Long Covid Moonshot Initiative

Creating a thread to discuss the "Long Covid Moonshot" campaign. Its core demand has been $1 billion a year in funding for Long Covid research, and the organisers have done some incredibly effective advocacy.

Their initial calls to senators helped prompt the HELP hearing on Long Covid, and their phonebanking in advance of that hearing ensured that all 15 senators attended the meeting - which is no mean feat. Bernie Sanders then recently proposed legislation that seemed in large part inspired by the moonshot, and which included $1 billion a year in funding.

The moonshot organisers have, in my view, produced the most effective Long Covid advocacy to date on the political side of things.

 

The moonshot initiative is currently trying to get funding for Long Covid research from the 2024/2025 budget. This is distinct from Bernie's proposed moonshot act, which would provide funding over the course of ten years. Money from 2024/2025 appropriations would last one year. They're looking to get senators to sign a letter calling for...

- $1 billion in Long Covid research funding to the NIH Office of the Director

- $200 million to ARPA-H for 'high risk, high reward' Long Covid research

- $20 million to fund the Office of Long Covid Research and Practice

$ 13.5 million to the ARHQ to continue its dissemination of the best practices in Long Covid care

Just to put these figures in context, the NIH intramural study cost $8 million and the PACE trial was about $6.5 million - we're talking about utterly transformative sums of money.

 

Cross-posting from US news on how to support the moonshot's current appropriations effort:

We’ve just gotten word that Senators now have until FRIDAY, MAY 10TH to sign the FY25 Long Covid funding letter! 7 Senators have already signed on, but we need your help to get more onboard. If you haven't already, please consider helping out:

- Call your Senators (~4mins) https://longcovidmoonshot.com/call-guide

Calling tends to have more of an impact on our elected officials, so if you have the time, this is the best "bang for buck!"

- Send a prefilled email script (~1min) https://actionnetwork.org/letters/long-covid-research-funding-in-the-fy25-budget
This is a great low-friction option if you don't have the time or capacity for a call, and can be easily shared with friends/family!

 

I sent a letter to my Senators Casey and Fetterman.

 

I’ve shared this before but I think it is relevant in this thread

https://www.politico.com/newsletter...oting-for-the-moon-is-getting-harder-00154868 “Shooting for the moon is getting harder - Politico US” 29 April 2024

CONGRESS PULLS BACK $$ — President Joe Biden’s cancer moonshot — his plan to lower the death rate by half over 25 years — isn’t the bipartisan priority it once was.

The spending package Congress passed in March doesn’t include funding for the 21st Century Cures Act, the 2016 law that provided the moonshot’s most direct funding stream — $1.8 billion in total.

The NIH budget also fell, from $47.5 billion in fiscal 2023 to $47.1 billion this year, a net cut of $378 million.

What’s going on? The new budget is tight across the board, reflecting Republicans’ control of the House, deficit concerns and, not least, the GOP’s desire to deny Biden a win months before the election.
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It’s looking like many republicans are not keen on funding biomedical research of any kind. So, US citizens, calling/mailing your representatives, and voting for someone you think will represent you well, is very important this year.

 

Do they have any information available about who is running the organization?

 

I don't think it's yet a formalised organisation, it's more a grassroots effort at the moment. There are more prominent members with large twitter followings, but I'm not aware of there being a defined leadership. I'm only partly "in the know" here - I'm not a part of the moonshot initiative myself. When I was stronger and able to do advocacy, I worked with several longhaulers who went on to play important roles in the moonshot.

 

Axios Article: https://archive.ph/2024.05.14-18360...05/14/senators-push-long-covid-research-boost

A group of Democratic senators backed by patient advocacy groups is pushing for over $1 billion in new spending for long COVID research in the next government funding package.

Driving the news: Sens. Ed Markey, Tim Kaine and Tammy Duckworth are calling for $1 billion for NIH and $200 million for ARPA-H for long COVID research.

Reality check: As the FY25 appropriations process gets underway, spending caps are creating a tough environment for major spending increases.

• Senate Appropriations Chair Patty Murray said in a statement to Axios she is "going to keep pushing for essential research funds to help treat, cure, and prevent long COVID."
• She noted, though, that "we are working with extremely tight funding caps that I have never supported — but it is essential we continue to pursue breakthroughs to help patients struggling with long COVID."

The big picture: Senate HELP Committee Chairman Bernie Sanders also last month released a draft bill to address long COVID that would provide $1 billion per year for 10 years in mandatory NIH funding and take steps to better coordinate research.

It will be hard enough to pass a funding bump through the regular appropriations process, let alone enact a standalone stream of new mandatory funding, which tends to draw concern from debt-conscious Republicans
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What I pasted are random Snippets of the article (not the full article)

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Anyone can share an archive link of this axios article publsihed today?

Long COVID may have slipped from the headlines, but a group of senators wants it to loom large in the coming appropriations process.
https://www.axios.com/pro/health-care-policy/newsletters/2024/05/14/health-care-long-covid-funding

 

Moved post

STAT News: 'Long Covid feels like a gun to my head'

'I have spent my career studying infectious diseases that fall under the heading of neglected tropical diseases. Now I have a neglected disease — long Covid — an incurable (for now and for me) disease.'

'I am inspired by the work of the long Covid Patient-Led Research Collaborative and the research being done to uncover the causes of and cures for long Covid. But it’s not enough. Given the widespread burden of disease and the losses to the economy and social fabric it is causing in the U.S. and around the globe, the U.S. government must act quickly and decisively to curb long Covid. The Long Covid Moonshot is a collective advocating for $1 billion in annual research funding for long Covid, akin to the Operation Warp Speed that enabled the first generation of Covid-19 vaccines. U.S. Senator Bernie Sanders (D-Vt.) recently released a Long Covid Moonshot legislative proposal. Bipartisan support for long Covid is essential so that someday no one needs to care about Covid and its lasting effects'

'Long Covid feels like living with a gun to my head. Please pull the trigger on the moonshot.'

Rachel Hall-Clifford, Ph.D., is an assistant professor of global health, human health, and sociology at Emory University in Atlanta.