Patient Perspectives on Long COVID

Gina Assaf is a Long COVID patient advocate who has made significant contributions to the field of patient-led research for Long COVID. She is the co-founder and co-lead of Patient-Led Research collaborative (PLRC), a global collaborative whose mission is to facilitate patient-led research into Long COVID while following rigorous research methodology. She is also a digital design researcher, consultant and strategist for the government and global development sector.

Michael Sieverts has been living with the disabling symptoms of Long COVID since his acute infection in March 2020. As a patient/advocate, he works with the Patient-Led Research Collaborative, the Long COVID Alliance, the Network for Long COVID Justice, and ME Action. He has a background in science and technology policy. Over the course of an almost 40-year career in public service, he has worked for the Congressional Budget Office and the National Science Foundation.

Liza Fisher is a national healthcare advocate and yoga teacher committed to providing education around Long COVID and associated conditions. After being hospitalized for months and becoming disabled by long COVID, Liza began working with advocacy, research, and policy. Liza has co-authored research manuscripts, been a patient representative for NIH’s RECOVER Initiative, and testified before Congress. She also serves on the Long COVID Alliance’s Executive Committee.

Charonda Johnson is the Strategic Partnerships Manager for COVID Survivors for Change. Following her career in the U.S. Air Force, Charonda began working with military families who were grieving the loss of a family member. After losing her father to COVID-19, Charonda became involved with local efforts in Delaware to create a memorial for COVID-19 and ensure that workers have access to paid family and medical leave.

Andrew Wylam is a lawyer who specializes in health, employment, and disability law. He have worked as a chronic disease advocate for his whole career, including several years working as a Congressional lobbyist for another patient organization. During the coronavirus pandemic, Andrew co-founded Pandemic Patients and currently serves as the President of the organization. Alongside his work with Pandemic Patients, Andrew also helps long COVID patients access disability benefits and safety net resources while working to enforce their rights if they are the victim of disability discrimination in the workplace.

Severe COVID-19 infections increase the risk of cardiac arrest, death, diabetes, heart failure, pulmonary embolism, and stroke. COVID-19 also increases the risk of developing myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia.

“Long COVID: Major Findings, Mechanisms, and Recommendations,” Nature Reviews Microbiology, January 13, 2023, https://doi.org/10.1038/s41579-022-00846-2.

“Reinfection further increases risks of death, hospitalization and sequelae in multiple organ systems in the acute and postacute phase… The risks were evident regardless of vaccination status… Compared to noninfected controls, cumulative risks and burdens of repeat infection increased according to the number of infections.”

“Acute and Postacute Sequelae Associated with SARS-CoV-2 Reinfection,” Nature Medicine, November 10, 2022, https://doi.org/10.1038/s41591-022-02051-3.

Vaccination before infection with COVID-19 provides only partial protection in the post-acute phase of the disease: vaccinated people with COVID-19 infection have a 15% lower risk of developing long COVID symptoms compared to unvaccinated people.

“Long COVID After Breakthrough SARS-CoV-2 Infection,” Nature Medicine, May 25, 2022, https://doi.org/10.1038/s41591-022-01840-0.

David Cutler of Harvard University estimates that the total cost of long COVID is $3.7 trillion, which represents roughly $11,000 per capita or 17% of the 2019 GDP of the United States. These costs represent lost quality of life, reduced earnings, and increased medical spending.

“The enormity of these costs implies that policies to address long COVID are urgently needed. With costs this high, virtually any amount spent on long COVID detection, treatment, and control would result in benefits far above what it costs.”

“The Economic Cost of Long COVID: An Update,” David M. Cutler, Harvard University, July 22, 2022, https://scholar.harvard.edu/files/cutler/files/long_covid_update_7-22.pdf.

An estimated 2-4 million Americans have left the workforce due to long COVID. This translates to $168-230 billion in lost wages annually.

“New Data Shows Long COVID is Keeping as Many as 4 Million People Out of Work,” The Brookings Institution, August 24, 2022, https://www.brookings.edu/research/new-data-shows-long-covid-is-keeping-as-many-as-4-million-people-out-of-work/.

“Claims associated with long COVID are rising for disability insurance, workers compensation, and group health insurance. Those higher claims could increase costs for insurers and eventually, employers.”

“What are the Implications of Long COVID for Employment and Health Coverage?” Kaiser Family Foundation, August 1, 2022, https://www.kff.org/policy-watch/what-are-the-implications-of-long-covid-for-employment-and-health-coverage/.

