The shadow of Long COVID

Between 5 and 30 million Americans are suffering with symptoms of Long COVID.

Below are several bills that focus, in different proportions, on directly helping patients, educating medical providers and researching this new syndrome that can manifest symptoms in almost every system of the body, including our brains. Considering how many of their constituents are affected, the cosponsor lists for these bills are surprisingly short. Let’s change that!
(More information on each bill is included at the bottom.)

Action #1: Tell your legislators you expect to see their name cosponsoring H.R.7482/ S.4015 – TREAT Long COVID Act.

“A just and equitable pandemic recovery must include the millions of people living with Long COVID, a community whose voices and suffering have been ignored for far too long. This pandemic has had prolonged health impacts on our most vulnerable individuals and families—particularly in Black, brown, and historically marginalized communities—and it is long past time we provide accessible treatment for our long haulers who have been living with the physical and mental anguish without adequate care,” said Rep. Pressley (MA-07).

The H.R.7482/S.4015 – TREAT Long COVID Act (news release here) would expand treatment for Long COVID nationwide.

Minimal script:  I’m calling from [zip code] and I want Rep./Sen. [___] to support [Rep. – H.R.7482/Sen. – S.4015] – TREAT Long COVID Act.

  • Additional script for Reps: H.R.7482 is currently in the Energy and Commerce Committee and I want Rep. [___] to tell its members that this bill is important to [his/her] constituents.
  • Additional script for Reps./Sen.: [Add a personal link – “Long COVID is affecting me/friends, family/ coworkers is this way______]. Therefore, passing this bill is really important to me.
  • (Reps. Brownley and Carbajal are not yet cosponsors)
  • (Sens. Feinstein and Padilla are not yet cosponsors)

Action #2: Email your senators to support S.3726- CARE for Long COVID Act.

S.3726 Comprehensive Access to Resources and Education (CARE) for Long COVID Act is an even mix of research, education of both patients and medical providers and direct assistance.
(Sens. Feinstein and Padilla are not yet cosponsors.)

Sample script for your senators: [My life/ My ____’s life] has been impacted by post-viral illness, just like 23 million Americans who have experienced Long COVID (according to a recent GAO report).

Recently, Senators Kaine, Markey and Duckworth introduced the S.3726 CARE for Long COVID Act, legislation to help people living with long-term COVID-19 symptoms and post-viral illness. This legislation is critical because it will:

  • Accelerate research by centralizing data regarding long COVID patient experiences;
  • Increase understanding of treatment efficacy and disparities by expanding research to provide recommendations to improve the health care system’s responses to long COVID;
  • Educate long COVID patients and medical providers by working with the CDC to develop and provide the public with information on common symptoms, treatment, and other related illnesses;
  • Facilitate interagency coordination to educate employers and schools on the impact of long COVID and employment, disability, and education rights for people with long COVID; and
  • Develop partnerships between community-based organizations, social service providers, and legal assistance providers to help people with long COVID access needed services.

Please support the CARE for Long COVID Act today.

Action #3: Ask your representative to pass H.R. 2754 – COVID-19 Long Haulers Act.

This is actually bipartisan legislation (!!!) authorizing and funding research and education initiatives benefiting so-called “long haulers” was written with imput from Solve M.E. and members of the Long COVID Alliance.

Minimal script for your representative:  I’m calling from [zip code] and I want Rep. [___] to support H.R.2754 – COVID-19 Long Haulers Act.

(Reps. Brownley and Carbajal are not yet cosponsors)

CONTACT INFO.

Get your friends and family in RED states to call theirs as well!

  • Rep. Julia Brownley (CA-26): email, DC (202) 225-5811, Oxnard (805) 379-1779, T.O. (805) 379-1779
  • or Rep. Salud Carbajal (CA-24): email. DC (202) 225-3601, SB (805) 730-1710 SLO (805) 546-8348
  • Senator Feinsteinemail, DC (202) 224-3841, LA (310) 914-7300, SF (415) 393-0707, SD (619) 231-9712, Fresno (559) 485-7430
  • and Senator Padilla: email, DC (202) 224-3553, LA (310) 231-4494, SAC (916) 448-2787, Fresno (559) 497-5109, SF (415) 981-9369, SD (619) 239-3884
  • Who is my rep./ senator?: https://whoismyrepresentative.com

DEEPER DIVE

(Michelle at Small Deeds Done) Long COVID impacts between 5-30 million Americans. For reference: That’s five Missouris. Or three Michigans. Or one Texas. In other words, this is a massive crisis, and one that

The H.R.7482/S.4015 – TREAT Long COVID Act (news release here) would expand treatment for Long COVID nationwide by:

  • Authorizing the Department of Health and Human Services to award grants up to $2,000,000 to health care providers, including community health centers;
  • Granting funding for the creation and expansion of multidisciplinary Long COVID clinics to address the physical and mental health needs of patients;
  • Prioritizing funding for health providers that plan to engage medically underserved populations and populations disproportionately impacted by COVID-19;
  • Ensuring that treatment is not denied based on insurance coverage, date or method of diagnosis, or previous hospitalization;
  • Encouraging ongoing medical training for physicians in Long COVID Clinics and other health care workers serving patients; and
  • Requiring grantees to submit an annual report on its activities that includes evaluations from patients.

