inland Empire, CEO Jim Mangia agreed that the new law can’t prevent all immigration enforcement activity, but he said it does give clinics a tool to push back if agents show up, something his staff has already had to do.

Mangia said St. John’s staff had two encounters with immigration agents over the summer. In one, he said, staff stopped armed officers from entering a gated parking lot at a drug and alcohol recovery center where doctors and nurses were seeing patients at a mobile health clinic.

Another occurred in July, when immigration agents MacArthur Park on horses and in armored vehicles, in a show of force by the Trump administration. Mangia said masked officers in full tactical gear surrounded a street medicine tent where St. John’s providers were tending to homeless patients, screamed at staff to get out, and pointed a gun at them. The providers were so shaken by the episode, Mangia said, that he had to bring in mental health professionals to help them feel safe going back out on the street.

A DHS spokesperson told CalMatters that in the rare instance where agents enter certain sensitive locations, officers would need “.”

Since then, St. John’s has doubled down on providing support and training to staff and has offered patients afraid to go out the option of home medical visits and grocery deliveries. Patient fears and ICE activity have decreased since the summer, Mangia said, but with DHS planning to , he doubts that will last.

ºÚÁϳԹÏÍø 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 .

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This story can be republished for free (details).

The Supreme Court this week ruled in favor of Tennessee’s law banning most gender-affirming care for minors — a law similar to those in two dozen other states.

Meanwhile, the Senate is still hoping to complete work on its version of President Donald Trump’s huge budget reconciliation bill before the July Fourth break. But deeper cuts to the Medicaid program than those included in the House-passed bill could prove difficult to swallow for moderate senators.

This week’s panelists are Julie Rovner of ºÚÁϳԹÏÍø News, Victoria Knight of Axios, Alice Miranda Ollstein of Politico, and Sandhya Raman of CQ Roll Call.

Panelists

Among the takeaways from this week’s episode:

• The Supreme Court’s ruling on gender-affirming care for transgender minors was relatively limited in its scope. The majority did not address the broader question about whether transgender individuals are protected under federal anti-discrimination laws and, as with the court’s decision overturning the constitutional right to an abortion, left states the power to determine what care trans youths may receive.
• The Senate GOP unveiled its version of the budget reconciliation bill this week. Defying expectations that senators would soften the bill’s impact on health care, the proposal would make deeper cuts to Medicaid, largely at the expense of hospitals and other providers. Republican senators say those cuts would allow them more flexibility to renew and extend many of Trump’s tax cuts.
• The Medicare trustees are out this week with a new forecast for the program that covers primarily those over age 65, predicting insolvency by 2033 — even sooner than expected. There was bipartisan support for including a crackdown on a provider practice known as upcoding in the reconciliation bill, a move that could have saved a bundle in government spending. But no substantive cuts to Medicare spending ultimately made it into the legislation.
• With the third anniversary of the Supreme Court decision overturning Roe v. Wade approaching, the movement to end abortion has largely coalesced around one goal: stopping people from accessing the abortion pill mifepristone.

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

Julie Rovner: The New York Times’ “,” by Alexandra Berzon, Nicholas Nehamas, and Tara Siegel Bernard.ÌýÌý

Victoria Knight: The New York Times’ “,” by Kashmir Hill.ÌýÌý

Alice Miranda Ollstein: Wired’s “,” by Emily Mullin.ÌýÌý

Sandhya Raman: North Carolina Health News and The Charlotte Ledger’s “,” by Michelle Crouch.ÌýÌý

Also mentioned in this week’s podcast:

• KFF’s “,” by Ashley Kirzinger, Lunna Lopes, Marley Presiado, Julian Montalvo III, and Mollyann Brodie.
• The Associated Press’ “,” by Kimberly Kindy and Amanda Seitz.
• The Guardian’s “,” by Aaron Glantz.

[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.]Ìý

Julie Rovner: Hello and welcome back to “What the Health?” I’m Julie Rovner, chief Washington correspondent for ºÚÁϳԹÏÍø News, and I’m joined by some of the best and smartest health reporters in Washington. We’re taping this week on Friday, June 20, at 10 a.m. As always, news happens fast and things might have changed by the time you hear this. So, here we go.Ìý

Today we are joined via videoconference by Alice Miranda Ollstein of Politico.Ìý

Alice Miranda Ollstein: Hello.Ìý

Rovner: Sandhya Raman of CQ Roll Call.Ìý

Sandhya Raman: Good morning.Ìý

Rovner: And Victoria Knight of Axios News.Ìý

Victoria Knight: Hello, everyone.Ìý

Rovner: No interview this week but more than enough news to make up for it, so we will go right to it. It is June. That means it is time for the Supreme Court to release its biggest opinions of the term. On Wednesday, the justices upheld Tennessee’s law banning gender-affirming medical care for trans minors. And presumably that means similar laws in two dozen other states can stand as well. Alice, what does this mean in real-world terms?Ìý

Ollstein: So, this is a blow to people’s ability to access gender-affirming care as minors, even if their parents support them transitioning. But it’s not necessarily as restrictive a ruling as it could have been. The court could have gone farther. And so supporters of access to gender-affirming care see a silver lining in that the court didn’t go far enough to rule that all laws discriminating against transgender people are fine and constitutional. A few justices more or less said that in their separate opinions, but the majority opinion just stuck with upholding this law, basically saying that it doesn’t discriminate based on gender or transgender status.Ìý

Rovner: Which feels a little odd.Ìý

Ollstein: Yes. So, obviously, many people have said, How can you say that laws that only apply to transgender people are not discriminatory? So, been some back-and-forth about that. But the majority opinion said, Well, we don’t have to reach this far and decide right now if laws that discriminate against transgender people are constitutional, because this law doesn’t. They said it discriminates based on diagnosis — so anyone of any gender who has the diagnosis of gender dysphoria for medications, hormones, that’s not a gender discrimination. But obviously the only people who do have those diagnoses are transgender, and so it was a logic that the dissenters, the three progressive dissenters, really ripped into.Ìý

Rovner: And just to be clear, we’ve heard about, there are a lot of laws that ban sort of not-reversible types of treatments for minors, but you could take hormones or puberty blockers. This Tennessee law covers basically everything for trans care, right?Ìý

Ollstein: That’s right, but only the piece about medications was challenged up to the Supreme Court, not the procedures and surgeries, which are much more rare for minors anyways. But it is important to note that some of the conservatives on the court said they would’ve gone further, and they basically said, This law does discriminate against transgender kids, and that is fine with us. And they said the court should have gone further and made that additional argument, which they did not at this time.Ìý

Rovner: Well, I’m sure the court will get another chance sometime in the future. While we’re on the subject of gender-affirming care in the courts, in Texas on Wednesday, conservative federal district judge Matthew Kacsmaryk — that’s the same judge who unsuccessfully tried to repeal the FDA’s [Food and Drug Administration’s] approval of the abortion pill a couple of years ago — has now ruled that the Biden administration’s expansion of the HIPAA [Health Insurance Portability and Accountability Act] medical privacy rules to protect records on abortion and gender-affirming care from being used for fishing expeditions by conservative prosecutors was an overreach, and he slapped a nationwide injunction on those rules. What could this mean if it’s ultimately upheld?Ìý

Ollstein: I kind of see this in some ways like the Trump administration getting rid of the EMTALA [Emergency Medical Treatment and Labor Act] guidance, where the underlying law is still there. This is sort of an interpretation and a guidance that was put out on top of it, saying, We interpret HIPAA, which has been around a long time, to apply in these contexts, because we’re in this brave new world where we don’t have Roe v. Wade anymore and states are seeking records from other states to try to prosecute people for circumventing abortion bans. And so, that wasn’t written into statute before, because that never happened before.Ìý

And so the Biden administration was attempting to respond to things like that by putting out this rule, which has now been blocked nationwide. I’m sure litigation will continue. There are also efforts in the courts to challenge HIPAA more broadly. And so, I would be interested in tracking how this plays into that.Ìý

Rovner: Yeah. There’s plenty of efforts sort of on this front. And certainly, with the advent of AI [artificial intelligence], I think that medical privacy is going to play a bigger role sort of as we go forward. All right. Moving on. While the Supreme Court is preparing to wrap up for the term, Congress is just getting revved up. Next up for the Senate is the budget reconciliation, quote, “Big Beautiful Bill,” with most of President [Donald] Trump’s agenda in it. This week, the Senate Finance Committee unveiled its changes to the House-passed bill, and rather than easing back on the Medicaid cuts, as many had expected in a chamber where just a few moderates can tank the entire bill, the Finance version makes the cuts even larger. Do we have any idea what’s going on here?Ìý

Knight: Well, I think mostly they want to give themselves more flexibility in order to pursue some of the tax policies that President Trump really wants. And so they need more savings, basically, to be able to do that and be able to do it for a longer amount of years. And so that’s kind of what I’ve heard, is they wanted to give themselves more room to play around with the policy, see what fits where. But a lot of people were surprised because the Senate is usually more moderate on things, but in this case I think it’s partially because they specifically looked at a provision called provider taxes. It’s a way that states can help fund their Medicaid programs, and so it’s a tax levied on providers. So I think they see that as maybe — it could still affect people’s benefits, but it’s aimed at providers — and so maybe that’s part of it as well.Ìý

Rovner: Well, of course aiming at providers is not doing them very much good, because hospitals are basically freaking out over this. Now there is talk of creating a rural hospital slush fund to maybe try to quell some of the complaints from hospitals and make some of those moderates feel better about voting for a bill that the Congressional Budget Office still says takes health insurance and food aid from the poor to give tax cuts to the rich. But if the Senate makes a slush fund big enough to really protect those hospitals, wouldn’t that just eliminate the Medicaid savings that they need to pay for those tax cuts, Victoria? That’s what you were just saying. That’s why they made the Medicaid cuts bigger.Ìý

Knight: Yeah. I think there’s quite a few solutions that people are throwing around and proposing. Yeah, but, exactly. Depending on if they do a provider relief fund, yeah, then the savings may need to go to that. I’ve also heard — I was talking to senators last week, and some of them were like, I’d rather just go back to the House’s version. So the House’s version of the bill put a freeze on states’ ability to raise the provider tax, but the Senate version incrementally lowers the amount of provider tax they can levy over years. The House just freezes it and doesn’t allow new ones to go higher. Some senators are like: Actually, can we just do that, go back to that? And we could live with that.Ìý

Even Sen. Josh Hawley, who has been one of the biggest vocal voices on concern for rural hospitals and concern for Medicaid cuts, he told me, Freeze would be OK with me. And so, I don’t know. I could see them maybe doing that, but we’ll see. There’s probably more negotiations going on over the weekend, and they’re also going to start the “Byrd bath” procedure, which basically determines whether provisions in the bill are related to the budget or not and can stay in the bill. And so, there’s actually gender-affirming care and abortion provisions in the bill that may get thrown out because of that. So—Ìý

Rovner: Yeah, this is just for those who don’t follow reconciliation the way we do, the “Byrd bath,” named for the former Sen. [Robert] Byrd, who put this rule in that said, Look, if you’re going to do this big budget bill with only 50 votes, it’s got to be related to the budget. So basically, the parliamentarian makes those determinations. And what we call the “Byrd bath” is when those on both sides of a provision that’s controversial go to the parliamentarian in advance and make their case. And the parliamentarian basically tells them in private what she’s going to do — like, This can stay in, or, This will have to go out. If the parliamentarian rules it has to go out, then it needs to overcome a budget point of order that needs 60 votes. So basically, that’s why stuff gets thrown out, unless they think it’s popular enough that it could get 60 votes. And sorry, that’s my little civics lesson for the day. Finish what you were saying, Victoria.Ìý