According to the most recent data collected by the U.S. Census Bureau, over 38 million Americans have had a prior COVID-19 infection with symptoms lasting over 3 months.

“Household Pulse Survey: Week 56 (March 29-April 10, 2023),” U.S. Census Bureau, April 19, 2023,  https://www.census.gov/data-tools/demo/hhp/#/?measures=LONGCOVID_1&periodSelector=56.

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So, welcome, my name is Andrew Wylam.
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This event is “Patient Perspectives on Long COVID,” and we have hosted this event in coordination with
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Senator Kaine’s office and we are very grateful for his office providing us with the opportunity to host this important event.
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We hope you all enjoy your food. We do appreciate it if you will wear a mask when you are done eating. Several of our panelists have long COVID and they have risked reinfection to speak with you all today. Please respect their health by wearing a mask when you are done eating.
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I also want to just thank – in the room we have Sam Norpel and Kate Whitley. These are two people who have been affected by long COVID who are so, so passionate about this issue.
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They have worked so hard to bring this event to you today, so I wanted to thank them specifically for their help with that.
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Our speakers today: we’ll have Gina Assaf and Michael Sieverts.
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They will discuss the clinical characteristics of long covid and they will talk about research from the
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patient-led perspective. Gina Assaf is a long COVID
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patient advocate who has made significant contributions to the field of patient-led research for long COVID.
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She is the co-founder and co-lead of Patient-Led Research Collaborative, which is a global organization whose mission
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is to facilitate patient-led Research into long COVID while following rigorous research methodology.
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She is also a digital design researcher, consultant, and strategist for the government and Global development sector.
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Michael Sieverts has been living with the disabling symptoms of long COVID since his acute infection in March 2020.
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As a patient and advocate, he works with the patient-led research collaborative the Long COVID Alliance, the Network for
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Long-COVID Justice and ME Action. He has a background in science and technology
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policy and over the course of an almost 40-year career in public service he has
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worked for the Congressional Budget Office and the National Science Foundation.
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Next, we’ll have Liza Fisher and Charonda Johnson tell their personal stories about long covered and the challenges
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they have faced as patients. Liza Fisher is a national health care advocate and yoga teacher who is
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committed to providing education around long COVID and associated conditions. After being hospitalized for months and
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becoming disabled by long COVID, Liza began working with advocacy, research, and policy. She has co-authored research
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Manuscripts, been a patient representative or NIH’s RECOVER initiative, and she has testified before Congress. She also
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serves on the Long COVID Alliance’s executive committee. Charonda Johnson is the Strategic
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Partnerships Manager for COVID Survivors for Change. Following her career in the U.S Air Force, Charonda began working
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with military families who were greeting the loss of the family member. After losing her father to COVID-19,
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Charonda became involved with local efforts in Delaware to create a memorial for COVID-19 and ensure that workers
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have access to paid family and medical leave. And, finally, I will wrap up the presentation. I am Andrew Wylam. I am a
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lawyer who specializes in health, and employment, and disability law. I am the co-founder and President of Pandemic Patients.
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Alongside my work with the organization, I also help patients access to critical resources, safety net
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Benefits, and I help them enforce their rights when they become the victim of disability
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discrimination in the workplace. So with that I will turn it over to Gina
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to start a discussion about research, thank you. Thank you, Andrew. Hello, everyone, I am Gina Assaf.
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Along with my colleague, Michael Sieverts, will be presenting on behalf of Patient-Led Research Collaborative, on
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Long COVID research from a patient-led perspective. First off thank you everyone
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for being here today in-person remotely. I hope
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others get to listen to this. First off, a little bit about myself. I live in DC. I caught COVID in
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March of 2020, and never got fully better, and I’ve been suffering from long COVID for the past three years. I also
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have a sister who is severely disabled and bedridden and not able to work anymore because of work anymore because of long COVID.
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I come here to present as a researcher giving you the facts and the data but also urging people to listen as a
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patient who has a lived experience of long COVID and as someone with loved ones who are suffering from long COVID.
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I have a background in computer science and work in tech design and research, but I’ve devoted a lot of my
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time over the past three years with my other colleagues who also have long COVID to help define research and
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advocate for long COVID research, as part of the Patient-Led Research Collaborative.
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We’re three years into the pandemic. There are 19 million people in the US with long COVID. At least.
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There’s at least 65 million worldwide. Again, at least.
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There are long waiting lists for care, medical gaslighting, and dismissal many of us have gone through.
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There is lack of treatments and knowledge, and many have lost their job and their income, leading to a
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financial crisis for many of them. It’s affecting everyone across all ages,
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Genders, races, and ethnicities across the country. And socioeconomic backgrounds.
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Post-viral illnesses aren’t new, so some of us wonder how did we get here?
