Delete my data, or else

The ideas and innovators shaping health care

Oct 11, 2023 View in browser   By Carmen Paun, Erin Schumaker, Daniel Payne and Evan Peng TECH MAZE Data brokers will face stiff penalties in California if they don't delete personal information on demand. | Justin Sullivan/Getty Images California is imposing the strictest privacy regulation in the country on data brokers that collect and sell information on individuals, POLITICO’s Alfred Ng reports. The Golden State’s Democratic governor, Gavin Newsom, signed the Delete Act on Tuesday requiring data brokers to erase everything they have on a person when the person asks them to. The new rules will have implications for the health care industry. How so? Hospitals and health care providers pay data brokers to help them resolve patient identity issues and to perform “database hygiene,” in which they update records with changes to address and contact information. If the brokers’ records have bigger gaps because of the law, it would impede those efforts. On the other hand, reproductive care provider Planned Parenthood backed the measure, arguing that it would allow people to shield information about their abortions that could be used against them in states that have banned or restricted the procedure. A patchwork: While 12 states have data privacy laws, all of which give residents the right to request that their data be deleted, California’s law is the toughest in the nation. Data brokers must delete all information they have about a person, not just information they collected from that person. The Consumer Data Industry Association, a trade group representing data brokers, has raised concern that other states could copy California's rules.   GO INSIDE THE CAPITOL DOME: From the outset, POLITICO has been your eyes and ears on Capitol Hill, providing the most thorough Congress coverage — from political characters and emerging leaders to leadership squabbles and policy nuggets during committee markups and hearings. We're stepping up our game to ensure you’re fully informed on every key detail inside the Capitol Dome, all day, every day. Start your day with Playbook AM, refuel at midday with our Playbook PM halftime report and enrich your evening discussions with Huddle. Plus, stay updated with real-time buzz all day through our brand new Inside Congress Live feature. Learn more and subscribe here.     WELCOME TO FUTURE PULSE Woodbine, Md. | Shawn Zeller This is where we explore the ideas and innovators shaping health care. Look up: Stargazers between Oregon and Brazil are in for a treat Saturday when the moon will pass directly between Earth and the sun, creating a "ring of fire" eclipse. You can check to see if you're in the eclipse pathway on NASA's website. Share any thoughts, news, tips and feedback with Carmen Paun at cpaun@politico.com, Daniel Payne at dpayne@politico.com, Evan Peng at epeng@politico.com or Erin Schumaker at eschumaker@politico.com. Send tips securely through SecureDrop, Signal, Telegram or WhatsApp. Today on our Pulse Check podcast, host Kelly Hooper talks with Kaja Klapsa, a former POLITICO fellow and a reporter for the German newspaper Die WELT about gender-affirming care protocols in Europe that many Republicans point to when advocating for banning such care for minors in the U.S. — and explains how the view on the other side of the Atlantic is more nuanced than portrayed. Listen to today’s Pulse Check podcast WORLD VIEW Lacking its own vaccine manufacturers, African countries have had to rely on others. | AP African countries, stuck at the back of the line when Covid-19 vaccines rolled out in 2020, are working with American and European support to set up their own manufacturing sites so it doesn’t happen again. But Adar Poonawalla, the CEO of the Serum Institute of India — the largest vaccine producer in the world by volume — told Carmen he thinks the money could be better spent. “I don’t see that sort of situation coming up again,” Poonawalla said about the delay African countries experienced in getting vaccines during the pandemic because of inequitable distribution and export bans. Poonawalla said Africa-based vaccine manufacturers would struggle to compete in scale and price with established manufacturers, such as his, which can produce billions of doses quickly and cheaply. “Who is going to pay for expensive vaccines made in Africa?” Poonawalla wondered. Even so: Since African drugmakers could become Serum competitors, Poonawalla does have an agenda. But he’s not the only one raising questions. Gavi, the Vaccine Alliance, which procures shots for the poorest countries with funds from the U.S. and other donors, warned last year that it and the countries it supports would have to pay a premium for African-made vaccines. “In the long-term, to be sustainable and globally competitive, it will be essential for these new suppliers to produce vaccines that are attractive, both in terms of pricing and quality,” Gavi said in a June 2022 white paper on a new era of vaccine manufacturing in Africa.   DOWNLOAD THE POLITICO APP: Stay in the know with the POLITICO mobile app, featuring timely political news, insights and analysis from the best journalists in the business. The sleek and navigable design offers a convenient way to access POLITICO's scoops and groundbreaking reporting. Don’t miss out on the app you can rely on for the news you need. DOWNLOAD FOR iOS – DOWNLOAD FOR ANDROID.     Diagnosis Evidence of loneliness' ills are mounting. | AFP via Getty Images People who frequently feel lonely might be at a higher risk for Parkinson’s disease, new research suggests. The Parkinson’s connection is part of a growing body of evidence linking loneliness to serious health problems like cardiovascular disease, dementia, stroke, depression, anxiety and suicide. By the numbers: Loneliness is pervasive in the U.S., with 1 in 3 people 45 years old and older feeling lonely, according to the Centers for Disease Control and Prevention. What’s new? In a study published this month in JAMA Neurology, researchers analyzed data from 491,603 adults between ages 38 and 73, using National Health Service data from the U.K. People who responded “yes” to the question “Do you often feel lonely?” were more likely to develop Parkinson’s disease over 15 years. Even after accounting for factors like physical activity, depression, genetic risk and social isolation, the link between feeling lonely and developing Parkinson’s disease remained. Previous research has found an association between loneliness and other brain conditions, like Alzheimer’s disease and dementia, which could indicate that loneliness has an effect on brain health. The good news: There’s a growing movement toward treating loneliness as a public health issue, with government figures like Surgeon General Vivek Murthy and Sen. Chris Murphy (D-Conn.) developing plans to help Americans strengthen their social connections.   Follow us on Twitter Carmen Paun @carmenpaun Daniel Payne @_daniel_payne Ruth Reader @RuthReader Erin Schumaker @erinlschumaker Evan Peng @thepngfile   Follow us

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