In April 2021, after thirteen months of a long COVID era and after helping conduct two patient-led studies of the disease with the Patient-Led Research Collaborative (PLRC), I testified before Congress about what was needed to deal with the crisis. As I walked out of my apartment in Oakland, California, drinking salt water to help me manage my tachycardia, I was hopeful that policymakers would pay attention and take action. They seemed engaged and involved when they made comments and questions.
In my testimony, I asked for help with the COVID-19 long-term law and for the creation of a federal advisory committee. I explained why we want to have greater access to post-COVID clinics, to do more of a task of estimating prevalence. of long COVID, making sure that long COVID studies are inclusive and traditionally informed, and making sure that medical care and treatment is affordable. I also explained why other people with long COVID want greater protections and workplace hotels, greater access to disability benefits. and increased access to and investment for paid sick and family leave.
Two years later, millions more people are sick. COVID and long COVID cases are increasing every day. However, few of these policies are implemented, placing patients in a position with few assistive and treatment functions and healthcare providers with few resources and referrals.
Although the pandemic lasted for more than 3 years and members of Congress themselves faced long COVID, the COVID-19 Long Carrier Act was not even passed or enacted any COVID-19 specific legislation. In August 2022, the U. S. Department of Health and Human ServicesThe U. S. Department of Health (HHS) announced in the National Long COVID Research Action Plan that a Long COVID Advisory Committee would be established; But, at the time of writing, it doesn’t exist yet.
Although more post-COVID clinics have been set up and the Agency for Healthcare Research and Quality has put out a call for investment for them, they still vary widely in terms of quality of care and accessibility. Many have multi-year waiting lists Many still require positive COVID tests, despite transparent evidence of accessibility and accuracy issues. Many have closed their doors, even in the face of growing needs.
In other words: we have reached a new critical point in the pandemic. Even though federal fitness agencies, the White House, and even the World Health Organization have declared an end to the public fitness emergency without implementing long-term policies that can protect others from COVID and the most vulnerable, the need for greater care, treatments, and treatments has never been greater.
We now have a reliable estimate of the prevalence of long COVID thanks to the Household Pulse Survey. However, those estimates, and the disease itself, continue to be ignored or ignored by experts and even some researchers and doctors.
And while there have been a staggering number of studies on long COVID, very few are well-informed through the existing studies on chronic diseases triggered by infections, resulting in studies that overlook key symptoms, situations, and underlying mechanisms.
HHS has issued guidance on long COVID as a disability under the Americans with Disabilities Act, Section 504 and Section 1557, and the Department of Labor has a webpage with resources. However, others still face layoffs, forced departures, and a lack of office space, with a conservative estimate of another four million people out of work. No improvements have been made to disability benefits, with a significant delay and 85 per cent of programmes rejected in the first round.
Finally, the affordability of care and health care, as well as paid sick leave and family leave, have deteriorated since my testimony before Congress in 2021, as the end of the public health emergency led to the end of important Medicaid flexibilities and expiration. of state COVID on poor fitness benefits.
Meanwhile, about 6% of all U. S. adults lately have long COVID, with Hispanic/Latino people, transgender people, and cis women facing the rates.
These prevalence figures do not even apply to children, who also suffer from these symptoms and have a significant effect on schooling and extracurricular activities. Approximately 81% of people with long COVID face activity limitations, and 25% of those with long COVID face significant limitations in activity resulting from symptoms and situations such as cognitive dysfunction, post-exertional malaise, organ damage, myalgic encephalomyelitis/chronic fatigue syndrome, postural orthostatic tachycardia syndrome, movable mast activation syndrome, and small fiber neuropathy, among others. Some lose their jobs and homes, are abandoned by people they enjoy, miss birthdays and gatherings with friends, and can’t watch TV or listen to music. Given the general spread of COVID, at least 1 in 10 people inflamed by the long-coming virus, and reinfections that amplify this risk, our network is unfortunately emerging more and more as the days go by.
We have made great strides in a short period of time in identifying conceivable mechanisms, but this has not translated into a significant federal backlash that has improved patients’ lives. Sometimes, health care providers are still unfamiliar with long COVID and COVID-related situations. And even for doctors who are familiar with it, there are no remedies approved by the U. S. Food and Drug Administration. The U. S. Food and Drug Administration (FDA) is working on the possible mechanisms of long COVID.