Knight: No, that was a perfect explanation. Thank you. But I was just saying, yeah, I think that there are still some negotiations going on for the Medicaid stuff. And where also, you have to remember, this has to go back to the House. And so it passed the House with the provider tax freeze, and that still required negotiations with some of the more moderate members of House Republicans. And some of them started expressing their concern about the Senate going further. And so they still need to — it has to go back through the House again, so they need to make these Senate moderates happy and House moderates happy. There’s also the fiscal conservatives that want deeper cuts. So there’s a lot of people within the caucus that they need to strike a balance. And so, I don’t know if this will be the final way the bill looks yet.Ìý

Rovner: Although, I think I say this every week, we have all of these Republicans saying: I won’t vote for this bill. I won’t vote for this bill. And then they inevitably turn around and vote for this bill. Do we believe that any of these people really would tank this bill?Ìý

Knight: That’s a great point. Yeah. Sandhya, go ahead.Ìý

Raman: There are at least a couple that I don’t think, anything that we do, they’re not going to change their mind. There is no courting of Rep. [Thomas] Massie in the House, because he’s not going to vote for it. I feel like in the Senate it’s going to be really hard to get Rand Paul on board, just because he does not want to raise the deficit. I think the others, it’s a little bit more squishy, depends kind of what the parliamentarian pulls out. And I guess also one thing I’m thinking about is if the things they pull out are big cost-savers and they have to go back to the drawing board to generate more savings. We’ve only had a few of the things that they’ve advised on so far, but it’s not health, and we still need to see — health are the big points. So, I think—Ìý

Rovner: Well, they haven’t started the “Byrd bath” on the Finance provisions—Ìý

Raman: Yes, or—Ìý

Rovner: —which is where all the health stuff is.Ìý

Raman: Yeah.Ìý

Knight: But that is supposed to be over the weekend. It’s supposed to start over the weekend.Ìý

Raman: Yes.Ìý

Rovner: Right.Ìý

Raman: Yeah. So, I think, depending on that, we will see. Historically, we have had people kind of go back and forth. And even with the House, there were people that voted for it that then now said, Well, I actually don’t support that anymore. So I think just going back to just what the House said might not be the solution, either. They have to find some sort of in-between before their July Fourth deadline.Ìý

Rovner: I was just going to say, so does this thing happen before July Fourth? I noticed that that Susie Wiles, the White House chief of staff said: Continue. It needs to be on the president’s desk by July Fourth. Which seems pretty nigh impossible. But I could see it getting through the Senate by July Fourth. I’m seeing some nods. Is that still the goal?Ìý

Knight: Yeah. I think that’s the goal. That’s what Senate Majority Leader [John] Thune has been telling people. He wants to try to pass it by mid-, or I think start the process by, midweek. And then it’s going to have to go through a “vote-a-rama.” So Democrats will be able to offer a ton of amendments. It’ll probably go through the night, and that’ll last a while. And so, I saw some estimate, maybe it’ll get passed next weekend through the Senate, but that’s probably if everything goes as it’s supposed to go. So, something could mess that up.Ìý

But, yeah, I think the factor here that has — I think everyone’s kind of been like: They’re not going to be able to do it. They’re not going to be able to do it. With the House, especially — the House is so rowdy. But then, when Trump calls people and tells them to vote for it, they do it. There’s a few, yeah, like Rand Paul and Massie — they’re basically the only ones that will not vote when Trump tells them to. But other than that — so if he wants it done, I do think he can help push to get it done.Ìý

Rovner: Yeah. I noticed one change, as I was going through, in the Senate bill from the House bill is that they would raise the debt ceiling to $5 trillion. It’s like, that’s a pretty big number. Yeah. I’m thinking that alone is what says Rand Paul is a no. Before we move on, one more thing I feel like we can’t repeat enough: This bill doesn’t just cut Medicaid spending. It also takes aim at the Affordable Care Act and even Medicare. And a bunch of this week show that even Republicans aren’t super excited about this bill. Are Republican members of Congress going to notice this at some point? Yeah, the president is popular, but this bill certainly isn’t.Ìý

Raman: When you look at some of the town halls that they’ve had — or tried to have — over the last couple months and then scaled back because there was a lot of pushback directly on this, the Medicaid provisions, they have to be aware. But I think if you look at that polling, if you look at the people that identify as MAGA within Republicans, it’s popular for them. It’s just more broadly less popular. So I think that’s part of it, but—Ìý

Ollstein: I think that people are very opposed to the policies in the bill, but I also think people are very overwhelmed and distracted right now. There’s a lot going on, and so I’m not sure there will be the same national focus on this the way there was in 2017 when people really rallied in huge ways to protect the Affordable Care Act and push Congress not to overturn it. And so I think maybe that could be a factor in that outrage not manifesting as much. I also think that’s a reason they’re trying to do this quickly, that July Fourth deadline, before those protest movements have an opportunity to sort of organize and coalesce.Ìý

Just real quickly on the rural hospital slush fund, I saw some smart people comparing it to a throwback, the high-risk pools model, in that unless you pour a ton of funding into it, it’s not going to solve the problem. And if you pour a ton of funding into it, you don’t have the savings that created the problem in the first place, the cuts. And all that is to say also, how do we define rural? A lot of suburban and urban hospitals are also really struggling currently and would be subject to close. And so now you get into the pitting members and districts against each other, because some people’s hospitals might be saved and others might be left out in the cold. And so I just think it’s going to be messy going forward.Ìý

Rovner: I spent a good part of the late ’80s and early ’90s pulling out of bills little tiny provisions that would get tucked in to reclassify hospitals as rural so they could qualify, because there are already a lot of programs that give more money to rural hospitals to keep them open. Sorry, Victoria, we should move on, but you wanted to say one more thing?Ìý

Knight: Oh, yeah. No. I was just going to say, going back to the unpopularity of the bill based on polling, and I think that we’ll see at least Democrats — if Republicans get this done and they have the work requirements and the other cuts to Medicaid in the bill, cuts to ACA, no renewal of premium tax credits — I think Democrats will really try to make the midterms about this, right? We already are seeing them messaging about it really hardcore, and obviously the Democrats are trying to find their way right now post-[Joe] Biden, post-[Kamala] Harris. So I think they’ll at least try to make this bill the thing and see if it’s unpopular with the general public, what Republicans did with health care on this. So we’ll see if that works for them, but I think they’re going to try.Ìý

Rovner: Yeah, I think you’re right. Well, speaking of Medicare, we got the annual trustees report this week, and the insolvency date for Medicare’s Hospital Insurance Trust Fund has moved up to 2033. That’s three years sooner than predicted last year. Yet there’s nothing in the budget reconciliation bill that would address that, not even a potentially bipartisan effort to go after upcoding in Medicare Advantage that we thought the Finance Committee might do, that would save money for Medicare that insurers are basically overcharging the government for. What happened to the idea of going after Medicare Advantage overpayments?Ìý

Knight: My general vibe I got from asking senators was that Trump said, We’re not touching Medicare in this bill. He did not want that to happen. And I think, again, maybe potentially thinking about the midterms, just the messaging on that, touching Medicare, it kind of always goes where they don’t want to touch Medicare, because it’s older people, but Medicaid is OK, even though it’s poor people.Ìý

Rovner: And older people.Ìý

Ollstein: And they are touching Medicare in the bill anyway.Ìý

Rovner: Thank you. I know. I think that’s the part that makes my head swim. It’s like, really? There are several things that actually touch Medicare in this bill, but the thing that they could probably save a good chunk of money on and that both parties agree on is the thing that they’re not doing.Ìý

Knight: Exactly. It was very bipartisan.Ìý

Rovner: Yes. It was very bipartisan, and it’s not there. All right. Moving on. Elon Musk has gone back to watching his SpaceX rockets blow up on the launchpad, which feels like a fitting metaphor for what’s been left behind at the Department of Health and Human Services following some of the DOGE [Department of Government Efficiency] cuts. On Monday, a federal judge in Massachusetts ruled that billions of dollars in cuts to about 800 NIH [National Institutes of Health] research grants due to DEI [diversity, equity, and inclusion] were, quote, “arbitrary and capricious” and wrote, quote, “I’ve never seen government racial discrimination like this.” And mind you, this was a judge who was appointed by [President] Ronald Reagan. So what happens now? It’s been months since these grants were terminated, and even though the judge has ordered the funding restored, this obviously isn’t the last word, and one would expect the administration’s going to appeal, right? So these people are just supposed to hang out and wait to see if their research gets to continue?Ìý

Raman: This has been a big thing that has come up in all of the appropriations hearings we’ve had so far this year, that even though the gist of that is to look forward at the next year’s appropriations, it’s been a big topic of just: There is funding that we as Congress have already appropriated for this. Why isn’t it getting distributed? So I think that will definitely be something that they push back up on the next ones of those. Some of the different senators have said that they’ve been looking into it and how it’s been affecting their districts. So I would say that. But I think the White House in response to that called the decision political, which I thought was interesting given, like you said, it was a Reagan appointee that said this. So it’ll definitely be something that I think will be appealed and be a major issue.Ìý

Ollstein: Yeah, and the folks I’ve talked to who’ve been impacted by this stress that you can’t flip funding on and off like a switch and expect research to continue just fine. Once things are halted, they’re halted. And in a lot of cases, it is irreversible. Samples are thrown out. People are laid off. Labs are shut down. Even if there’s a ruling that reverses the policy, that often comes too late to make a difference. And at the same time, people are not waiting around to see how this back-and-forth plays out. People are getting actively recruited by universities and other countries saying: Hey, we’re not going to defund you suddenly. Come here. And they’re moving to the private sector. And so I think this is really going to have a long impact no matter what happens, a long tail.Ìý

Rovner: And yet we got another reminder this week of the major advances that federally funded research can produce, with the FDA approval of a twice-a-year shot that can basically prevent HIV infection. Will this be able to make up maybe for the huge cuts to HIV programs that this administration is making?Ìý

Raman: It’s only one drug, and we have to see what the price is, what cost—Ìý

Rovner: So far the price is huge. I think I saw it was going to be like $14,000 a shot.Ìý

Raman: Which means that something like PrEP [pre-exposure prophylaxis] is still going to be a lot more affordable for different groups, for states, for relief efforts. So I think that it’s a good step on the research front, but until the price comes down, the other tools in the toolbox are going to be a lot more feasible to do.Ìý

Rovner: Yeah. So much for President Trump’s goal to end HIV. So very first-term. All right. Well, turning to abortion, it’s been almost exactly three years since the Supreme Court overturned the nationwide right to abortion in the Dobbs case. In that time we’ve seen abortion outlawed in nearly half the states but abortions overall rise due to the expanded use of abortion medication. We’ve seen doctors leaving states with bans, for fear of not being able to provide needed care for patients with pregnancy complications. And we’ve seen graduating medical students avoiding taking residencies in those states for the same reason. Alice, what’s the next front in the battle over abortion in the U.S.?Ìý

Ollstein: It’s been one of the main fronts, even before Dobbs, but it’s just all about the pills right now. That’s really where all of the attention is. So whether that’s efforts ongoing in the courts back before our friend Kacsmaryk to try to challenge the FDA’s policies around the pills and impose restrictions nationwide, there’s efforts at the state level. There’s agitation for Congress to do something, although I think that’s the least likely option. I think it’s much more likely that it’s going to come from agency regulation or from the courts or from states. So I would put Congress last on the list of actors here. But I think that’s really it. And I think we’re also seeing the same pattern that we see in gender-affirming care battles, where there’s a lot of focus on what minors can access, what children can access, and that then expands to be a policy targeting people of any age.Ìý

So I think it’s going to be a factor. One thing I think is going to slow down significantly are these ballot initiatives in the states. There’s only a tiny handful of states left that haven’t done it yet and have the ability to do it. A lot of states, it’s not even an option. So I would look at Idaho for next year, and Nevada. But I don’t think you’re going to see the same storm of them that you have seen the last few years. And part of that is, like I said, there’s just fewer left that have the ability. But also some people have soured on that as a tactic and feel that they haven’t gotten the bang for the buck, because those campaigns are extremely expensive, extremely resource-intensive. And there’s been frustration that, in Missouri, for instance, it’s sort of been — the will of the people has sort of been overturned by the state government, and that’s being attempted in other states as well. And so it has seemed to people like a very expensive and not reliable protection, although I’m not sure in some states what the other option would even be.Ìý

