At the summit, Steve Papermaster, the CEO and founder of Nano Vision, discussed the importance of "data-driven cures" in the future of health care with Steve Clemons, editor-at-large of The Hill. The increasing role of innovation in health care is also raising questions about the security of new technologies and data, issues which The Hill's Maggie Miller examined. Pressure builds to secure health data Momentum is growing on Capitol Hill to provide more protections for personal medical information as lawmakers work on drafting the first national data privacy law. Recent health data breaches have put a spotlight on the issue, which is likely to grow in importance as medical professionals shift more of their work online and increasingly turn to data and analytics to treat patients. Key congressional committees including the Senate Commerce Committee and the House Energy and Commerce Committee have been working to put together data privacy legislation since the start of the new Congress, with health data privacy likely to be in the spotlight. A spokesperson for House Energy and Commerce Committee Chairman Frank Pallone Jr. (D-N.J.) told The Hill that the committee "plans on including meaningful protections and consumer control for health data not covered" by the Health Insurance Portability and Accountability Act (HIPAA) in upcoming "comprehensive privacy legislation." HIPAA, signed into law in 1996, required the secretary of the Department of Health and Human Services (HHS) to create regulations to protect the privacy and security of health information. According to HHS, prior to HIPAA there was no general set of national security standards to protect health information. Updating the nation's laws to account for developments in new health care technologies and practices will be critical, experts say. Steve Grobman, the senior vice president and chief technology officer at cybersecurity group McAfee, said the risks around securing health data are likely to grow with the digitization of the medical industry. "When medical records were handwritten notes in a filing drawer in a doctor's office, it would be difficult for an adversary to get access to medical data at scale, the amount of medical data that they would actually be able to take would be limited," Grobman said. "With the digitization of data, it enables massive amounts of data to be stolen." Lawmakers, though, have already taken some steps to address the issue, including bills to force companies to better secure health data on apps. More on the cybersecurity challenges for health care here. New medical breakthroughs and innovations will also impact one of the biggest debates in health care today: how to control costs. The Hill's Peter Sullivan looked at how Washington will need to grapple with that issue in the future. Million-dollar drugs pose new challenge for Congress A new drug approved for the first time in May offers hope to children born with a rare genetic disease who previously often did not live past early childhood. The drug, Zolgensma, injected through the veins, provides a crucial functioning gene for people with spinal muscular atrophy who otherwise would have their muscles break down. With a one-time treatment, the drug has the potential to treat patients for a lifetime. But there's one big problem: It costs $2.1 million. That eye-popping price tag gives Zolgensma the distinction of being the world's most expensive drug — and there are others like it. A wave of innovation is bringing on new breakthrough treatments for terrible diseases, but also record highs in the prices of those medicines. The challenge will only mount as more drugs are developed. "We are entering a new phase," said Dr. Walid Gellad, director of the Center for Pharmaceutical Policy and Prescribing at the University of Pittsburgh, with a burst of "potentially curative" drugs that are "much more expensive." The question, of course, is whether these prices are justified. To patients with a fatal disease, almost any price could seem worth it for a cure. But the health care system as a whole would strain to afford massive sums for a whole range of drugs. "We're going to have to do something," said David Mitchell, president of Patients for Affordable Drugs. "We can't possibly pay whatever these drug companies demand." Lawmakers are confronting these questions as they craft legislation aimed at lowering drug prices, a rare area of possible bipartisan cooperation this year. Senate Finance Committee Chairman Chuck Grassley (R-Iowa) is floating the idea of allowing Medicaid to pay for expensive drugs over time, rather than all at once, comparing it to buying a house. House Democrats are working on legislation to allow Medicare to negotiate drug prices, a long-held goal for the party that they hope President Trump will also endorse, given his attacks on drug companies. Read more on the challenge of high-cost drugs here. |
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