Policy & Advocacy
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Long Covid advocates send “unhappy holiday” cards to their representatives
This month, the organizers of Long Covid Moonshot put together an “Unhappy Holidays” card, letter, and calling campaign directed at legislators. Some from the international community joined in too, writing cards to their respective governments. The creative effort featured colorful, funny, and heartbreaking letters from people with Long Covid and their allies to advocate for…
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#MEAction co-founder Beth Mazur passes away
On Friday, the ME advocacy group #MEAction shared that their co-founder, Beth Mazur, passed away after living with myalgic encephalomyelitis (ME) for 15 years. “She was a selfless beacon of hope and light for so many in our community and she demonstrated an unwavering commitment to the cause,” #MEAction wrote on their website.
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Policy experts, scientists, disability groups urge Biden to address the Long Covid crisis
A wide breadth of policy experts, scientists, and disability groups are calling on President Biden to urgently address the Long Covid crisis with annual funding in the billions. In the open letter published on Monday, health policy experts, leading Long Covid researchers, clinicians, journalists, chronic illness and health advocacy groups, and many others demand that…
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HHS gave million-dollar grants to nine Long Covid clinics; here’s how they plan to use the funding
This fall, the federal government announced a new grant program to support Long Covid care: the Agency for Healthcare Research and Quality (AHRQ) awarded million-dollar grants to nine Long Covid clinics across the country, designed to help these centers extend their reach and develop best practices for addressing this complex chronic disease. Each clinic can…
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HIV may increase the risk of Long Covid. Why aren’t major advocacy groups addressing it?
Advocates say that the government is not doing enough to support people with Long Covid, nor are most well-funded LGBTQ+ or HIV advocacy groups, even though Long Covid may be burdensome for their communities. Recent studies suggest that HIV may be an increasedrisk factor for Long Covid and that people with HIV have an elevated…
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Census change would reduce estimates of disability in U.S., impacting community resources and Long Covid research
The U.S. Bureau of the Census is considering a change to how it tracks disability, which would lead to significant drops in estimates of how many Americans are disabled. The change may result in cuts to funding and resources for disabled communities, experts say, including the millions of Americans with Long Covid.
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The HHS invites nominees for a new committee on Long Covid, but will it listen to them?
On Thursday, the Department of Health and Human Services (HHS) announced they are seeking nominations for the Secretary’s Advisory Committee on Long Covid, which will incorporate perspectives from the public to inform the executive branch on Long Covid. The HHS will consider up to 20 members from a wide array of expertise from people with Long…
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A new aid in the doctor’s office: Introducing the Long COVID Treatment Guide
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Where have all the Long COVID clinics gone?
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National COVID-19 trends, March 10
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Research updates, March 10
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My child and I both have Long COVID. Even in COVID-aware spaces, we are excluded because of their pre-existing disability.
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