Rovner: Of course the one thing that is happening on Capitol Hill is that the House Judiciary Committee last week voted to repeal the 1994 Freedom of Access to Clinic Entrances Act, or FACE. Now this law doesn’t just protect abortion clinics but also anti-abortion crisis pregnancy centers. This feels like maybe not the best timing for this sort of thing, especially in light of the shootings of lawmakers in Minnesota last weekend, where the shooter reportedly had in his car a list of abortion providers and abortion rights supporters. Might that slow down this FACE repeal effort?Ìý

Ollstein: I think it already was going to be an uphill battle in the Senate and even maybe passing the full House, because even some conservatives say, Well, I don’t know if we should get rid of the FACE Act, because the FACE Act also applies to conservative crisis pregnancy centers. And lest we forget, only a few short weeks ago, an IVF [in vitro fertilization] clinic was bombed, and it would’ve applied in that situation, too. And so some conservatives are divided on whether or not to get rid of the FACE Act. And so I don’t know where it is going forward, but I think these recent instances of violence certainly are not helping the efforts, and the Trump administration has already said they’re not really going to enforce FACE against people who protest outside of abortion clinics. And so that takes some of the heat off of the conservatives who want to get rid of it. Of course, they say it shouldn’t be left for a future administration to enforce, as the Biden administration did.Ìý

Raman: It also applies to churches, which I think if you are deeply religious that could also be a point of contention for you. But, yeah, I think just also with so much else going on and the fact that they’ve kind of slowed down on taking some of these things up for the whole chamber to vote on outside of in January, I don’t really see it coming up in the immediate future for a vote.Ìý

Rovner: Well, at the same time, there are efforts in the other direction, although the progress on that front seems to be happening in other countries. The British Parliament this week voted to decriminalize basically all abortions in England and Wales, changing an 1861 law. And here on this side of the Atlantic, four states are petitioning the FDA to lift the remaining restrictions on the abortion pill, mifepristone, even as — Alice, as you mentioned — abortion foes argue for its approval to be revoked. You said that the abortion rights groups are shying away from these ballot measures even if they could do it. What is going to be their focus?Ìý

Ollstein: Yeah, and I wouldn’t say they’re shying away from it. I’ve just heard a more divided view as a tactic and whether it’s worth it or not. But I do think that these court battles are really going to be where a lot is decided. That’s how we got to where we are now in the first place. And so the effort to get rid of the remaining restrictions on the abortion pill, the sort of back-and-forth tug here, that’s also been going on for years and years, and so I think we’re going to see that continue as well. And I think there’s also going to be, parallel to that, a sort of PR war. And I think we saw that recently with anti-abortion groups putting out their own not-peer-reviewed research to sort of bolster their argument that abortion pills are dangerous. And so I think you’re going to see more things like that attempting to — as one effort goes on in court, another effort in parallel in the court of public opinion to make people view abortion pills as something to fear and to want to restrict.Ìý

Rovner: All right. Well, finally this week, a couple of stories that just kind of jumped out at me. First, the AP [Associated Press] that Medicaid officials, over the objections of some at the agency, have turned over to the Department of Homeland Security personal data on millions of Medicaid beneficiaries, including those in states that allow noncitizens to enroll even if they’re not eligible for federal matching funds, so states that use their own money to provide insurance to these people. That of course raises the prospect of DHS using that information to track down and deport said individuals. But on a broader level, one of the reasons Medicaid has been expanded for emergencies and in some cases for noncitizens is because those people live here and they get sick. And not only should they be able to get medical care because, you know, humanity, but also because they may get communicable diseases that they can spread to their citizen neighbors and co-workers. Is this sort of the classic case of cutting off your nose despite your face?Ìý

Ollstein: I think we saw very clearly during covid and during mpox and measles, yes. What impacts one part of the population impacts the whole population, and we’re already seeing that these immigration crackdowns are deterring people, even people who are legally eligible for benefits and services staying away from that. We saw that during Trump’s first term with the public charge rule that led to people disenrolling in health programs and avoiding services. And that effect continued. There’s research out of UCLA showing that effect continued even after the Biden administration got rid of the policy. And so fear and the chilling effect can really linger and have an impact and deter people who are citizens, are legal immigrants, from using that as well. It’s a widespread impact.Ìý

Rovner: And of course, now we see the Trump administration revoking the status of people who came here legally and basically declaring them illegal after the fact. Some of this chilling effect is reasonable for people to assume. Like the research being cut off, even if these things are ultimately reversed, there’s a lot of — depends whether you consider it damage or not — but a lot of the stuff is going to be hard. You’re not going to be able to just resume, pick up from where you were.Ìý

Ollstein: And one concern I’ve been hearing particularly is around management of bird flu, since a lot of legal and undocumented workers work in agriculture and have a higher likelihood of being exposed. And so if they’re deterred from seeking testing, seeking treatment, that could really be dangerous for the whole population.Ìý

Rovner: Yeah. It is all about health. It is always all about health. All right. Well, the last story this week is from The Guardian, and it’s called “.” And it’s yet another example of how purging DEI language can at least theoretically get you in trouble. It’s not clear if VA [Department of Veterans Affairs] personnel can now actually discriminate against people because of their political party or because they’re married or not married. The administration says other safeguards are still in place, but it is another example of how sweeping changes can shake people’s confidence in government programs. I imagine the idea here is to make people worried about discrimination and therefore less likely to seek care, right?Ìý

Raman: It’s also just so unusual. I have not heard of anything like this before in anything that we’ve been reporting, where your political party is pulled into this. It just seems so out of the realm of what a provider would need to know about you to give you care. And then I could see the chilling effect in the same way, where if someone might want to be active on some issue or share their views, they might be more reluctant to do so, because they know they have to get care. And if that could affect their ability to do so, if they would have to travel farther to a different VA hospital, even if they aren’t actually denying people because of this, that chilling effect is going to be something to watch.Ìý

Rovner: And this is, these are not sort of theoretical things. There was a case some years ago about a doctor, I think he was in Kentucky, who wouldn’t prescribe birth control to women who weren’t married. So there was reason for having these protections in there, even though they are not part of federal anti-discrimination law, which is what the Trump administration said. Why are these things in there? They’re not required, so we’re going to take them out. That’s basically what this fight is over. But it’s sort of an — I’m sure there are other places where this is happening. We just haven’t seen it yet.Ìý

All right, well, that is this week’s news. Now it’s time for our extra-credit segment. That’s where we each recognize the story we read this week we think you should read, too. Don’t worry if you miss it. We will put the links in our show notes on your phone or other mobile device. Victoria, why don’t you go first this week?Ìý

Knight: Sure thing. My extra credit, it’s from The New York Times. The title is, “,” by Kashmir Hill, who covers technology at The Times. I had seen screenshots of this article being shared on X a bunch last week, and I was like, “I need to read this.”Ìý

Basically it shows that different people who, they may be going through something, they may have a lot of stress, or they may already have a mental health condition, and they start messaging ChatGPT different things, then ChatGPT can kind of feed into their own delusions and their own misaligned thinking. That’s because that’s kind of how ChatGPT is built. It’s built to be, like, they call it in the story, like a sycophant. Is that how you say it? So it kind of is supposed to react positively to what you’re saying and kind of reinforce what you’re saying. And so if you’re feeding it delusions, it will feed delusions back. And so it was really scary because real-life people were impacted by this. There was one individual who thought he was talking to — had found an entity inside of ChatGPT named Juliet, and then he thought that OpenAI killed her. And so then he ended up basically being killed by police that came to his house. It was just — yeah, there was a lot of real-life effects from talking to ChatGPT and having your own delusions reinforced. So, and so it was just an effect of ChatGPT on real-life people that I don’t know if we’ve seen illustrated in a news story yet. And so it was very illuminating, yeah.Ìý

Rovner: Yeah. Not scary much. Sandhya.Ìý

Raman: My extra credit was “.” It’s by Michelle Crouch for The Charlotte Ledger [and North Carolina Health News]. It’s a story about how some different ambulance patients from North Carolina are finding out that their income gets tapped for debt collection by the state’s EMS agencies, which are government entities, mostly. So the state can take through the EMS up to 10% of your monthly paycheck, or pull from your bank account higher than that, or pull from your tax refunds or lottery winnings. And it’s taking some people a little bit by surprise after they’ve tried to pay off this care and having to face this, but something that the agencies are also saying is necessary to prevent insurers from underpaying them.Ìý

Rovner: Oh, sigh.Ìý

Raman: Yeah.Ìý

Rovner: The endless stream of really good stories on this subject. Alice.Ìý

Ollstein: So I chose this piece in Wired by Emily Mullin called “,” thinking a lot about my hometown of Los Angeles, which is under heavy ICE [Immigration and Customs Enforcement] enforcement and National Guard and Marines and who knows who else. So this article is talking about the health impacts of so-called less-lethal police tactics like rubber bullets, like tear gas. And it is about how not only are they sometimes actually lethal — they can kill people and have — but also they have a lot of lingering impacts, especially tear gas. It can exacerbate respiratory problems and even cause brain damage. And so it’s being used very widely and, in some people’s view, indiscriminately right now. And there should be more attention on this, as it can impact completely innocent bystanders and press and who knows who else.Ìý

Rovner: Yeah. There’s a long distance between nonlethal and harmless, which I think this story illustrates very well. My extra credit this week is also from The New York Times. It’s called “,” by Alexandra Berzon, Nicholas Nehamas, and Tara Siegel Bernard. It’s about how the White House basically forced Social Security officials to peddle a false narrative that said 40% of calls to the agency’s customer service lines were from scammers — they were not — how DOGE misinterpreted Social Security data and gave a 21-year-old intern access to basically everyone’s personal Social Security information, and how the administration shut down some Social Security offices to punish lawmakers who criticized the president. This is stuff we pretty much knew was happening at the time, and not just in Social Security. But The New York Times now has the receipts. It’s definitely worth reading.Ìý

OK. That is this week’s show. Thanks as always to our editor, Emmarie Huetteman, and our producer-engineer, Francis Ying. Also, 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. You can email us your comments or questions. We’re at whatthehealth@kff.org. Or you can find me still on X, , or on Bluesky, . Where are you guys hanging these days? Sandhya.Ìý

Raman: @SandhyaWrites and the same .Ìý

Rovner: Alice.Ìý

Ollstein: on Bluesky and on X.Ìý

Rovner: Victoria.Ìý

Knight: I am on X.Ìý

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

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Brought by an anonymous whistleblower and later joined by Texas Attorney General Ken Paxton, the suit alleges the Planned Parenthood Federation of America and three Planned Parenthood affiliates defrauded the Texas and Louisiana Medicaid programs by collecting $17 million for services provided while it fought state efforts to remove it as an approved provider.

The suit claims violations of the False Claims Act, an obscure but powerful law protecting the government from fraud, and seeks $1.8 billion in penalties from Planned Parenthood, according to a motion that lawyers for the whistleblower filed in federal court in 2023.

The lawsuit builds on efforts over years by the religious right and politicians who oppose abortion to deliver blows to Planned Parenthood — which provides sexual and reproductive health care at nearly 600 sites nationwide — now bolstered by Leo’s work reshaping the American judiciary.

Anti-abortion groups and their allies secured a generational victory in 2022 when the Supreme Court overturned Roe v. Wade, which ended the constitutional right to abortion and paved the way for bans or severe restrictions in 20 states. The court challenge in Texas demonstrates how the forces behind the end of Roe threaten access to other health and family planning services.

The Planned Parenthood clinics being sued do not provide abortions. They are in Texas and Louisiana, which banned nearly all abortions, respectively, in 2021 and 2022.

Leo, an anti-abortion Catholic, is connected to the key players in the Texas lawsuit — the whistleblower plaintiff, an attorney general, and the judge — according to a ºÚÁϳԹÏÍø News review of tax records, court documents from multiple lawsuits, statements to lawmakers, and website archives.

