Data privacy after the fall of Roe

The ideas and innovators shaping health care

Jan 31, 2023 View in browser   By Ben Leonard, Erin Schumaker, Carmen Paun and Ruth Reader WASHINGTON WATCH Jacobs has Democrats thinking about the data privacy consequences of Roe's fall. | Getty Images for Caring Across Generations Rep. Sara Jacobs (D-Calif.) has emerged as one of the Democratic party’s leaders fighting to protect health data that could be used in potential abortion prosecutions. The second-term lawmaker, whose district contains parts of San Diego, recently introduced legislation alongside fellow California Democratic Rep. Anna Eshoo aiming to tighten HIPAA protections for reproductive health information. The bill would prevent health care providers from divulging information tied to pregnancy termination or loss without consent. While unlikely to pass the Republican-controlled House, the legislation is a marker of where the party stands on the issue post-Roe v. Wade. Ben caught up with Jacobs to discuss her legislation, the work she’s doing with HHS to strengthen data protections and what it’s like to be a millennial in Congress. This interview has been edited for length and clarity. What’s the thinking behind the new legislation? In this post-Roe moment, none of our privacy laws are really set up for what we are going through and what society looks like. We need a host of new fixes to make sure that we are not creating a chilling effect for patients who are seeking abortion care and making sure we’re protecting people in states that are criminalizing abortion. It's incumbent on us in the federal government to do everything we can to protect this really sensitive and personal data. Should the Biden administration be doing more to protect this data?  We’re actually working with HHS right now on what more they can be doing on their own in order to strengthen HIPAA for abortion access. We’re also working with them to understand what they need from Congress, which is why we introduced the bill, because we know that there are some things HHS can’t do without Congress. HHS has already released guidance, and we’re working with them to turn it into official rulemaking. But in the law enforcement space, they need congressional action, which is why our bill focuses on the piece of HIPAA that allows providers to respond to law enforcement requests, like subpoenas and warrants. Is there any common ground you can find with Republicans?  Obviously, the Republican majority is very against abortion rights. But there are a number of privacy-minded Republicans, and we are working with them right now to see what could be possible to get done in the next few years. What should states be doing to safeguard data?  This is an issue that the federal government needs to solve. I don’t think it should be on individual people or individual states to do this, especially because we know that data does not care about state lines. But I have been very happy to see states like California and Washington state put in place protections. How should Democrats be messaging on abortion?  I am one of the people that was incredibly frustrated by everyone before the November elections talking about how Democrats were talking about abortion too much. I’m a 33-year-old woman. Pretty much the only thing I talk about is who’s having a baby, who’s not having a baby, who wants to have a baby and who doesn’t want to. For many, many Americans, whether or not they have access to reproductive health care, is the kitchen table issue. The more that we highlight the very real impact this has on people, the better. Millennials are a growing group in Congress. What do you have in common?  We have a really important, different perspective. For instance, we are a generation that, for the most part, grew up online, so we understand data privacy in a way that other generations don’t. In working on my “My Body, My Data” bill, I had to explain to many of my colleagues that women track their periods and that there are apps that help people track their periods. We’re going to see more bills that reflect what life is like for millennials.   JOIN POLITICO ON 2/9 TO HEAR FROM AMERICA’S GOVERNORS: In a divided Congress, more legislative and policy enforcement will shift to the states, meaning governors will take a leading role in setting the agenda for the nation. Join POLITICO on Thursday, Feb. 9 at World Wide Technology's D.C. Innovation Center for The Fifty: America's Governors, where we will examine where innovations are taking shape and new regulatory red lines, the future of reproductive health, and how climate change is being addressed across a series of one-on-one interviews. REGISTER HERE.     