The patients had to try a patchwork of unapproved medications, supplements and stimulations, an activity-control strategy for other people with post-exertional discomfort, who can only control symptoms so much. There are few clinical trials underway, with more budget spent on critical studies on training trials than on drugs that have been shown to be effective in treating long COVID and related conditions.
It can be easy to forget the truth about long COVID when it’s not your truth or the truth of the person you’re enjoying. It can be tempting to come out of the pandemic for those who haven’t been as directly affected. But in doing so, we forget and forget about other people with disabilities, whether they are those who are today or those who will be.
This is a pressing crisis and we will have to treat it as such. We want a Warp Speed operation for Long COVID. We want to revolutionize the workplace; integrating an economic justice framework for persons with disabilities into policy solutions; and addressing long-standing systemic barriers that keep other people with disabilities, i. e. , other people with disabilities of color, in a cycle of poverty.
In addition to the list of unimplemented recommendations from 2 years ago, we want a fair reaction that starts with:
A Ryan White Program of Care for Long COVID: We deserve to reflect the pressing efforts of the HIV/AIDS crisis to ensure life-saving medical studies and breakthroughs. This means investing in local and state governments and network-based organizations to provide comprehensive care and treatment. facilities for others with long COVID and related illnesses, who are culturally competent and use in-network fitness workers. We want to create schools and education centers inspired by the AIDS education program and centers and incorporating the classes of the Centers for Disease Control and Prevention. Eco Project.
More clinical trials and therapies: We want more clinical trials, prioritizing what the patient network needs to see tested based on their lived reports and applicable studies on infection-related chronic diseases (e. g. , antivirals, antihistamines, blood thinners, immunomodulators). other people with confirmed or suspected cases of COVID, available to other people with severe long COVID, and have a design that considers and measures differences based on the duration of illness, where patients are in their menstrual cycle, any reactions to mast cells, and post-exertional discomfort due to clinic visits or the procedure itself.
FDA Action: The company deserves to prioritize approving long COVID clinical trial protocols, encouraging quality-of-life criteria and the use of existing biomarkers, and not requiring a positive COVID test for inclusion. FDA officials will also need to consider features such as expanded access, expedited designation, and breakthrough cure designation as drugs evolve and repurpose, given the severity and effect of many other people’s symptoms. The firm also deserves to require that in any clinical trial of COVID treatments, there be a long COVID endpoint and a subset of other people with long COVID, to account for evidence that some acute COVID treatments reduce the likelihood of long COVID and/or might minimize our symptoms.
Sustainable, transparent, and coordinated studies: Learning from the good fortunes of the HIV program, we want an Office of Long COVID and Related Conditions Research within the Office of the Director of the National Institutes of Health to coordinate studies on those situations across all institutes, identify a comprehensive study agenda, meaningful patient engagement, and enable a sustainable source of investment for those diseases.
Communication Campaigns: At the federal and state levels, we need major public and provider education campaigns about long COVID, to help save long COVID, teach the public what they can experience, and enable providers to provide competent, high-quality care and care. Remedy for long COVID and chronic diseases related to infections.
Over the past 3 years, patient groups, PLRC, COVID-19 Longhaulers Advocacy Project, Body Politic, Long COVID Justice, Long COVID Alliance, and many others, have submitted policy recommendations and co-sponsored expenditures such as CARE for Long COVID. However, little action has been taken.
The urgent wishes I presented to Congress two years ago have yet to be fulfilled, with disastrous consequences for people’s lives. Political obstacles and monetary constraints are mere excuses. We want action, we want it now, and we know exactly what to do.
Lisa McCorkell is the co-founder of the Patient-Led Research Collaborative, an organization of people with long COVID and similar ailments who conduct studies on long COVID and advocate for policies that benefit other people with long COVID and all other people with disabilities. She has co-authored several key studies on long COVID, and added a landmark review in Nature Reviews Microbiology. She has a master’s degree in public policy and in the past worked for the state of California on Supplemental Nutrition Assistance Program policy. one of the other 10 people in Nature who shaped science in 2022.
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Co-Founder of Patient-Led Research CollaborativeDisclosure: Lisa McCorkell, MA, disclosed any applicable monetary relationships.
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