Leo provided legal counsel to the anti-abortion group at its center, and he has financial and other connections to Paxton.

They filed the case in federal court in Amarillo, Texas, where Matthew Kacsmaryk is the only judge. He is a , the conservative legal juggernaut for which Leo has worked for over 25 years in various capacities and currently serves as co-chair.

Kacsmaryk’s rulings have curtailed access to reproductive health since the Senate confirmed him in 2019. He suspended the FDA’s approval of mifepristone, a drug used in medication abortion, propelling the issue to the Supreme Court, which ultimately threw out the case. In another case, Kacsmaryk ruled to limit young people’s access to birth control through a federal family planning program.

Leo did not respond to questions for this article and a spokesperson declined to comment. Through a court spokesperson, Kacsmaryk declined to comment for this article.

The anonymous whistleblower in 2021 accused the Planned Parenthood Federation of America and Planned Parenthood affiliates of defrauding the Medicaid programs of Texas and Louisiana. Paxton, who has repeatedly acted to thwart abortion rights and joined the case in 2022, alleges in the lawsuit that clinics received payments they weren’t entitled to from Texas Medicaid from early 2017 to early 2021 as the state was pushing to end Planned Parenthood’s status as a Medicaid provider. Louisiana and the Department of Justice have not joined the complaint.

The lawsuit’s origins go back a decade. The anonymous whistleblower, between 2013 and 2015, “conducted an undercover investigation to determine whether Planned Parenthood’s fetal tissue procurement practices were continuing, and if they were legal and/or ethical,” according to the whistleblower’s complaint filed in 2021.

The explanation mimics how the Center for Medical Progress, a California-based anti-abortion group founded by activist David Daleiden in 2013, “The Human Capital project is a 30-month-long investigative journalism study by The Center for Medical Progress, documenting how Planned Parenthood sells the body parts of aborted babies,” the group .

In a November 2022 court order, Kacsmaryk said the private party initiating the lawsuit is “the president of CMP,” the title Daleiden held at that time, according to a Center for Medical Progress tax filing.

The Center for Medical Progress and Daleiden did not respond to requests for comment.

By law, federal funds can’t pay for abortions unless the pregnancy threatens the life of a woman or is the result of rape or incest, but the program reimburses for other care such as contraception, screenings for sexually transmitted infections, and cancer screenings. Medicaid, which provides health coverage for people with low incomes, is jointly financed by states and the federal government.

According to its , Planned Parenthood affiliate clinics provided 9.13 million health care services to 2.05 million patients nationally in 2022. Testing and treatment for sexually transmitted infections accounted for about half of those services, contraception amounted to a quarter, and abortions constituted 4%.

Planned Parenthood Gulf Coast, which operates clinics in Texas and Louisiana, is among the branches Paxton and the whistleblower are suing. From July 2022 to June 2023, its clinics provided patients more than 86,000 tests for sexually transmitted infections, 44,000 visits for birth control, and nearly 7,000 cancer screening and prevention services, CEO Melaney Linton told ºÚÁϳԹÏÍø News.

“All of these services and more are at risk in this politically motivated lawsuit,” Linton said. The lawsuit’s allegations “are false. Planned Parenthood did not commit Medicaid fraud.”

Linton has said the : “trying to shut Planned Parenthood down.”

Texas terminated Planned Parenthood’s Medicaid participation in March 2021. Until then, affiliates “were entitled to receive reimbursement” for services to Medicaid patients because their provider agreements with Texas’ Medicaid program were valid, attorneys for the Planned Parenthood clinics wrote in a February 2023 court filing in support of their motion for summary judgment.

Louisiana has not removed Planned Parenthood from its Medicaid program.

Leo served as legal counsel to the Center for Medical Progress, according to documents produced as part of a separate lawsuit Planned Parenthood filed in federal court in California against the anti-abortion group. Among those, a July 2018 document lists 25 emails Leo and Daleiden traded in June and July 2015, including in the days before the anti-abortion group released its first video.

Paxton’s ties to Leo can be traced back at least a decade to when the former state senator and rising conservative star was about to begin his first term as attorney general.

In 2014, Leo, then executive vice president of the Federalist Society, was a rare non-Texan named to Paxton’s attorney general transition advisory team. Tax filings show that the Concord Fund, one of several Leo-linked groups that spend money to influence elections and aren’t required to disclose their donors, gave $20.3 million from July 2014 through June 2023 to the Republican Attorneys General Association, the political nonprofit that works to elect Republicans as states’ top law enforcement officers. Known as RAGA, the group funneled more than $1.2 million to Paxton’s campaign over three election cycles from 2014 to 2022, Texas campaign finance records show.

Texas government officials knew the state was reimbursing Planned Parenthood clinics for medical services from 2017 to 2021, which renders the state’s argument that clinics violated the False Claims Act “without merit,” said Jacob Elberg, a professor at Seton Hall Law School and an expert in health care fraud.

The law is intended for situations “where essentially someone submits a claim for payment or keeps money that they’re not entitled to where they have information that the government doesn’t have,” Elberg said. “And they essentially know that if the government knew the truth, the government wouldn’t pay them or would be demanding money back.”

But with Planned Parenthood, “everything involved here happened out in the open,” Elberg said. “They were submitting bills and the government knew what was going on and was paying those bills.”

The plaintiffs’ arguments are a “tortured use” of the False Claims Act, said Sarah Saldaña, a former U.S. attorney for the Northern District of Texas.

“Things like this, which have these obvious political overtones, tend to undermine further the view of the public of the judicial courts system,” Saldaña said.

The office of the attorney general did not respond to requests for comment.

Anti-abortion groups support the Paxton lawsuit even though abortion is essentially outlawed in the Lone Star State. Planned Parenthood “is still a pro-abortion organization,” said John Seago, president of Texas Right to Life. Even though Planned Parenthood provides other care, “all of those services are tainted by their pro-abortion mindset,” he said.

“Planned Parenthood is a danger to Texans. We wish that Planned Parenthood didn’t have a single location within our state,” Seago said. “Whenever the state pays Planned Parenthood to do something, even if it’s a good service, we are building up their brand and giving them more reach into our Texas communities.”

Roughly three dozen Planned Parenthood clinics in Texas continue to provide non-abortion services like birth control and STI screenings. The $1.8 billion the whistleblower is seeking is equivalent to nearly 90% of Planned Parenthood’s annual revenue, according to its .

The Campaign Against Planned Parenthood

The Center for Medical Progress was little known in 2015 when it began releasing videos containing explosive allegations that Planned Parenthood was illegally selling tissue from aborted fetuses, which Planned Parenthood denies.

The group and Daleiden had ties to powerful anti-abortion organizations. They include Live Action, where Daleiden worked before creating the Center for Medical Progress, and Operation Rescue, the Kansas-based group that staged demonstrations against George Tiller’s abortion clinic in that state before a gunman killed the physician in 2009.

“The evidence I am gathering deeply implicates Planned Parenthood affiliates across the country in multiple felonies and can trigger severe legal and financial consequences for PP and their associates, while providing new justifications for state defunding efforts and turning public opinion against Planned Parenthood and abortion,” Daleiden wrote in a May 2013 email produced as part of the litigation Planned Parenthood brought in California. The subject line: “Meeting to Take Down PP.”

Texas tried to remove Planned Parenthood clinics from its Medicaid program following the center’s release of the undercover videos, a move that was part of a larger political firestorm. Roughly a dozen states launched investigations into the reproductive health provider, and Republicans in Congress renewed calls to strip Planned Parenthood of government funding.

Paxton made his feelings clear about abortion as he pursued an investigation of Planned Parenthood in Texas. , he said “the true abomination in all of this is the institution of abortion.”

“We are rightfully horrified by what we’ve seen on these videos,” Paxton said. “However these videos also serve as a larger reminder that, as a society, we’ve turned a blind eye to the gruesome horrors that occur in abortion clinics across America every single day. They remind us that this industry as a whole has lost the perspective of humanity.”

Planned Parenthood denied selling fetal tissue and other claims in the videos, some of which contained graphic footage. It said the videos were “deceptive” and heavily edited to be misleading. A grand jury in Texas cleared Planned Parenthood of wrongdoing.

Daleiden worked on the center’s “Human Capital Project” for years, receiving advice from Leo and his associates, according to the Center for Medical Progress’ website, and Daleiden’s email correspondence and other documents produced as part of the separate lawsuit in federal court in California.

The July 2018 document filed as part of the litigation in California describes emails between Leo and Daleiden as “providing legal communication with counsel regarding legal planning” and “for counsel to provide legal advice regarding investigative journalism methods and the legality of fetal tissue procurement practices,” among other descriptions. Daleiden sent one email to Leo “regarding legal planning” on July 13, 2015, the day before the Center for Medical Progress released its first video.

A November 2018 letter from the Center for Medical Progress’ lawyers stated “CMP was receiving legal advice” from Leo, as well as other conservative lawyers and organizations. Lawyers representing the center and Daleiden in a December 2018 legal filing said Leo “provided legal advice on how to ensure successful prosecutions of the criminal actors which CMP identified.”

In its defense, Planned Parenthood has said it billed the Texas Medicaid program for reimbursement for “” services from February 2017 to March 2021 as a participating Medicaid provider in the state.

In 2015 and 2017, federal courts in Louisiana and Texas blocked those states from terminating Planned Parenthood’s Medicaid provider agreements. Judge John deGravelles of the U.S. District Court for the Middle District of Louisiana said the state was prohibited “from suspending Medicaid payments to [Planned Parenthood Gulf Coast] for services rendered to Medicaid beneficiaries.”

The 5th Circuit Court of Appeals in November 2020 vacated the Texas and Louisiana injunctions, but the court never weighed in on clawing back Medicaid funds that had been paid to clinics. Texas terminated Planned Parenthood in March 2021, following a state court ruling.

Texas and the whistleblower argue that, once the court injunctions were lifted, Planned Parenthood’s termination from each state’s Medicaid program became effective years earlier — 2015 in Louisiana and 2017 in Texas — due to the dates that state officials gave clinics final notice.

Planned Parenthood has argued that it is under no obligation to return payments received while injunctions were in place. Kacsmaryk disagrees. In a recently unsealed summary judgment order in the case, the judge wrote that Planned Parenthood clinics “had an obligation to repay the government payments they received as a matter of law.”

The order was unsealed after attorneys for the Reporters Committee for Freedom of the Press intervened. The committee argued the public has a presumptive and constitutional right to access judicial records, and that Kacsmaryk’s stated concerns — which included the tainting of a potential jury pool or jeopardizing the safety of those involved in the lawsuit — didn’t justify keeping the document secret.

Kacsmaryk’s brief justification for sealing the document, contained in the order itself, “was very thin,” said Katie Townsend, legal director for the Reporters Committee for Freedom of the Press.

She said his decision to seal such an important document was “highly unusual” and “very troubling.”

“Those orders are almost always completely public,” she said.

What Paxton Gains

Paxton has publicly toyed with the idea of pursuing federal office, and former President Donald Trump has said should Trump return to the White House.

For Republicans in Texas, there are political benefits to going after Planned Parenthood, said Mark Jones, a political scientist at Rice University in Houston. “Doing anything punitive against Planned Parenthood and anything that would reduce the ability of Planned Parenthood to be active and effective in Texas is going to be greeted with near-universal consensus within the Republican primary electorate,” Jones said. “There’s no downside to it.”

The Republican Attorneys General Association, which can accept unlimited political donations that it distributes to candidates, is a Paxton supporter. Campaign finance records show it gave more than $730,000 to Paxton’s attorney general campaigns in 2014 and 2018.

Tax filings show that the Marble Freedom Trust, a political nonprofit where Leo serves as trustee and chair, gave the Concord Fund $100.9 million from May 2020 through April 2023. During the 2022 election cycle, the Concord Fund gave $6.5 million to RAGA, which then contributed $500,000 to Paxton’s campaign. It was tied as the highest contribution to the Texas attorney general, matched by a $500,000 contribution from a political action committee backed by conservative Texas billionaires, according to Transparency USA, a nonprofit that tracks spending in state politics.

