Policy & Advocacy
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Millions of Americans have Long COVID. Will Kamala Harris acknowledge them?
Advocates say that people with Long COVID, a potentially debilitating chronic disease that can impact all parts of the body, represent a growing voting bloc in this year’s presidential election. Leaders from Long COVID advocacy groups and the broader disability community are considering how to make their case to Harris’ staff, with a particular interest…
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A brief, oral history of mask blocs: Part 1
Mask blocs are grassroots mutual aid groups that distribute high-quality masks, such as N95s, for free in response to public health failures during the ongoing COVID-19 pandemic. Many were created and are led by disabled people, many of whom had little or no prior organizing experience. Many include organizers who have Long COVID. Most of…
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“Perfect storm” of criminalization: Analyzing mask bans
While the conversation around mask bans has focused on new laws and bills, 21 states and many municipalities have laws banning masks and/or disguises in different settings, which is more than other organizations have reported. Even where these bans have apparent limitations or exemptions, the finer language of the laws leaves all COVID-conscious people vulnerable.…
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Q&A: NIH Director Dr. Monica Bertagnolli on next steps for RECOVER, future Long Covid research plans, and more
Betsy Ladyzhets spoke with Dr. Monica Bertagnolli, director of the National Institutes of Health (NIH), in a wide-ranging interview discussing the agency’s efforts to further research into Long Covid and related diseases. In the interview, Bertagnolli described a new phase of RECOVER, called Treating Long Covid, which responds to the Long Covid community’s criticism with…
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Sen. Bernie Sanders introduces $10 billion Long Covid Moonshot legislation to support research, healthcare, education
Last week, Sen. Bernie Sanders introduced the Long Covid Research Moonshot Act of 2024. The bill allocates $1 billion in federal funding per year for the next 10 years for Long Covid research, treatments, public health education, and expanded healthcare. A draft version of the Act received thousands of comments from the Long Covid community…
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New NASEM reports offer broad definition, highlight the seriousness of Long Covid
The field of Long Covid research reached a major milestone last week with the release of a new report from the National Academies of Sciences, Engineering, and Medicine (NASEM) outlining a working definition of the disease.
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Black and Unbelieved: A conversation with filmmaker Chimére Sweeney
Coming down with Covid-19 on March 22, 2020 completely altered filmmaker Chimére Sweeney’s life. A Black middle school English teacher in Baltimore, Maryland at the time, Sweeney was shocked to find herself disregarded by doctor after doctor as she pushed to find answers when she was still sick weeks, months, and then years after infection.…
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‘They bungled it:’ NIH documents reveal how $1.6 billion Long Covid initiative has failed so far to meet its goals
In February 2021, the National Institutes of Health launched a new $1 billion initiative to study Long Covid, a chronic disease that has changed the lives of millions of Americans. Three years later, the NIH initiative, called RECOVER, has not met these goals, according to a detailed review of budget and planning documents obtained through…
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Long Covid advocates call out Biden, ask for $1.2 billion of 2025 NIH budget
Last week, a delegation organized by the grassroots advocacy group the Long Covid Campaign traveled to Washington D.C., asking Senate leaders to accelerate over a billion dollars in funding for Long Covid research with the Biden administration’s fiscal year 2025 budget for the National Institutes of Health (NIH). The advocates made themselves known in the…
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Should people with Long Covid be donating blood?
In the fall of 2009, researchers at a lab in Reno, Nevada, said they detected a potentially transmissible virus in the blood of people with myalgic encephalomyelitis (ME). The study led the American Red Cross to ban blood donations from people with ME. The study was retracted in 2011 and the Red Cross guideline was…
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