WELCOME TO FUTURE PULSE Banff, Canada | Shawn Zeller This is where we explore the ideas and innovators shaping health care. The pandemic "baby bump" — meaning the slight uptick in babies born to U.S. women in 2021 compared to 2020 — reversed a roughly decade-long trend of declining registered birth rates in the U.S., according to a CDC report released Tuesday. The report also highlighted a concerning trend. Preterm birth, which puts babies at risk for health problems and complications, hit the highest level ever in 2021, accounting for 10.5 percent of all births. Looking to the future: Fertility in the U.S. is still below "replacement," or the level at which generations can replace themselves. Since 1971, the U.S. has generally been below the replacement birth level. Share any other thoughts, news, tips and feedback with Ben Leonard at bleonard@politico.com, Ruth Reader at rreader@politico.com, Carmen Paun at cpaun@politico.com or Erin Schumaker at eschumaker@politico.com. Send tips securely through SecureDrop, Signal, Telegram or WhatsApp. Today on our Pulse Check podcast, Katherine Ellen Foley talks with Megan Wilson about the rumors spooking health care lobbyists about incoming Senate Health, Education, Labor and Pensions Committee Chair Bernie Sanders (I-Vt.). Listen to today’s Pulse Check podcast THE NEXT CURES Lawmakers want President Biden to do more to incentivize breakthroughs in organ research. | AP The Biden administration should boost efforts to develop the first artificial kidney, Republicans and Democrats in both the House and Senate agree. Reps. Suzan DelBene (D-Wash.) and Larry Bucshon (R-Ind.) and Sens. Ben Cardin (D-Md.) and Todd Young (R-Ind.) wrote to the White House Office of Management and Budget on Monday calling for the administration to include $25 million in its fiscal 2024 budget for an innovation competition to develop an artificial kidney. The competition, called KidneyX, is a collaboration between HHS and the American Society of Nephrology that has gotten $20 million from Congress since the 2020 fiscal year and $25 million from the organization. “This boost in investment would build upon the success of prior KidneyX prize competitions and turbocharge the development of the world’s first artificial kidney,” the lawmakers wrote. “This innovation would revolutionize day-to-day life for people with kidney failure, most of whom rely on dialysis, a therapy that accounts for 7 percent of the Medicare budget despite treating 1 percent of the Medicare population.” Why it matters: About 15 percent of U.S. adults have chronic kidney disease — 37 million people, according to the CDC. Patients whose disease progresses to kidney failure must receive a transplant or undergo dialysis. If researchers can develop an artificial kidney, it could revolutionize care for kidney failure. Some researchers and firms are using 3D printing in a bid to do so, though those efforts are still in their infancy.   LISTEN TO POLITICO'S ENERGY PODCAST: Check out our daily five-minute brief on the latest energy and environmental politics and policy news. Don't miss out on the must-know stories, candid insights, and analysis from POLITICO's energy team. Listen today.     CHECKUP Some YouTube influencers are touting natural family planning to replace more effective birth control methods. | Danny Moloshok/AP Photo YouTube influencers are dishing out risky advice: Ditch the birth control pill for “natural” birth control methods like menstrual cycle–tracking apps. Taking that advice could lead to unplanned pregnancies, the journal Health Communications said, in a press release about a small new peer-reviewed study it published this month about the influencers’ videos. And that, in turn, has led to some eye-popping headlines about misinformation’s consequences. Hold on: But it seems the online influencers’ reach is limited: Evidence that many people take their birth control advice is lacking. Big picture: The pill remains the second most popular form of birth control in the U.S., after permanent female sterilization, according to nationally representative data from the Guttmacher Institute, a sexual and reproductive health research and policy organization. According to the most recently available nationally representative data: — In 2018, 16.4 percent of sexually active 15- to 49-year-old women who weren’t trying to get pregnant said they took the pill compared with 2.6 percent of women who reported using natural family-planning methods. — While the pill’s popularity has declined in recent years — reported use among 15- to 44-year-olds fell from 25.3 percent to 21.9 percent between 2014 and 2016 — that didn’t correspond with an uptick in natural family planning, which remained fairly flat at roughly 2 percent. — Highly effective long-acting reversible contraception methods, like IUDs and birth control implants, are becoming more popular with reported uptake rising from 14.3 to 17.8 percent during the 2014–2016 survey period, according to Guttmacher. — The data is even more telling for teenagers. Of 15- to 19-year-olds who used contraception, use of long-acting methods like the IUD and implants more than doubled between 2014 and 2016, from 9.8 percent to 22.2 percent. Grain of salt: The Health Communication study was small, analyzing 50 videos made by YouTube influencers with between 20,000 and 2.2 million followers, who talked about their experience with contraception between December 2019 and December 2021. — 74 percent of the influencers said they’d discontinued or planned to discontinue hormonal birth control. — Roughly 40 percent said they were using or had used nonhormonal birth control, such as cycle-tracking apps. — Pregnancy prevention, fewer side effects, low cost and “being more natural” were popular reasons YouTube influencers gave for liking nonhormonal methods.   Follow us on Twitter Ben Leonard @_BenLeonard_ Ruth Reader @RuthReader Carmen Paun @carmenpaun Erin Schumaker @erinlschumaker   Follow us

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