RAGA has praised Leo’s role, calling him its “greatest champion.”

“Leonard Leo has helped shape the trajectory of RAGA and the conservative legal movement more than anyone else. As RAGA’s greatest champion, Leonard Leo reimagined the role of the state attorney general and promoted men and women dedicated to the persistence of the rule of law and the original meaning of the Constitution,” reads a RAGA website post from 2019 that has since been deleted.

“You want access to Leo because Leo gives you access to money,” said Chris Toth, former executive director of the National Association of Attorneys General.

In many conservative states like Texas, Toth said, “the issue is worrying about getting primaried. And that is where playing nice with Leonard Leo and the Concord Fund come in because if you’re on their side, basically, you’re going to have no problem getting reelected.”

The Concord Fund gave $4 million to RAGA between July 1, 2022, and June 30, 2023, four times what it gave the prior fiscal year.

Abortion rights supporters have warned that they anticipate ongoing reproductive health battles in Texas and beyond, with access to contraception, fertility services, and other types of care under threat.

As an example, some point to the Griswold v. Connecticut decision from 1965, in which the Supreme Court legalized the use of contraception among married couples. The high court ruled that a state law violated a constitutional right to privacy, a rationale that was central to Roe v. Wade eight years later.

In a 2017 speech at the Acton Institute, a conservative think tank, Leo criticized Griswold as a decision amounting to “the creation of rights found nowhere in the text or structure of the Constitution.”

The Planned Parenthood lawsuit in Texas is expected to go to trial, potentially this year. The central question is whether Planned Parenthood knowingly withheld money owed to the government.

All the while the public is expressing greater uncertainty about rights once considered constitutionally guaranteed. In a , 1 in 5 adults said the right to use contraception is threatened and likely to be overturned.

Fewer than half of adults considered it to be secure.

ºÚÁϳԹÏÍø 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 .

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Tia Freeman, a reproductive health organizer, leads workshops for Tennesseans on how to safely take medication abortion pills outside of medical settings.

Abortion is almost entirely illegal in Tennessee. Freeman, who lives near Nashville, said people planning to stop pregnancies have all sorts of reasons for wanting to do so without help from the formal health care system — including the cost of traveling to another state, challenge of finding child care, and fear of lost wages.

“Some people, it’s that they don’t have the support networks in their families where they would need to have someone drive them to a clinic and then sit with them,” said Freeman, who works for , a U.S.-based project of Women Help Women, an international nonprofit that advocates for abortion access.

“Maybe their family is superconservative and they would rather get the pills in their home and do it by themselves,” she said.

The new study is from Advancing New Standards in Reproductive Health, a research group based at the University of California-San Francisco. The researchers surveyed more than 7,000 people ages 15 to 49 from December 2021 to January 2022 and another 7,000-plus from June 2023 to July 2023.

Of the respondents who had attempted self-managed abortions, they found the percentage who used the abortion pill mifepristone was 11 in 2023 — up from 6.6 before the Supreme Court ended federal abortion rights in 2022.

One of the most common reasons for seeking a self-administered abortion was privacy concerns, said a study co-author, epidemiologist Lauren Ralph.

“So not wanting others to know that they were seeking or in need of an abortion or wanted to maintain autonomy in the decision,” Ralph said. “They liked it was something under their control that they could do on their own.”

, vice president of media and policy at Students for Life Action, a national anti-abortion group, said she doesn’t believe the study findings, which she said benefit people who provide abortion pills.

“It should surprise no one that the abortion lobby reports their business is doing well, without problems,” Hamrick said in an emailed statement.

Ralph said in addition to privacy concerns, state laws criminalizing abortion also weighed heavily on women’s minds.

“We found 6% of people said the reason they self-managed was because abortion was illegal where they lived,” Ralph said.

In the JAMA study, women who self-managed abortion attempts reported using a range of methods, including using drugs or alcohol, lifting heavy objects, and taking a hot bath. In addition, about 22% reported hitting themselves in the stomach. Nearly 4% reported inserting an object in their body.

The term “self-managed abortion” may conjure images of back-alley procedures from the 1950s and ’60s. But OB-GYN Laura Laursen, a family planning physician in Chicago, said self-managed abortions using medication abortion — the drugs mifepristone and misoprostol — are far safer, whether done inside or outside the health care system.

“They’re equally safe no matter which way you do it,” Laursen said. “It involves passing a pregnancy and bleeding, which is what happens when you have a miscarriage. If your body doesn’t have a miscarriage on its own, these are actually the medications we give women to pass the miscarriage.”

Since Roe’s end, more than 20 states have banned or further restricted abortion.

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, released July 26 by the state Department of Public Health and Human Services, would set requirements for facilities that perform abortions for or provide medication abortion to at least five patients a year, excluding hospitals and outpatient surgical centers. Clinics would have to meet minimum limits for the size of their rooms and hallways, submit to annual state inspections, maintain written patient transfer agreements with hospitals, and be led by a medical director who is a licensed physician.

Nurse practitioner Helen Weems, who runs All Families Healthcare in Whitefish, one of three organizations that provide abortions in Montana, said the proposed regulations were unnecessary and would limit access to abortion in the state.

“These requirements, including the requirement that abortion clinics have a physician medical director, are not about patient health or safety — they are purely about creating havoc and hardship for abortion providers,” said Weems, in 2018 to strike down a law requiring that abortions be performed only by physicians or physician assistants.

Many of the proposed rules are similar to laws and regulations passed in , and their supporters call them necessary safeguards for patient safety.

“Their objections to very reasonable requirements — like annual inspections, having lit exit pathways, and making sure a facility director is in good standing — show their disregard for the women who walk through their doors,” said Kelsey Pritchard, director of state public affairs for Susan B. Anthony Pro-Life America, a group opposed to abortion.

In the public notice of the rules, state health officials said most of the proposed requirements are based on those for outpatient surgical centers or on minimum standards imposed on all health care facilities and “represent the appropriate level of regulatory requirements to impose on abortion clinics.”

Health department spokesperson Holly Matkin said department officials can’t comment further because of pending litigation.

Abortion rights advocates say the rules would do nothing to protect patients while raising costs for clinics. They call such rules “, which stands for targeted restrictions on abortion providers.

“Laws targeting abortion providers result in closure disproportionately affecting independent abortion clinics and the communities they serve,” said Erin Grant, co-executive director of , an association representing independent abortion clinics.

Similar rules were popular in the 2010s among states whose political leaders opposed abortion, but few states have passed them Roe v. Wade in 2022, allowing for more restrictive state bans.

“They’re a blast from the past,” said , a women’s health policy analyst at KFF, a health information nonprofit that includes ºÚÁϳԹÏÍø News. “Their main goal was to make it difficult to provide abortion services.”

The Guttmacher Institute, a nonprofit abortion rights research group, cites TRAP laws as a main factor behind a from 2011 to 2017.

Attempts by Montana’s Republican-led legislature and Republican governor to pass an abortion ban or more severe restrictions on access have been stymied by a that extended the state constitution’s privacy protections to a person’s medical decisions — including abortion.

The proposed regulations were drafted to accompany a state law, , that creates licenses for clinics that perform abortions. It was among several anti-abortion laws the state passed in 2023 that the courts have blocked. Others include a ban on abortions after 15 weeks of pregnancy, a ban on dilation-and-evacuation procedures, and a measure that made it more difficult for the state’s Medicaid program to pay for abortions.

Weems, her clinic, and the in Missoula, which also provides abortions, sued to block the licensure law from taking effect, arguing it would unconstitutionally discriminate against abortion clinics by singling them out for regulation. Planned Parenthood, which provides abortions and has clinics in Billings, Great Falls, and Helena, is a plaintiff in lawsuits challenging other state anti-abortion laws.

granted All Families and Blue Mountain a temporary restraining order against HB 937 because the rules hadn’t yet been drafted. Now that they have been released, the rules go through a 30-day public comment period, including an Aug. 16 public hearing, before they can be finalized by the health department.

Judge Chris Abbott’s order blocks the law from taking effect until 60 days after the state health department adopts the regulations and both sides review them.

The Montana rules also would require the state to investigate any complaint against a clinic, and require clinics to keep employee and patient files that can be inspected by state regulators, conduct background checks and annual training of employees, and document that patients gave informed consent and were given a hotline number to help people who may be victims of sex trafficking or are being coerced into having an abortion.

Some of the rules could be waived depending on the scope of abortion services provided — for example, if a clinic has a policy not to abort a fetus over a certain gestational age, according to the draft.

It’s unclear what will happen to the licensure rules if they’re adopted and voters in November approve a ballot measure to amend the state constitution to explicitly protect abortion rights. The secretary of state’s deadline to certify the proposed constitutional amendment, , is Aug. 22, according to Richie Melby, a spokesperson for the office. Organizers say needed to place the question on the ballot.

The ballot initiative would say, in part, that the right to abortion “shall not be denied or burdened unless justified by a compelling government interest achieved by the least restrictive means.”

If both the constitutional amendment and the abortion license regulations are adopted, it would likely spark a legal battle around whether the rules are a justifiable burden, Gomez said.

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And CVS is not the only pharmacy sharing this kind of sensitive data.

We found trackers collecting browsing- and purchase-related data on websites of 12 of the U.S.’ biggest drugstores, including grocery store chains with pharmacies, and sharing the sensitive information with companies like Meta (formerly Facebook); Google, through its advertising and analytics products; and Microsoft, through its search engine, Bing.

The tracking tools, popularly called “pixels,” collect information while a website runs. That information is often sent to social media firms and used to target ads, either to you personally or to groups of people that resemble you in demographics or habits. In previous investigations, The Markup found pixels transmitting information from the , , , and .

Pharmacy retailer websites’ pixels send a shopper’s IP address — a sort of mailing address for a person’s computer or household internet — to social media giants and other firms. They also send cookies, a way of storing information in a user’s browser that in this case helps track a user from page to page as the user browses a retailer’s site. Cookies can sometimes also associate individuals on a site with their account on a social media platform. In addition to the IP address and cookies, the pixels often send information about what you’ve clicked or bought, including sensitive items, such as HIV tests.

“HIV testing is the gateway to HIV prevention and treatment services,” said Oni Blackstock, the founder of Health Justice and a former assistant commissioner for the New York City Bureau of HIV/AIDS Prevention and Control, in an interview.

“People living with HIV should have control over whether someone knows their status,” she said.

Many retailers shared other detailed interaction data with advertising platforms as well. Ten of the retailers we examined alerted at least one tech platform when shoppers clicked “add to cart” as they shopped for retail goods, a capacious category that included sensitive products like prenatal vitamins, pregnancy tests, and Plan B emergency contraception.

Supermarket giant Kroger, for instance, informed Meta, Bing, Twitter, Snapchat, and Pinterest when a shopper added Plan B to the cart, and informed Google and Nextdoor, a social media platform on which people from the same neighborhood gather in forums, that a shopper had visited the page for the item. Walmart informed Google’s advertising service when a shopper browsed the page of an HIV test, and Pinterest when that shopper added it to the cart.

A previous investigation from The Markup found that Kroger to track, analyze, and sell an array of data about customers to advertisers.

Using Chrome DevTools, a tool built into Google’s Chrome browser, The Markup and ºÚÁϳԹÏÍø News visited the websites of 12 of the U.S.’ biggest drugstores and examined their network traffic. This monitoring tool allowed us to see what information about shopping habits and, in some cases, prescriptions, were sent to third parties.

Over the course of the investigation, retailers frequently changed their trackers — sometimes activating them, sometimes removing them. Some retailers appeared to be taking steps to limit tracking on sensitive items.

For example, Walgreens’ website prevented some trackers from activating on the pages of some products, which included Plan B and HIV tests. This code didn’t prevent all tracking, though: Walgreens’ site continued sending Pinterest information about those sensitive items a user added to the cart.