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Who is Patient-Led Research Collaborative? The group I’m presenting on behalf and I’m the co-founder of the
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group and help lead it with a few others. Were a group of patient researchers and Advocates working together since April
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of 2020, simply because we had to. We got together in support groups when
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nobody knew anything about long COVID and were suffering from early on without answers or any information. Our group is
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Interdisciplinary, across sciences, tech, policy, media, and we’ve done a lot of
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work over the past three years and continue to do so. We’ve co-authored several scientific publications
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as a patient-led team. We also co-authored within institutions such as the WHO, Yale, Scripps, etc.
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As I mentioned before, we were the first to publish the research in April of 2020
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and have continued to put out papers such as the ground breaking paper at the end of 2020 which had participants in over 80
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countries and 8K participants. We were more recently awarded $5
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million for a patient-led panel out group facilitated in addition to our research.
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We have informed medical definitions, guidelines, and help inform policy and funding for
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Long COVID. So what is long COVID? You may have heard about it here I’m referencing the
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working definition put together by HHS and is now actually being examined over the past few days by the National
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Academies. There are other definitions, by using the CDC’s, the WHO, and I have
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this one up. And here it’s defined as the signs, symptoms and
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conditions the continue or develop after the initial COVID-19 infection. They are
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present four or more weeks after the initial phase. Many of us, as you know, there’s three years still suffering.
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And it’s multi-systemic. It may present in a relapsing or remitting pattern,
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and progression or worsening over time. It has the possibility of severe and
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life-threatening events even months or years after the infection. It’s not one condition, it’s actually potentially
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overlapping entities with different biological causes and different types of
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risk factors and outcomes. And so on the order of 10 to 20 percent of
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people who actually contract COVID will experience long COVID. It spans all
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organ systems and causes significant impacts of people’s lives. We know in the US there are at least 98
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million cases of people who caught COVID, potentially much higher, and this
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translates to at least 19 million people experiencing long COVID. This has proven that that long COVID,
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that the pandemic, is of mass disabling event. A fact which will be seen for decades.
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Here are some of the diagnoses or comorbidities long COVID patients are getting.
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Some of these are common with post-infection illnesses, which are neuro-immune related such as ME/CFS, myalgic encephalomyelitis
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or chronic fatigue syndrome and this dysautonomia, small fiber neuropathy, etc.
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And some are more organ damage related, such as heart disease or kidney diseases, etc.
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There’s a lot of illnesses, and there’s many more that we potentially don’t even know about. These are serious
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illnesses that many are suffering from one or many of these.
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Since we’re covering the research aspects of long COVID, I want to give an overview of the research landscape and
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call out some significant mentions. Starting from your left over here
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patients were forced to conduct research, as I have mentioned. Our group released a study early inn April 2020 and ever since
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then patients have been conducting significant research. A recent example is
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the paper and the Nature review where my colleagues, with Scripps Institute, put
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out an overview of the major findings and mechanisms and recommendations. I urge you all to look through them. It’s very comprehensive.
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We also have prevalence studies giving the
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numbers I referenced earlier. We have a large national ones from the CDC pulse survey and the ONS from the UK.
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Also, universities such as GW release numbers that are showing even higher
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prevalence of long COVID in patients in the student population. Lastly, on this slide, I want to note
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there have been quite a few institutions and universities leading on biomedical research such as Yale with Dr. Akiko, PolyBio with Dr. Amy Proal, and Mount Sinai with Dr. Putrino.
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They are looking at the
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underlying biological causes in biomarkers showing potentially immune
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Dysfunction, abnormal coagulation, and microclots in these patients.
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Of course I need to mention here the NIH funding, which patients were very grateful to see after we had advocated
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for this funding. This happened in early 2020. This was a great start and we have
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some results from it. There are few issues with it related to the pace and other complaints from patients
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That my colleague will talk a little bit more about. We’re still hoping for more of this
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scale of funding but with more impact and faster to help patients.
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I want to share with you all a few major highlights from the research. As I mentioned it impacts all parts
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of the body. There have been hundreds of biomedical findings documented showing that patients are experiencing symptoms
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across multiple organ systems. It’s a complex, heterogeneous, condition.
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And there are many sub-phenotypes, including organ damage, and post-infection triggered illness.
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So the implications for patient care are dependent on those kind of issues.
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and half of the cases are likely to be a highly disabling illness that have no
