How data gaps contribute to financial challenges for people with Long COVID

This week, I had a story published at Kaiser Health News (KHN) about barriers that people with Long COVID are facing as they apply for disability benefits, focusing on programs offered by the federal Social Security Administration. For me, working on this story highlighted the consequences of the U.S.’s poor data collection on Long COVID.

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12 statistics showing the pandemic isn’t over

Last Sunday, 60 Minutes aired an interview with President Joe Biden in which he declared the pandemic is “over,” noting that everyone at the Detroit Auto Show “seems to be in pretty good shape.” But there are millions of Americans Biden wasn’t seeing: people who aren’t in good shape.

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COVID source shout-out: Millions Missing protest

Tomorrow afternoon, patient-advocates living with Long COVID and other chronic diseases will be at the White House demanding that the federal government act urgently to address these conditions. The protest’s demands include nationwide education on ME/CFS and Long COVID, education specifically for doctors in diagnosing these conditions, funding for research and potential treatments, and economic support for patients.

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