Walgreens shared a new policy after learning of The Markup and ºÚÁϳԹÏÍø News’ findings. Spokesperson Fraser Engerman said that while the chain already had a “robust privacy program,” it would no longer share browsing data related to reproductive health and HIV testing. Engerman also told us that “Pinterest confirmed that the data will be deleted and that it has not been used for advertising purposes.” Crystal Espinosa, a spokesperson for Pinterest, said the company “can confirm that we will be deleting the data Walgreens requested.”

The Pharmacy vs. the Pharmacy Aisle

In the U.S., drugstores and grocery stores with associated pharmacies are only partially covered by the Health Insurance Portability and Accountability Act, or HIPAA. The prescriptions picked up from the pharmacy counter do have this protection.

But in a separate section, sometimes confusingly called the pharmacy aisle, stores also often sell over-the-counter medications, tests, and other health-related products. Consumers might think such purchases have similar protections to their prescriptions, but HIPAA only covers the pharmacy counter’s clinical operations, such as dispensing prescriptions and answering patients’ questions about medication.

This distinction can be confusing enough inside the brick-and-mortar location of a retailer. But the line can become even harder to make out on a website, which lacks the clarifying delineations of physical space.

What’s more, descriptions about what will happen with retail data are generally in retailers' privacy policies, which can usually be found in a link at the bottom of their webpages. The Markup and ºÚÁϳԹÏÍø News found them murky at best, and none of them were specific about the parts of the site that were covered by HIPAA and the parts that weren’t.

In the “Privacy Notice for California Residents” part of its , Kroger says it processes “personal information collected and analyzed concerning a consumer’s health.” But, the policy continues, the company does not “sell or share” that information. Other information is sold: According to the policy, in the last 12 months, the company sold or shared “protected classification characteristics” to outside entities like data brokers.

Kroger spokesperson Erin Rolfes said the company strives to be transparent and that, “in many cases, we have provided more information to our customers in our privacy notices than our peers.”

Brokering of general retail data is widespread. Our investigation found, though, that some websites shared sensitive clinical data with third parties even when that information would be protected at a HIPAA-covered pharmacy counter. Users attempting to schedule a vaccine appointment at Rite Aid, for example, must answer a survey first to gauge eligibility.

This investigation found that Rite Aid has sent Facebook responses to questions such as:

• Do you have a neurological disorder such as seizures or other disorders that affect the brain or have had a disorder that resulted from a vaccine?
• Do you have cancer, leukemia, AIDS, or any other immune system problem?
• Are you pregnant or could you become pregnant in the next three months?

The Markup and ºÚÁϳԹÏÍø News documented Rite Aid sharing this data with Facebook in December 2022. In February of this year, a based on similar findings was filed against the drugstore chain in California, alleging code on Rite Aid’s website sent Facebook the time of an appointment and an identifier for the appointment location, demographic information, and answers to questions about vaccination history and health conditions. Rite Aid has moved to dismiss the suit.

After the lawsuit was filed, The Markup and ºÚÁϳԹÏÍø News tested Rite Aid’s website again, and it was no longer sending answers to vaccination questions to Facebook.

Rite Aid isn’t the only company that sent answers to eligibility questionnaires to social media firms. Supermarkets Albertsons, Acme, and Safeway, which are owned by the same parent company, also sent answers to questions in their vaccination intake form — albeit in a format that requires cross-referencing the questionnaire’s source code to reveal the meaning of the data.

Using the Firefox web browser’s tool, and with the help of a patient with an active prescription at Rite Aid, ºÚÁϳԹÏÍø News and The Markup also found Rite Aid sending the names of patients’ specific prescriptions to Facebook. Rite Aid kept sharing prescription names even after the company stopped sharing answers to vaccination questions in response to the proposed class action (which did not mention the sharing of prescription information). Rite Aid did not respond to requests for comment, and as of June 23, the pixel was still present and sending the names of prescriptions to Facebook.

Other companies shared data about medications from other parts of their sites. Customers of Sam’s Club and Costco, for example, can search names of prescriptions on each retailer’s website to find the local pharmacy with the cheapest prices. But the two websites also sent the name of the medication the user searched for, along with the user’s IP address, to social media companies.

Many of the retailers The Markup and ºÚÁϳԹÏÍø News looked at did not respond to questions or declined to comment, including Costco and Sam’s Club. Albertsons said the company “continually” evaluates its privacy practices. CVS said it was compliant with “applicable laws.”

Kroger’s Rolfes wrote that the company’s “trackers disclose product information, which is not sensitive health information unless one or more inferences are made. Kroger does not make any inferences linking the product information collected or disclosed by trackers to an individual’s health condition.”

A Huge Regulatory Challenge

Pharmacies are just one facet of a huge health care sector. But the industry as a whole has been roiled by disclosures of tracking pixels picking up sensitive clinical data.

After an investigation by The Markup in June 2022 on hospital websites, regulatory and legal attention has homed in on the practice.

In December, the Department of Health and Human Services’ Office for Civil Rights advising health providers and insurers how pixel trackers’ use can be consistent with HIPAA. “Regulated entities are not permitted to use tracking technologies in a manner that would result in impermissible disclosures” of protected health information to tracking technology or other third-party vendors, according to the official bulletin. If implemented, the guidance would provide a path for the agency to regulate hospitals and other providers and fine those who don’t follow it. In an interview with an industry publication in late April, the director of the Office for Civil Rights said it would be for pixel use “hopefully soon.”

Lobbying groups are seeking to confine any regulatory fallout: The American Hospital Association, for example, sent a letter on May 22 to the Office for Civil Rights “suspend or amend” its guidance. The office, it claimed, was seeking to protect too much data.

This year the Federal Trade Commission has pursued action against , which offers prescription price comparisons, and , which offers online therapy, for alleged misuse of data from questionnaires and searches. The companies settled with the agency.

Health care providers have disclosed to the federal government the potential leakage of nearly 10 million patients’ data to various advertising partners, according to a review by The Markup and ºÚÁϳԹÏÍø News of breach notification letters and the Office for Civil Rights’ online database of breaches. That figure could be a low estimate: A new study in the journal Health Affairs found that, as of 2021, almost contained tracking technologies.

One prominent law firm, BakerHostetler, is defending hospitals in 26 legal actions related to the use of tracking technologies, lawyer Paul Karlsgodt, a partner at the firm, said this year. “We’ve seen an absolute eruption of cases,” he said.

Abortion- and pregnancy-related data is particularly sensitive and driving regulatory scrutiny. In the same webinar, Lynn Sessions, also with BakerHostetler, said the California attorney general’s office had made specific investigative requests to one of the firm’s clients about whether the client was sharing reproductive health data.

It’s unclear whether big tech companies have much interest in helping secure health data. Sessions said BakerHostetler had been trying to get Google and Meta to sign so-called business associate agreements. These agreements would bring the companies under the HIPAA regulatory umbrella, at least when handling data on behalf of hospital clients. “Both of them, at least at this juncture, have not been accommodating in doing that,” Sessions said. Google Analytics’ instructs customers to “refrain from using Google Analytics in any way that may create obligations under HIPAA for Google.”

Meta says it has tools that attempt to prevent the transfer of sensitive information like health data. In a to Sen. Mark Warner (D-Va.) obtained by ºÚÁϳԹÏÍø News and The Markup, Meta wrote that “the filtering mechanism is designed to prevent that data from being ingested into our ads.” What’s more, the letter noted, the social media giant reaches out to companies transferring potentially sensitive data and asks them to “evaluate their implementation.”

“I remain concerned the company is too passive in allowing individual developers to determine what is considered sensitive health data that should remain private,” Warner told The Markup and ºÚÁϳԹÏÍø News.

Meta’s claims in its letter to Warner have been repeatedly questioned. In 2020, the company itself that the filtering system was “not yet operating with complete accuracy.”

To test the filtering system, Sven Carlsson and Sascha Granberg, reporters for SR Ekot in Sweden, in Swedish, which sent fake, but plausible, health data to Facebook to see whether the company’s filtering systems worked as stated. “We weren’t warned” by Facebook, Carlsson said in an interview with ºÚÁϳԹÏÍø News and The Markup.

Carlsson and Granberg’s work also found European pharmacies engaged in activities similar to what The Markup and ºÚÁϳԹÏÍø News have found. The reporters caught a Swedish state-owned pharmacy . And a with The Guardian found the U.K.-based pharmacy chain LloydsPharmacy was sending sensitive data — including information about symptoms — to TikTok and Facebook.

In response to questions from ºÚÁϳԹÏÍø News and The Markup, Meta spokesperson Emil Vazquez said, “Advertisers should not send sensitive information about people through our Business Tools. Doing so is against our policies and we educate advertisers on properly setting up Business Tools to prevent this from occurring. Our system is designed to filter out potentially sensitive data it is able to detect.”

Meta did not respond to questions about whether it considered any of the information ºÚÁϳԹÏÍø News and The Markup found retailers sending to be “sensitive information,” whether any was actually filtered by the system, or whether Meta could provide metrics demonstrating the current accuracy of the system.

In response to our inquiries, Twitter sent a poop emoji, while TikTok and Pinterest said they had policies instructing advertisers not to pass on sensitive information. LinkedIn and Nextdoor did not respond.

Google spokesperson Jackie Berté said the company’s policies “prohibit businesses from using sensitive health information to target and serve ads” and that it worked to prevent such information from being used in advertising, using a “combination of algorithmic and human review” to remedy violations of its policy.

ºÚÁϳԹÏÍø News and The Markup presented Google with screenshots of its pixel sending the search company our browsing information when we landed on the retailers’ pages where we could purchase an HIV test and prenatal vitamins, and data showing when we added an HIV test to the cart. In response, Berté said the company had “not uncovered any evidence that the businesses in the screenshots are violating our policies.”

ºÚÁϳԹÏÍø News uses the Meta Pixel to collect information. The pixel may be used by third-party websites to measure web traffic and performance data and to target ads on social platforms. ºÚÁϳԹÏÍø News collects page usage data from news partners that opt to include our pixel tracker when they republish our articles. This data is not shared with third-party sites or social platforms and users' personally identifiable information is notÌýrecorded or tracked, per . The Markup does not use a pixel tracker. You can read its full privacy policy .

This article was co-published withÌý, a nonprofit newsroom that investigates how powerful institutions are using technology to change our society. Sign up forÌý.

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It’s more than a feeling. Many companies in the health tech sector — which provides services that range from mental health counseling to shipping attention-deficit/hyperactivity disorder pills through the mail — have shockingly leaky privacy practices.

A by the found that 26 of 32 mental health apps had lax safeguards. Analysts from the foundation documented numerous weaknesses in their privacy practices.

Jen Caltrider, the leader of Mozilla’s project, said the privacy policies of apps she used to practice drumming were scarcely different from the policies of the mental health apps the foundation reviewed — despite the far greater sensitivity of what the latter records.

“I don’t care if someone knows I practice drums twice a week, but I do care if someone knows I visit the therapist twice a week,” she said. “This personal data is just another pot of gold to them, to their investors.”

The stakes have become increasingly urgent in the public mind. Apps used by women, such as period trackers and other types of fertility-management technology, are now a focus of concern with the potential overturning of Roe v. Wade. Fueled by social media, users are exhorting one another to delete data stored by those apps — a right not always granted to users of health apps — for fear that the information could be .

“I think these big data outfits are looking at a day of reckoning,” said U.S. Sen. Ron Wyden (D-Ore.). “They gotta decide — are they going to protect the privacy of women who do business with them? Or are they basically going to sell out to the highest bidder?”

Countering those fears is a movement to better control information use through legislation and regulation. While nurses, hospitals, and other health care providers abide by privacy protections put in place by the Health Insurance Portability and Accountability Act, or HIPAA, the burgeoning sector of health care apps has skimpier shields for users.

Although some privacy advocates hope the federal government might step in after years of work, time is running out for a congressional solution as the midterm elections in November approach.

Enter the private sector. This year, a group of nonprofits and corporations calling for a self-regulatory project to guard patients’ data when it’s outside the health care system, an approach that critics compare with the proverbial fox guarding the henhouse.

