Solve M.E. Advocacy Director Emily Taylor Answers Your Questions About H.R. 7057

Q: For those of us who aren’t familiar, can you tell us what H.R. 7057 is? 

A: H.R. 7057 is a bill in the House of Representatives, currently pending consideration by the House Energy and Commerce Committee.  It is also called the Understanding COVID–19 Subsets and ME/CFS Act or “UCS ME/CFS Act” It was introduced by Representative Jaime Raskin on May 28, at the end of ME/CFS Awareness Month.

Also, May 28 just happens to be the same day that Senators Markey and Cramer led their landmark letter asking for ME/CFS to be included in the COVID-19 relief package. The two items call for the same policy solutions, through different means.

To quickly summarize, H.R. 7057 authorizes funding and coordinates National Institutes of Health (NIH) research and data collection for ME/CFS and COVID-19 “long-haulers.” I am especially excited about this legislation because it REMOVES present legislative barriers to ME/CFS federal funding and education programs. With those barriers removed, our advocacy work has new opportunities to grow funding for ME/CFS like never before. 

To go into more detail about H.R. 7057, the Bill has two parts: The first section addresses NIH research funding for ME/CFS and COVID-19 subsets and the second, smaller section addresses HHS investments in medical education.

1.The most important part of the bill is actually only one line: There is authorized to be appropriated to carry out this section $15,000,000 for each of fiscal years 2020 through 2024.” That’s $15 million annually for ME/CFS research for 4 years — totaling $60 million. You’ll notice those two odd words “authorizing to be appropriated.” Authorizing means the agency, in this case the NIH, has received congressional approval to spend $15 million for the purpose described in the bill. Now that the funds are approved, our advocacy team and Congressional champions will call upon the appropriations subcommittee members to finalize the distribution of money into our newly authorized program.

What does that program look like? Well, that’s what the rest of the section describes. H.R. 7057 has very clear guidelines on how the NIH should use this money. This includes:

    • Robust data collection and data sharing
    • More and bigger Collaborative Research Centers
    • Develop a research agenda with stakeholders, and
    • New disease specific funding announcements

Nearly last, but certainly not least, H.R. 7057 requires a report to Congress within 2 years to demonstrate the agency’s progress. Ensuring oversight and action is critical to ensuring the work is headed in the right direction.

2. The second and much smaller section of H.R. 7057 addresses medical education. It adds a new section to existing law about medical education and public outreach programs, specific to ME/CFS. These sections are like a menu of choices and the Secretary of HHS decides what items on the menu are prioritized. But, right now ME/CFS is not even on that menu. With this new language in place, we’ll now be able to advocate for HHS to invest in new ME/CFS public and medical education and, when combined with the new information regarding post-COVID ME/CFS, we’ll convince HHS leadership that ME/CFS education programs are the best choice.

Q(follow-up) – Why only $15m? Shouldn’t we ask for more?

A: You’re right. ME/CFS needs far more federal investment. In fact, even Dr. Koroshetz of the NIH said we’d need “10 or 20 times the funding” to see immediate progress. But unfortunately progress is not what Congress is looking at. Congress is looking at the existing government programs and how big they are. Remember, this is the first time Congress is officially authorizing money for ME/CFS…ever! So they have no point of reference for where to begin and they are very, very concerned about government waste and there are many other funding priorities.

Imagine ME/CFS research funding at the NIH as a bucket and money going into the program as water into the bucket. We are currently getting somewhere around $12 million of water in our bucket from the different NIH agencies. These agencies are taking little cups and *choosing* to pour them into the ME/CFS bucket. 

So now Congress comes along, and wants to put more water in the bucket by building a brand new hose (in the form of H.R. 7057). But all this time the bucket has never held more than $15 million. So, that’s certain. Congress knows the bucket can hold that much and they have hundreds of thousands of other buckets to consider, and they ABSOLUTELY don’t want to overfill the bucket… because that spillover is the dreaded government waste that everyone hates! No government waste!

As Congress sees it, if the NIH feels the bucket can hold more, the NIH can still add more. Next year, we return to Congress and demonstrate how the bucket wasn’t full with $15 million, and we ask for more water in the hose to ensure the bucket is filled. Then, the following year, we demonstrate AGAIN how the bucket *still* isn’t full. And we do this again, and again, each year until we are seeing ME/CFS research funded at a level that is reflective of the disease burden and truly moving the scientific field forward.

Q: How did this legislation come to be?

A:  I suppose conceptually this legislation began in my first 6 months here at Solve M.E. During that time, I did a lot of policy research trying to figure out why NIH funding was so low when compared to other diseases. And I quickly realized what a precarious funding situation we are in. All of our NIH programs are currently discretionary—that’s policy speak for “optional,” or you could also say it’s “at the whims of agency decision makers.” And, I know first-hand that the winds of politics and crisis are fickle. All it takes is one scary news story (or one big scary virus) to shift everyone’s attention and funding to a new politically charged issue or scapegoat. Back then, I made it one of our primary advocacy goals to put up some protective walls around our research funding to ensure the sustainability of the program. So, that first draft of what would become H.R. 7057 was started long before COVID-19 was a household name.

But when COVID-19 struck, there was this looming shadow of post-viral ME/CFS there, like a flicker just out of sight. Then stories started popping up about #longCOVID or what are now called “long-haulers” with stories and symptoms all too familiar. That shadow was starting to solidify. When we approached Representative Raskin and his team back in February, they immediately recognized and shared our concerns about post-COVID ME/CFS and were amazing in working through the details for the final version. I am so grateful for the congressman’s foresight and trust. He is an incredibly effective legislator and when he decided this issue needed action everything spun into motion far faster than I imagined would be possible! His leadership has been essential to the bill’s success so far.

