Health Rising’s 2024 BIG (little) End of the Year Donation Drive

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An $11 billion dollar moonshot for long COVID, ME/CFS and other post-infectious diseases… Now that’s real money! The Patient-Led Research Collaborative for Long COVID called the “The Long COVID Research Moonshot Act of 2024” a “historic step” for long COVID and associated conditions – and it is.

Creating a long-term long-COVID and post-infectious disease program out of whole cloth at the NIH – it doesn’t get more historic than that. Pass this bill and the long COVID, ME/CFS and post-infectious disease communities will look back decades from now and see this as the seminal moment that legitimized and powered these diseases forward.

This bill had its genesis in a piece in Nature last October in which Lisa McCorkell, cofounder of the Patient-Led Research Collaborative for Long COVID and Michael Peluso MD, made a bold call for a ten-year billion-dollar-a-year moonshot for long COVID.

The two asserted that absent committed action by the National Institutes of Health, long COVID research would likely die on the vine. They had plenty of reasons to believe that: the NIH’s neglect of long COVID until Congress explicitly provided money for it, the disaster that the NIH’s RECOVER program has been so far, and the NIH’s unwillingness to create an infrastructure outside of RECOVER to support the disease.

Let’s not forget the historical neglect the NIH has shown for all long-COVID-like conditions. The $13 million/year ME/CFS gets makes it the most underfunded disease per disease burden at the NIH. Post-Treatment Lyme Disease Syndrome (PTLDS) has been around for over 20 years yet the NIH only formally started studying it in 2023. Postural Orthostatic Tachycardia Syndrome (POTS) was discovered over 30 years ago, yet the NIH didn’t start tracking POTS funding until 2020. This year, it provided $4 million to study a disease that affects millions.

Generations of complex, chronic illness patients have been on the waiting list to get even decent funding. It’s a staggering institutional failure, but there’s always been one workaround – and that’s Congress. Thankfully, the NIH’s administrators are not solely in charge of it. The NIH is beholden to the hand that feeds it, and that means Congress. Congress can, with the flick of a pen, turn the NIH and its decades of neglect on its head – and that’s what this bill aims to do.

The Proposal

The bill has gone through quite an evolution. In April of this year, Senator Bernie Sanders presented a proposal to gather interest for a bill mandating $10 billion NIH funding for long COVID. The proposal wasn’t perfect: it didn’t include any other post-infectious diseases, resulting in Solve M.E. producing a letter writing campaign to Senator Sanders. The pushback worked.

The Long COVID Moonshot Blasts Off (Without ME/CFS/FM, Lyme, POTS, etc.)

The Bill

The bill now requires research “to understand the similarities and differences between Long COVID and other infection-associated chronic conditions with similar phenotypes, such as myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, and post-treatment Lyme disease syndrome/persistent Lyme disease, and how activities funded by the Program could improve understanding of such other conditions.”

Besides directly funding research, the bill will also create a long-COVID database, a new grant process that would accelerate clinical trials (yah!), fund public education, long-term surveys, multidisciplinary long-COVID clinics and more.

  • Read the bill text, here.
  • Read the summary, here.
  • Read the section-by-section, here.

The NIH – Really?

One could ask, why trust the NIH, when the general consensus is that it’s flushed about a billion dollars down the toilet with the RECOVER program? There are a number of reasons it has to be the NIH.

For one, the NIH is probably the only place that can handle that kind of funding. For another, we need to get long COVID (and ME/CFS, etc.) embedded in the NIH in the same way heart disease, diabetes and cancer are. The NIH does fine with those diseases – it’s these nasty, complex, post–infectious diseases that it’s at sea with right now. Given enough funding and time, it will do fine with them.

Plus, whatever the NIH’s faults with these kinds of diseases, it’s still easily the biggest medical funder on the planet; e.g. there is no substitute – we have to find a way to get locked in at the NIH.

Finally, RECOVER’s problems (e.g. researchers who didn’t do their homework) are well-known – and can be avoided. Disasters at new large-scale efforts like the RECOVER Initiative are not uncommon, and can and often are remedied over time.

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Besides, RECOVER’s faceplant is undoubtedly why this bill requires that the Long-COVID Research Program be led by a Director with a “demonstrated commitment to Long COVID and other IACCs (infection associated chronic illnesses) and consulted by an Advisory Board that includes researchers with Long COVID research experience and people with lived experience.”

All Hands on Deck Needed

making a difference

This is the chance to make a difference for millions – even hundreds of millions -of people.

Including ME/CFS and other post-infectious diseases made both ethical and pragmatic sense. Passing a bill this size, is, after all, not going to be easy. (Historic things rarely are.) Lisa McCorkell noted, “We have never seen anything like this before in Congress”, and this is the “most comprehensive Long COVID bill to ever be introduced in Congress”. That’s understating things. The 2020 $1.15 billion RECOVER bill is peanuts next to this monster of a bill.

Senator Sanders has lined up some heavy-hitting co-sponsors (Sens. Tammy Duckworth (D-Ill.), Tim Kaine (D-Va.), Ed Markey (D-Mass.), Tina Smith (D-Minn.), and Peter Welch (D-Vt.) (but no Republicans). Over 45 organizations, including the Solve ME/CFS Initiative and MEAction, support the bill as well.

Solve ME called the bill “landmark legislation” that addresses the “urgent needs of millions of Americans” and anticipated that passing the bill would expedite “huge research leaps“.

This will likely be an uphill climb, but summiting this mountain would set long COVID and post-infectious disease research on a glide path for success for the next ten years.

Change is in the air. A recent study found that 400 million people across the globe have some form of long COVID.  The recent National Academy of Sciences Report on long COVID gave long COVID validation at the highest level, and the push for an Office for Complex, Chronic Diseases at the NIH means that the post-infectious disease communities just aren’t going to put up with being treated as second-class citizens anymore.

The NIH shouldn’t just be there for the big diseases like cancer and heart disease – it should be there for everyone who is experiencing ill health. It’s time for all of us to have a seat at the table and that’s what this bill is all about.

The bill has been introduced but the campaign for the Moonshot has not yet begun.

 

 

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