The project’s backers tell a different story. The initiative was developed over two years with two groups: the Center for Democracy and Technology and Executives for Health Innovation. Ultimately, such an effort would be administered by , a nonprofit once associated with the Better Business Bureau.

Participating companies might hold a range of data, from genomic to other information, and work with apps, wearables, or other products. Those companies would agree to audits, spot checks, and other compliance activities in exchange for a sort of certification or seal of approval. That activity, the drafters maintained, would help patch up the privacy leaks in the current system.

“It’s a real mixed bag — for ordinary folks, for health privacy,” acknowledged Andy Crawford, senior counsel for privacy and data at the Center for Democracy and Technology. “HIPAA has decent privacy protections,” he said. The rest of the ecosystem, however, has gaps.

Still, there is considerable doubt that the private sector proposal will create a viable regulatory system for health data. Many participants — including some of the initiative’s most powerful companies and constituents, such as Apple, Google, and 23andMe — dropped out during the gestation process. (A 23andMe spokesperson cited “bandwidth issues” and noted the company’s participation in the publication of . The other two companies didn’t respond to requests for comment.)

Other participants felt the project’s ambitions were slanted toward corporate interests. But that opinion wasn’t necessarily universal — one participant, Laura Hoffman, formerly of the American Medical Association, said the for-profit companies were frustrated by “constraints it would put on profitable business practices that exploit both individuals and communities.”

Broadly, self-regulatory plans work as a combination of carrot and stick. Membership in the self-regulatory framework “could be a marketing advantage, a competitive advantage,” said Mary Engle, executive vice president for BBB National Programs. Consumers might prefer to use apps or products that promise to protect patient privacy.

But if those corporations go astray — touting their privacy practices while not truly protecting users — they can get rapped by the Federal Trade Commission. The agency can go after companies that don’t live up to their promises under its authority to police unfair or deceptive trade practices.

But there are a few key problems, said Lucia Savage, a privacy expert with Omada Health, a startup offering digital care for prediabetes and other chronic conditions. Savage previously was chief privacy officer for the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology. “It is not required that one self-regulate,” she said. Companies might opt not to join. And consumers might not know to look for a certification of good practices.

“Companies aren’t going to self-regulate. They’re just not. It’s up to policymakers,” said Mozilla’s Caltrider. She cited her own experience — emailing the privacy contacts listed by companies in their policies, only to be met by silence, even after three or four emails. One company later claimed the person responsible for monitoring the email address had left and had yet to be replaced. “I think that’s telling,” she said.

Then there’s enforcement: The FTC covers businesses, not nonprofits, Savage said. And nonprofits can behave just as poorly as any rapacious robber baron. This year, a suicide hotline was embroiled in scandal after Politico reported that it had shared with an artificial intelligence company between users considering self-harm and an AI-driven chat service. FTC action can be ponderous, and Savage wonders whether consumers are truly better off afterward.

Difficulties can be seen within the proposed self-regulatory framework itself. Some key terms — like “health information” — aren’t fully defined.

It’s easy to say some data — like genomic data — is health data. It’s thornier for other types of information. Researchers are repurposing seemingly ordinary data — like the tone of one’s voice — as an indicator of one’s health. So setting the right definition is likely to be a tricky task for any regulator.

For now, discussions — whether in the private sector or in government — are just that. Some companies are signaling their optimism that Congress might enact comprehensive privacy legislation. “Americans want a national privacy law,” Kent Walker, chief legal officer for Google, said at a recent event held by the R Street Institute, a pro-free-market think tank. “We’ve got Congress very close to passing something.”

That could be just the tonic for critics of a self-regulatory approach — depending on the details. But several specifics, such as who should enforce the potential law’s provisions, remain unresolved.

The self-regulatory initiative is seeking startup funding, potentially from philanthropies, beyond whatever dues or fees would sustain it. Still, Engle of BBB National Programs said action is urgent: “No one knows when legislation will pass. We can’t wait for that. There’s so much of this data that’s being collected and not being protected.”

KHN reporter Victoria Knight contributed to this article.

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The answers were elusive.

Picture the scene on Oct. 5. White House physician Dr. Sean Conley, flanked by other members of Trump’s medical team, met with reporters outside the hospital. But Conley would not disclose the results of the president’s lung scans and other vital information, invoking a federal law he said allows him to selectively provide intel on the president’s health.

“There are HIPAA rules and regulations that restrict me in sharing certain things for his safety and his own health,” .

The law he’s referring to, , is the Health Insurance Portability and Accountability Act of 1996, which includes privacy protections designed to shield personal health information from disclosure without a patient’s consent.

Because this is likely to remain an issue, we decided to take a look. In what cases does HIPAA restrict the sharing of information — and is the president covered by it?

Experts agreed that he is, but several noted there are exceptions to its protections — stirring debate over the airwaves and on regarding about the president’s health should be released.

Explaining the Protections

HIPAA and the rules for its implementation apply to medical providers — such as doctors, dentists, pharmacists, hospitals — and most health plans that either provide or pay for medical care.

In some cases, the law permits the sharing of medical information without specific consent, such as when needed for treatment purposes or billing. Examples include doctors or hospitals sharing information with other physicians or facilities involved in the patient’s care, or information shared about tests, drugs or other medical care so bills can be sent to patients.

Other than that, without specific patient consent, the law is clear.

“The default rule under HIPAA is that health care providers may not disclose a patient’s health information. Period,” said , a consultant in Washington, D.C., and a former privacy official in the Obama administration.

The experts we consulted all agreed that Trump’s doctors are bound by HIPAA. Since he is their patient, they cannot share his medical information without his consent.

Patients can allow some information to be released while demanding that other bits be withheld.

That may be why the public has been given only select details about Trump’s COVID-19 status, such as when Conley discussed the president’s blood pressure reading but not the results of his lung scans.

Trump “can pick and choose what he wants to disclose,” Pritts said.

So it is up to Trump to give his doctors the green light to report to the public on his condition.

“HIPAA does not prevent the president of the United States from authorizing the disclosure of all publicly relevant information,” said , a professor of global health law at Georgetown University. “He can share it if he wanted to and he can tell his doctors to share it.”

, a teaching assistant professor of health policy and management at George Washington University, said that because Conley shared some medically private information with the American public, there must have been a conversation between the president and his doctors about what was OK to include in their press briefings.

“He would have had to have given his authorization,” said Gray. In other words, Trump OK’d the details his doctors mentioned, but when follow-up questions were asked, she said, HIPAA was “a shield” because “the president hadn’t authorized the release of anything else.”

Still, beyond HIPAA, other factors could lead to less-than-complete disclosure of the president’s health.

For starters, Trump is the commander in chief, and his personal physician is a member of the military.

“If your commander in chief says, ‘I’m giving you a command — forget about HIPAA,’” said , a resident fellow with the American Enterprise Institute.

Pritts and others also said the president’s physician may not be covered by HIPAA if his care is provided by the White House medical unit, which does not bill for its services or involve health insurance.

But, “whether covered by HIPAA or not, a physician has an ethical obligation to maintain patient confidentiality,” Pritts said.

And Leaks?

It’s also important to note that HIPAA applies only to health care professionals and related entities working within that sphere.

So, when Sean Spicer, former White House press secretary, that a journalist had violated HIPAA (he misspelled it as “HIPPA”) by reporting that a member of the White House press shop had COVID-19, he was wrong, said the experts.

“Journalists are not bound by HIPAA,” said Gostin.

Gray likened HIPAA in that way to a door.

“Behind that door is health care information. Hypothetically, only doctors have access to that information, and HIPAA prevents health care providers from unlocking that door,” she said. “But, once the info gets out of that door, then HIPAA no longer applies.”

And the information is likely to come out — sooner or later, said Miller. “Leaking will take care of most reporting and disclosure” about the president’s health, he said.

The Exceptions

Within HIPAA are a couple of exceptions identifying when health information can be disclosed without the authorization of the patient.

For example, the law does allow for disclosure if it

Might that apply here, given that Trump took a ride around Walter Reed in a government SUV with Secret Service agents, or returned to a White House filled with other employees?

, a professor of public interest law at George Washington University Law School, said he doesn’t think the public health exemption would apply in this case.

“If a patient is contagious and noncompliant, doctors can make disclosure in the interest of public health,” Turley wrote in an email. “However, the team of doctors stated that they felt that it was appropriate to send President Trump back to the White House to continue to recover.”

Moreover, Turley noted that nothing was withheld that would have qualified for this exception. “The world knows that the president is COVID-positive and still likely contagious,” he wrote. “It is unclear what further information would do in order to put the world on notice.”

Some experts, however, expressed a different view. They argued that the details of when the president last tested positive would provide insight into who may have been exposed and how long he should be considered infectious and asked to isolate. Even so, the law’s public health exemption is usually interpreted to mean such information would be shared only with state and local health officials.

There are two HIPAA exceptions that apply specifically to the president, said Gray.

“They could make that disclosure to people who need to know, to the Secret Service or the vice president, but it is essentially only to protect [the president],” said Gray. “There is also an armed forces exception, but disclosures are in regards to carrying out a military mission, which doesn’t apply here.”

What about national security?

Miller, at AEI, said concerns about national security could be among the reasons for more disclosure, such as questioning a president’s ability to carry out duties. But HIPAA wasn’t designed to address this point.

Some argue that because the president is not just an average citizen, he should waive his right to medical privacy.

“The president is not just an individual; the president is the chief executive,” said , an adjunct lecturer on American foreign policy at Johns Hopkins University. “The president loses a lot of privacy because our political system, our governmental system demands it. The president always has to be available to the military and that means the state of his health is a matter of national security.”

Historical precedent

Trump is one in a long line of presidents who have not been completely transparent in sharing their medical information.

“There’s a pretty strong tradition of these things being obscured,” said , an adjunct faculty member at the Tulane University School of Public Health and Tropical Medicine. And no federal law requires a president to provide this information.

One of the most notable examples is , said Barry.

Wilson likely caught the so-called Spanish influenza in 1919, which was kept secret. Later that year, he had a severe stroke that disabled him, the gravity of which was also hidden from the public.

President John F. Kennedy used painkillers and other medications while in office, which until years after his death.

And when President Ronald Reagan was shot in 1981, he was much closer to death than his to the public. There were also while in his final years in office. He was diagnosed with Alzheimer’s disease five years after his final term.

Why would White Houses want to obscure health information of presidents?

“Every White House wants the public to think the president is healthy, strong and capable of leading the country,” said Barry. “That’s consistent across parties and presidencies.”

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Jacqueline is watching the appointment on her computer screen after the sun has set, 8,000 miles away in Mysore, a southern Indian city known for its palaces and jasmine flowers. She copiously documents the details of each visit and enters them into the patient’s electronic health record, or EHR.

Jacqueline (her real first name, according to her employer), works for San Francisco-based , a startup with 1,000 medical scribes in South Asia and the U.S. The company is part of a growing industry that profits from a confluence of health care trends — including, now, the pandemic — that are dispersing patient care around the globe.

Medical scribes first appeared in the as note takers for emergency room physicians. But the practice took off after 2009, when the federal HITECH Act health care providers to adopt EHRs. These were supposed to simplify patient record-keeping, but instead they generated a need for scribes. Doctors find entering notes and data into poorly designed EHR software cumbersome and time-consuming. So scribing is a fast-growing field in the U.S., with the workforce expanding from 15,000 in 2015 to an estimated 100,000 this year.

A 2016 found that doctors spent 37% of a patient visit on a computer and an average of two extra hours after work on EHR tasks. EHR use contributes to physician burnout, increasingly considered a in itself.

Before COVID-19, most scribes — typically young, aspiring health professionals — worked in the exam room a few paces away from the doctor and patient. This year, as the pandemic led patients to shun clinics and hospitals, many scribes were laid off or furloughed. Many have returned, but scribes are increasingly working online — even from the other side of the world.