Q:  What do you hope this legislation will accomplish? How will this legislation change the field of ME/CFS research?

A: Well, H.R. 7057 is first of its kind to authorize ME/CFS research funding. So that is a significant statement to the NIH and to researchers in the field. It says this research area has the attention of Congress and that means it has a sustainable future.

In terms of specific outcomes for research funding, I can tell you what I expect and what I hope.

I hope that the 23 different NIH institutes continue to provide discretionary funding and increase that funding as well! I hope that money will be added to the new congressional funding – and effectively double spending for ME/CFS to $30m a year.

Most likely, some institutes may not feel the same and might reduce their giving. But some institutes, like the National Institute of Allergy and Infectious Diseases and the National Institute of Neurological Disorders and Stroke, have made commitments to ME/CFS programs and have been responsive to pressure from the community. I think these two agencies will continue to invest in ME/CFS and, combined with H.R. 7057, we’ll see a sizable increase in funding.

Q: How will this affect the growing community of “long-haulers” experiencing continued symptoms of COVID-19? 

A: The biggest impact of this legislation will be in the research space, so I think the biggest impact to the “long-haulers” will also be about research. It’s an investment in the scientific understanding of the potential connection between ME/CFS and post-COVID symptoms.

I think the most exciting part of H.R. 7057 for the COVID-19 “long-hauler” community is the potential for fast-paced scientific results. Many long-haul studies are starting from scratch, rebuilding an entirely new research program from the ground up. That takes a lot of time and even more resources. H.R. 7057 has the potential to rapidly accelerate research because it expands existing ME/CFS research programs. Instead of starting from scratch, it plugs in the COVID-19 long-hauler study into a robust program, which is already set up to study exactly the symptoms and underpinnings of post-viral impacts.

But, I understand that for someone suffering currently with new, strange and scary symptoms, someone who is unsure about the future of their health, saying, “We’ll accelerate research!” isn’t the answer you’re looking for. You want to get help and get better, now. As you should! For that need, I think the medical education part of H.R. 7057 will be a real source of hope. I believe these medical and public education provisions will make the most immediate impact for improved medical care. It may not be a magic pill to make you better, but improved education will mean your health journey will be so much smoother and more helpful than the mistrust, gaslighting, and horrible mistreatment that ME/CFS patients have faced in the past. I truly believe improved education will make many,  many people’s experience better.

Q: What are the most recent developments?

A: We have 20 bipartisan cosponsors! That is huge and we need more. Our goal is to double our cosponsors in the House before the end of September.

Depending on how negotiations are going around the COVID-19 relief packages, hopefully our policy solutions will gain enough support to be included there. 

Here are all of the Representatives who have co-sponsored so far:

Rep. Payne, Donald M., Jr. [D-NJ-10] 07/20/2020
Rep. Dean, Madeleine [D-PA-4] 07/20/2020
Rep. Davis, Danny K. [D-IL-7] 07/20/2020
Rep. Wasserman Schultz, Debbie [D-FL-23] 08/07/2020
Rep. Kirkpatrick, Ann [D-AZ-2] 08/07/2020
Rep. Sablan, Gregorio Kilili Camacho [D-MP-At Large] 08/07/2020
Rep. Higgins, Brian [D-NY-26] 08/07/2020
Rep. Porter, Katie [D-CA-45] 08/07/2020
Rep. Pocan, Mark [D-WI-2] 08/07/2020
Rep. McGovern, James P. [D-MA-2] 08/07/2020
Rep. Levin, Andy [D-MI-9] 08/07/2020
Rep. Kilmer, Derek [D-WA-6] 08/07/2020
Rep. Fitzpatrick, Brian K. [R-PA-1] 08/14/2020
Rep. Grijalva, Raul M. [D-AZ-3] 08/14/2020
Rep. Swalwell, Eric [D-CA-15] 08/14/2020
Rep. Omar, Ilhan [D-MN-5] 08/14/2020
Rep. Lynch, Stephen F. [D-MA-8] 08/14/2020
Rep. Mucarsel-Powell, Debbie [D-FL-26] 08/14/2020
Rep. Suozzi, Thomas R. [D-NY-3] 08/14/2020
Rep. Perlmutter, Ed [D-CO-7] 08/14/2020

 

Q: How can community members get involved in this effort? 

A: First and foremost, ask your member to co-sponsor H.R. 7057. Right now, that’s the most important way to build political interest and momentum for our efforts.

Here’s what you can tell your Representative: 

  • “I support the H.R. 7057 because:
  • Up to 36% of people with COVID-19 are not recovering and reporting lasting symptoms like ME/CFS.
  • The NIH needs to expand and coordinate post-viral disease research. Let’s use the programs that have already been built for this instead of making new ones from scratch!
  • H.R. 7057, will address the predicted rise in ME/CFS diagnoses linked to increasing COVID-19 cases across the country.”

We’re working on a complete action center for folks to use. If you have the energy and desire to be a leader for your district, email me at ETaylor@solvecfs.org and we can set up a strategy specific to your individual needs.

If you still have questions, we’ll also be hosting a town hall (I’m calling it a “Legislative Cafe Chat”) on Wednesday, September 9, 2020 at 2:30 PM PT / 5:30 PM ET. Join us for a cup of tea and a virtual conversation about H.R. 7057.

To RSVP, please send an email to jbrownclark@solvecfs.org.