The FTC’s health data mission

May 02, 2023

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By Krista Mahr and Daniel Payne

Presented by

With help from Carmen Paun and Megan R. Wilson

Driving the day

The Federal Trade Commission building is pictured.

The FTC has focused on protecting health data not currently guarded by HIPAA. | John Shinkle/POLITICO

THE FTC’S NEW M.O. — The Federal Trade Commission has made protecting online health data a priority of its enforcement agenda in the absence of new federal data privacy legislation, POLITICO’s Ruth Reader reports.

How we got here: The FTC has focused on protecting health data not currently guarded by the 1996 Health Insurance Portability and Accountability Act, or HIPAA, which requires providers, insurers and other medical industry firms to safeguard patient data.

It largely uses its principal power — to police “unfair and deceptive” practices — to crack down on companies that misrepresent their data privacy policies or collect and share data in ways the agency deems unfair.

What it’s done so far: Earlier this year, the FTC cited a cybersecurity regulation — its health breach notification rule — to justify a fine and settlement with GoodRx, a telehealth provider and drug discounter, for allegedly sharing customer data with business partners.

The FTC has also warned firms that it will police what’s known as dark patterns — web-advertising design choices aimed at influencing users to accept terms or buy products. A September FTC report says, “These traps will not be tolerated.”

What’s next: The FTC plans to propose a rule that would more directly regulate online commercial surveillance and data security. The agency has received 1,250 comments on the advanced notice it released last year.

In the meantime, the agency has said it will continue policing companies that deal in unfair and deceptive data practices — but it needs more money. The FTC recently requested funding in a hearing before the House Energy and Commerce Subcommittee on Innovation, Data and Commerce.

WELCOME TO TUESDAY PULSE — Over the last two decades, more and more people have been showing up in the ER due to dog walks gone wrong. As a denizen of canine-crazed Capitol Hill, this feels unfortunate and ... unsurprising. Send your news and tips to kmahr@politico.com and dpayne@politico.com.

TODAY ON OUR PULSE CHECK PODCAST, host Ben Leonard talks with Megan R. Wilson, who is tracking health care legislation on the Hill, including efforts to lower health care costs and increased access to cheaper generic drugs. Megan breaks down the proposals in the House and Senate that have bipartisan support.

Listen to today’s Pulse Check podcast

A message from PhRMA:

Middlemen like PBMs are charging fees tied to the price of medicines, which means they make more money when the price of a medicine goes up. This business model allows PBM profits to soar and can lead to higher costs for patients. It’s time to break the link between PBM fees and medicine prices.

Coronavirus

A healthcare worker receives a Pfizer COVID-19 booster shot.

The Biden administration will end Covid-19 vaccine requirements for federal employees on May 11. | Lynne Sladky/AP Photo

FAREWELL, FEDERAL WORKER VACCINE MANDATE — The Biden administration said Monday it will end Covid-19 vaccine requirements for federal employees, federal contractors, international travelers and people working at facilities certified by the Centers for Medicare and Medicaid Services, Daniel reports.

The federal worker requirement, blocked by a preliminary injunction in January 2022 and upheld by an appeals court in March, was put in place in September 2021 and will end May 11 — the day the public health emergency for Covid expires.

Nevertheless, the White House said in its announcement that the requirement bolstered vaccinations, protected vulnerable people and reduced the pandemic’s impact on the economy.

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Lobby Watch

FIRST IN PULSE: A NEW PBM LOBBYIST GIRDS FOR BATTLE — The organization that represents pharmacy benefit managers — the pharmaceutical middlemen that negotiate drug discounts with drugmakers and design prescription drug benefits for health plans — has hired a new lobbyist as it comes under attack in Washington.

Lucia Lebens, who previously managed bipartisan political engagement strategy on the state and federal levels for student loan servicer Navient, will lead the Pharmaceutical Care Management Association’s federal lobbying team as senior vice president of federal affairs and political strategy.

The group needs all the advocacy firepower it can get as it pushes back on a slew of legislative proposals on Capitol Hill that take aim at the industry. Today, the Senate HELP Committee will consider four drug pricing bills, including one with proposals such as banning so-called spread pricing, in which PBMs charge health plans more for a drug than they reimburse pharmacies for dispensing it.

The industry has maintained that PBMs provide a net benefit to plans and employers and works to lower the cost of medicine, pinning the blame on drugmakers for high prices.

The bill “would mandate a one-size-fits-all contracting arrangement between pharmacy benefit companies and clients, which would be a dramatic shift from the flexibility and range of choices employers seek in their contract negotiations with PBMs,” said a PCMA spokesperson. “Patients would directly feel the negative impact when it comes to their prescription drug benefits” should the legislation become law.

In Congress

HOUSE GOP DOUBLES DOWN ON RISKY VIRUS RESEARCH — Three top House Republicans on Monday fired off two letters about virus research that might pose biosafety or biosecurity risks, Carmen reports.

Cathy McMorris Rodgers (R-Wash.), chair of the Energy and Commerce Committee; Brett Guthrie (R-Ky.), chair of the health subcommittee; and Morgan Griffith (R-Va.), chair of the subcommittee on oversight and investigations, asked the Government Accountability Office to assess the benefits and risks of conducting predictive field research programs for viruses.

In a separate letter Monday, they asked acting NIH director Lawrence Tabak to provide a list of all internal and external NIH research projects involving virus manipulation, as well as the biosafety level of the facility where the research is conducted.

The inquiries are part of the House’s ongoing Covid-19 origins investigation, which many House Republicans believe was sparked by an accidental leak at the Wuhan virology lab.

In a hearing on biosafety and risky research in the Oversight and Investigations Subcommittee last Thursday, experts argued that the U.S. needs tighter rules on such research and even a dedicated institution overseeing those rules.

A message from PhRMA:

IN THE STATES

MURPHY’S MENTAL HEALTH PLAN — Superintendents and mental health professionals are worried that Democratic Gov. Phil Murphy will take mental health services out of schools as part of his administration’s plan to reshape the state’s student support network, POLITICO’s Caroline Petrow-Cohen reports.

Under the current School Based Youth Services Program, mental health counseling and prevention programs are placed directly in schools for students to access. Murphy’s new model would serve more students but place resources in regional hubs throughout the state as part of what his administration calls a hub-and-spoke system.

Key context: The shift in services comes as the country deals with a youth mental health crisis. Earlier this year, a 14-year-old Ocean County girl killed herself days after she was bullied and a video of the incident circulated online.

Last year, a 17-year-old student at the private Lawrenceville School died by suicide after he was bullied. On Sunday, the anniversary of Jack Reid’s death, the school posted a statement about its shortcomings in dealing with the bullying and outlined steps it will take, such as hiring a bullying specialist and training faculty and staff to raise mental health awareness.

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What We're Reading

Nearly 400,000 Virginians — including 140,000 children — risk losing Medicaid as the state begins unwinding pandemic-era protections, The Washington Post reports.

Biohackers are looking to a kidney transplant drug to stop the clock on aging, The Wall Street Journal reports.

Stat writes that biotech firms are looking beyond Wegovy for the next big thing in the weight-loss drug market.

A message from PhRMA:

PBMs control your health care. Pharmacy benefit managers (PBMs) decide if medicines get covered and what you pay, regardless of what your doctor prescribes. They say they want lower prices, yet they often deny or limit coverage of lower-cost generics and biosimilars, instead covering medicines with higher prices so they make more money. This business model allows PBM profits to soar and can lead to higher costs for everyone. What else are they hiding?