Remote scribes are patched into the exam room’s sound via a tablet or speaker, or through a video connection. Some create doctors’ notes in real time; others annotate after visits. And some have help from speech-recognition software programs that grow more accurate with use.

While many remote scribes are based in the United States, others are abroad, primarily in India. Chanchal Toor was a dental school graduate facing limited job opportunities in India when a subcontractor to Augmedix hired her in 2015. Some of her scribe colleagues also trained or aspired to become dentists or other health professionals, she said. Now a manager for Augmedix in San Francisco, Toor said scribing, even remotely, made her feel like part of a health care team.

Augmedix recruits people who have a bachelor’s degree or the equivalent, and screens for proficiency in English reading, listening comprehension and writing, the company said. Once on board, scribes undergo about three months of training. The curriculum includes medical terminology, anatomy, physiology and mock visits.

Revenue has grown this year, and his sales team has grown from four to 14 members, Augmedix CEO Manny Krakaris said. , which employs Indian doctors as remote scribes for their U.S. counterparts, projects 50% revenue growth this year for its scribing business. He said the company employs 4,000 people but declined to share how many are scribes.

Remote scribe “Edwin” gives internist Dr. Susan Fesmire more time, freeing her from having to finish 20 charts at the end of every day. “It was like constantly having homework that you don’t finish,” she said. With the help of “Edwin” — Fesmire said he declines to use his real name — she had the time and energy to become chief operating officer of her small Dallas practice. Edwin works for Physicians Angels, which employs 500 remote scribes in India. Fesmire pays $14 an hour for his services.

Doctors with foreign scribes say notes may need minor editing for dialectal differences and scribes may be unfamiliar with local vocabulary. “I had a patient from Louisiana,” said Fesmire, “and Edwin said afterward, ‘What is chicory, doctor?’” But she also praised his notes as more accurate and complete than her own.

Kevin Brady, president of Physicians Angels, said their scribes start at $500 to $600 per month, plus health care and retirement benefits, while senior scribes make $1,000 to $1,500 — Employers are to provide employees with health insurance, although many scribes are contractors, and the job site Indeed.com says the average salary for a scribe in India is . Scribes in the U.S. get .

Remote scribing is still a small part of the market. Craig Newman, chief strategy officer of , parent to ScribeAmerica, the largest scribing company in the U.S., said that the firm’s remote scribing business has increased threefold since the pandemic’s outset but that “a large majority” of the company’s 26,000 U.S. scribes still work in person.

It’s a highly unregulated industry for which training and certification aren’t required. The service typically costs physicians , and studies show scribe use is linked to , and — which can mean more revenue.

For patients, studies suggest scribes have a or effect on satisfaction. Some have privacy concerns, though, and state laws vary on whether a patient must be notified that someone is watching and listening many miles away.

Only 1% of patients refuse a remote scribe when asked by physicians at Massachusetts General Physicians Organization, said Dr. David Ting, the practice’s chief medical information officer. His group, an IKS Health client, always seeks patient consent, Ting said.

Scribes aren’t for everyone, though. Janis Ulevich, a retiree in Palo Alto, California, declines her primary care doctor’s remote scribe. “Conversations with your doctor can be intimate,” said Ulevich. “I don’t like other people listening in.”

Some patients may not have the opportunity to decline. With limited exceptions, federal laws like HIPAA, the Health Insurance Portability and Accountability Act of 1996, don’t require doctors to seek a patient’s consent before sharing their health information with a company that supports the practice’s work (like a scribe firm), as long as that company signed a contract agreeing to protect the patient’s data, said Chris Apgar, a former HIPAA compliance officer.

About require all parties in a conversation to agree to be recorded, meaning they require a patient’s permission. Some states also have special privacy protections for certain groups, like people with HIV/AIDS, or very strict informed-consent or privacy laws, said Matt Fisher, a partner at Massachusetts law firm Mirick O’Connell.

Remote scribing also raises cybersecurity concerns. Reported data breaches are rare, but some scribe companies have lax security, said , CEO of the health care cybersecurity firm Corl Technologies.

The next step in the trend could be no human scribes at all. Tech giants like , and are developing or already marketing artificial intelligence tools aimed at reducing or eliminating the need for humans to document visits.

AI and scribes won’t eliminate physician burnout that stems from the nature of the health care system, said Dr. Rebekah Gardner, an associate professor of medicine at Brown University who researches the issue. Neither can take on like submitting requests for insurance company approval of procedures, drugs and tests, she said.

This story was produced byÌý, which publishesÌý, an editorially independent service of theÌý.

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With the pandemic far from over, public health needs are paramount. Public health experts say that collecting personal data may be the only way to analyze information on the massive scale needed. But how that information is used and by whom worries some privacy advocates.

A number of academics, data firms and technology companies are using mobile devices to gather data. Some use the phones’ Bluetooth signals to aid in contact tracing by registering other nearby devices. Location information recorded on smartphones can help them map whether people are staying home and where they do venture out. Others have built symptom-tracker apps designed to predict where the virus might turn up next.

And more may be coming. Just look to other countries, including , and , which are using big data or apps to aid in their pandemic responses. As the United States contemplates its move to open back up for business, organizations such as the left-leaning Center for American Progress and the conservative American Enterprise Institute have , including much more testing and digital surveillance.

A from Johns Hopkins Bloomberg School of Public Health noted that such tech-heavy efforts might not fly in the U.S. because of privacy concerns. Privacy advocates have long argued for increased protection of personal health information on fears that marketers, data bundlers or even hackers could sell or divulge the information, possibly affecting people’s jobs and credit or leading to identity theft. This tracking and tracing of data could include comings and goings normally closely guarded — from doctors’ or therapists’ visits, pot dispensaries and any number of activities one might want to keep secret.

But, in the current situation, some say privacy concerns must take a back seat.

“In a plague, civil liberties have to be suspended. There are good reasons for that,” said Arthur Caplan, a professor of medical ethics at NYU Langone Medical Center. He noted that because of the enormous amount of data already collected about Americans by marketers, the “genie is already three-quarters of the way out of the bottle.”

So the benefit of increased surveillance and contact tracing will be a loosening of stay-at-home restrictions, he said. “If it gets us back to work and school, we don’t care. We can fix it later.”

However, the pandemic may be pushing the United States to a point of no return.

Jake Laperruque, senior counsel and a privacy expert at the Project on Government Oversight, likens the current circumstances to the period after the terrorist attacks of Sept. 11, 2001, when former President George W. Bush signed into law the Patriot Act. The measure allowed the government to more easily surveil Americans’ phone and computer records in the name of national security.

“A lot of times during various types of emergencies, we see things happening that we’re doing just because it’s an emergency. It’s really hard to claw back from those and turn them off,” said Laperruque.

Contact Tracing Via BluetoothÌý

A longtime public health strategy, “contact tracing,” involves identifying individuals who have contracted an infectious disease, notifying others who have been in contact with them and ensuring that those with the disease manage it safely. South Korea and Singapore have reported some success in managing the outbreak in part because of aggressive contact tracing.

Typically, public health workers handle the tracing. But the sheer size of this pandemic calls for more automation, said supporters of a data-driven approach.

On April 10, announced they were teaming up to develop smartphone software that would allow phones to sense via Bluetooth whether a phone user had been near someone who has the coronavirus, similar to the app used in Singapore. For it to work, phone users must download an app provided by public health officials and be willing to share their health information, including whether they’ve tested positive for the coronavirus.

The companies that they won’t collect user location data or personally identifiable information and that those who test positive would not be made known to Google or Apple.

Ideally, the information could be useful to public health departments, said Dr. Georges Benjamin, executive director of the American Public Health Association.

While he has no problem with public health officials getting data ― after all, laws already require reporting of infectious diseases to try to thwart outbreaks — he cited potential privacy problems if it’s a commercial venture doing the gathering.

In an interview on Snapchat’s “,” Dr. Anthony Fauci, a member of the White House coronavirus task force and director of the National Institute of Allergy and Infectious Diseases, had a similar take, saying that from a public health standpoint, “it makes absolute sense.” He also noted that pushback on privacy issues and civil liberties “would be considerable.” In his view, government rather than private-sector involvement might amplify these concerns.

Ultimately, though, public health officials ― including — are clear that finding a doable means to advance contact tracing is critical to getting the country back to normal.

Caplan agrees.

“That’s the biggest reason to want to yield on privacy,” said Caplan. “If we don’t get a vaccine or a cure miraculously soon, the only way we’re getting out of isolation and quarantine is to track who is positive and who isn’t and who they are around.”

But questions remain ― while the apps may indicate whether a person has come within a few feet of someone with the virus, the smartphone can’t differentiate between close, person-to-person interaction or a signal detected from the other side of an apartment wall, possibly resulting in people being asked to self-isolate who don’t need to. Issues could also arise if those who have been exposed cannot access coronavirus tests, or if the self-quarantines of those who receive alerts about their exposure are not enforced. There is also the possibility that users’ phones or the database holding the coronavirus test results could be hacked.

Location Tracking

Smartphone users are constantly sharing their location information, often unknowingly, through apps. That data can be shared with advertisers, data collection companies and other third-party groups.

And it is now being harnessed to understand how well Americans are complying with “stay-at-home” orders.

In early April, he looked at a movement map from a data collection company called to help make his decision to issue a “stay-at-home” order since he saw movements around the state remained at “pre-COVID-19” levels.

Google has also started sharing public county and state which show how people’s movements among grocery stores, parks, workplaces and residential homes have increased or reduced, compared with their normal baseline movements. Apple just a similar initiative.

These companies say they protect user privacy by keeping information aggregated and anonymous.

Laperruque said as long as data stays aggregated, or combined and sorted into groups, he thinks it can provide valuable information, but it must be summarized to ensure the information remains anonymous. If reports started including certain features, such as addresses or neighborhoods, it could make identities “pretty easy” to figure out, he said.

Indeed, and a have shown that it can be relatively simple to identify individuals from anonymized data.

Symptom Tracking

Another type of data sharing aims to crowdsource COVID-19 symptoms and pinpoint ongoing and emerging hot-spots.

The , for example, is a mobile app created by researchers at Harvard with data firm and Kings College London.

After downloading the app, users give their ZIP code, age, gender at birth, height, weight and general questions about health, then check in every day. If they feel fine, it’s a 10-second effort. If they’re feeling unwell, they note what symptoms they are experiencing. Rolled out initially in parts of the United Kingdom, where it now has more than 2 million users, the COVID Symptom Tracker launched in the U.S. the first week of April.

One of the app’s creators, Andrew Chan, a professor of immunology and infectious diseases at the Harvard T.H. Chan School of Public Health, said they have no intention of ever commercializing the data, and it is aggregated and anonymized.

The group plans to share information with other researchers, some of whom aim to launch similar trackers. New York City also created its own tracker, that asks users to self-report symptoms, COVID-19 diagnoses and quarantine statuses.

Questions remain, however, about how useful such data will be. It depends on how many people sign up and how accurate they are in reporting.

Even if something is opt-in, privacy advocate David Carroll, an associate professor at the New School in New York, recommended that anyone who wants to use it first read the privacy policy carefully. Those that follow European or California privacy rules are providing the most protection.

“It’s still the wild West.” he said. “You have to do your work and read your policies and try to make sense of them. I read the policy of the NYC tracker. It was pretty clear, but I didn’t see enough information about how long the data will be held.”

Weighing The Trade-OffsÌý

To be sure, there could be benefits of sharing data via our mobile phones.

Public health officials may be better equipped to track who has the coronavirus and warn those who have been in contact so they can self-isolate. State and local governments can understand whether stay-at-home orders are working. And researchers may be able to pinpoint emerging hot spots.

But, privacy experts say these measures should be taken only if responsible consumer protection policies are put in place: obtaining clear consent from users, ensuring public presentation of data remains anonymous and implementing limits on what data is gathered and how long it is held.

Many also note that after this crisis ends, it will be a struggle to recover the protections set aside.

“We will have overcompensated, and we should plan for that,” Carroll said.

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