S.3726 Comprehensive Access to Resources and Education (CARE) for Long COVID Act

  • Why do we need the CARE for Long COVID Act?
    • A significant number of COVID-19 survivors experience serious lingering symptoms, including neurological, cardiovascular, respiratory, and mental health symptoms, months after infection with the SARS-CoV-2 virus. One systematic review estimated more than half of survivors experience some form of post-acute sequelae of COVID-19 infection (PASC), commonly known as long COVID, six months after exposure to the virus.
    • With over 75 million cases of COVID-19 recorded in the United States, long COVID has emerged as a complex and urgent public health concern. While initiatives exist at the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC) to research the long-term effects of COVID-19, additional resources are needed to aid our understanding of the symptoms of long COVID, as well as reduce barriers to care and disparities in diagnosis and treatment.
    • As long COVID lingers, adults and children with long COVID require resources to navigate workplaces and schools, including support in accessing disability benefits if needed. The Biden Administration has taken the important first step of recognizing long COVID as a disability, but we must do more to ensure that people have access to adequate social supports and accommodations or other resources as required by law.
  • What will the CARE for Long COVID Act do?
    • The CARE for Long COVID Act will:
    • Accelerate long COVID research by authorizing the Patient-Centered Outcomes Research Institute (PCORI) to centralize and synthesize robust data-sets regarding patient experiences with long COVID for future research;
    • Improve understanding of long COVID treatment efficacy and disparities by expanding the Chronic Conditions Data Warehouse research database at the Centers for Medicare and Medicaid Services and authorizing the Department of Health and Human Services to study and provide recommendations on improving the health care system’s response to long COVID;
    • Educate long COVID patients and medical providers through efforts at the CDC to develop and disseminate information on common symptoms, treatment, and other post-viral illnesses and conditions related to long COVID;
    • Facilitate interagency coordination to educate the public, including employers and schools, on the impact of long COVID and the rights associated with employment, disability status, and education for individuals with long COVID; and
    •  Develop partnerships between community-based organizations, social service providers, and legal assistance providers to help individuals with long COVID access needed services.
    • Supporting Organizations: American Academy of Physical Medicine and Rehabilitation, American Federation of State, County, and Municipal Employees (AFSCME), American Physical Therapy Association, Association for University Centers on Disabilities, Community Legal Services of Philadelphia, COVID-19 Longhauler Advocacy Project, International Association of Fire Fighters, Kennedy Krieger Institute, Long COVID Families, National Center for Health Research, National Organization of Social Security Claimants’ Representatives (NOSSCR), Solve M.E., Survivor Corps, The Arc

H.R. 2754 – The COVID-19 Long Haulers Act H.R. 2754 would authorize:

(prnewswire)

  • $30 million for research and development of centralized patient registries and biobanks through the Patient-Centered Outcomes Research Institute (PCORI) 
  • $33 million for the Agency for Healthcare Research and Quality (AHRQ) and Centers for Medicare & Medicaid Services (CMS) to research and provide recommendations to improve the health care system’s response to long-term symptoms of COVID–19 
  • $30 million for the Centers for Disease Control and Prevention (CDC) to develop and disseminate information for medical providers and the general public about common symptoms, treatment, and other post-viral illnesses 

Solve M.E. embraces and supports many post-infectious chronic illness communities, such as: ME/CFS, Long COVID, Postural Orthostatic Tachycardia Syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorder (HSD), and Mast Cell Activation Syndrome (MCAS). The Long COVID Alliance and its co-founder Solve M.E. are leveraging their collective knowledge and resources to educate policymakers and accelerate research to address the emerging challenges facing those with Long COVID and related post-viral illnesses.

“Long COVID presents an extreme threat to our ability to fully recover from this pandemic,” said Rep. Jack Bergman (R-MI). “The COVID-19 Long Haulers Act will give us the tools that we need to understand, identify, and treat the long-term symptoms of COVID-19. I’m proud to help introduce this bill and I’m thankful for the work at the Long COVID Alliance and Solve M.E. and all they’ve done bringing this issue to the forefront.”

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