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treatment or cure, such as ME/CFS and dysautonomia.
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Symptoms are lasting for years, many now or chronically they ill, and it’s
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expected for the lifelong. The pathology and biomedical explanation for the long-COVID include viral
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Persistence, microclots, abnormal coagulation and immune dysfunction.
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Initially from the research, we know that 10 to 30 percent of non-hospitalized cases,
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these are folks who are actually had a mild or moderate case of COVID, ended up
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with long COVID. Including 10 to 12 percent of vaccinated cases. 75 to 90 percent of long-COVID cases
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happen with a mild acute inflection. Most diagnoses are for people between
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the ages of 35 to 50 years old, but all ages are at-risk, including children.
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Vaccine and prior infection is not protecting people completely.
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Reinfections are making long COVID worse, and it’s triggering long COVID for previously evaded infection.
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Lastly, 67.5 percent have had their work hours impacted. Some are out of jobs, do not
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work completely due to long COVID. This is contributing to the documented labor shortages. As you can see here we
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have a screenshot of the Brookings report that shows that long COVID is keeping as many as four million people
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out of work. Lastly, before I hand it on to my
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Colleague, I want to kind of talk through a few of the issues we see in Long COVID research. While we’ve seen good
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Research, we also have some issues in research or problematic areas in this space.
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I’m not going to go through all of these, you can read through them, but I want to highlight a few. These often happen
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when we are selecting the patient population, or in the research methodology.
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Some of it is related to not looking at exist existing infectious-associated illness research such as ME/CFS and dysautonomia.
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And not addressing relevant symptoms, or accounting for post-exertional malaise, which you’ll hear about a little bit more.
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And we’re not conducting the right tests, looking at standard tests are not
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catching a lot of the issues that long COVID patients are seeing.
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And we’re looking at broad questionnaires. A lot of the questionnaires that come out tend to look at palpitations and fatigue under
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anxiety and depression while these are symptoms that come with ME/CFS or dysautonomia and POTS.
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One thing you’re also seeing in the research is we’re only looking at hospitalized patients, while we, as I
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mentioned earlier, a lot of the long COVID patients are coming from the mild cases, which may be very different.
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Now we know a control group who never had COVID is very hard,
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It’s actually almost impossible, because we think mostly everybody had COVID at least once, and so this is leading to the
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biases and machine learning and in the EHR data, which is problematic. Also,
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it’s not accessible so like I mentioned earlier, many patients are bedbound, and have a hard time actually
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even getting to studies. And then testing harmful methods which a lot of my colleagues talk a
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little bit more about that. A lot of these can be summed up because patients are not involved in the in the research process
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as partners and come as an afterthought. Thank you very much and I’m handing it off to my colleague.
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Thank you Gina. Thank you all for joining us I am Michael Sieverts.
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I just need to start with a quick disclaimer, I still work part-time
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for the federal government for the National Science Foundation so I need to emphasize that I’m here today strictly in a personal capacity and nothing I say is
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should be seen as associated with the National Science Foundation. But I’m starting with this
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survey result that Andrew shared with us. This is a survey conducted by Pandemic Patients. On the horizontal axis are
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Responses. A total of 250 people questioned about the severity of their symptoms. And the vertical axis is
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symptoms and symptom clusters. Lots of data on here, lots of results, I’m just going to call attention to
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a couple of lines. If you go up about six or seven lines up from the bottom, you see two red bars
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that go one goes halfway across and the other goes almost halfway across
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The one that goes halfway across is severe fatigue. Gina mentioned ME/CFS
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that’s the driver of it, that’s what we’re seeing, it’s what I’ve been dealing with for three years.
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Right next to it is exertion intolerance. Again, related thing, we have our bodies when
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you have ME/CFS you overreact to any kind of exertion and you end up finding yourself in a
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crash that can leave you bedridden for several days.
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Long COVID and ME/CFS is an important
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Connection. I’ve got a headline here from an article from the Atlantic by Ed Yong
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and won the Pulitzer Prize a couple years ago for his reporting on the pandemic and this headline you know says
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After being a neglected disease for decades, long COVID has finally increased the population of patients
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with this condition that it’s getting attention. As Gina mentioned a variety of
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Infections, these are post-infection illnesses, can come from a variety of infection. SARS-CoV-2 is no different.
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In many cases, like my case of ME/CFS, my case of long COVID is basically ME/CFS by
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another name. I have a dual diagnosis of that. Past studies from past viral
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Infections, same documented uh incidents ranging 5 percent
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20-25 percent associated with EBV, that’s mononucleosis.
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the original SARS virus, other viral infections lead people with ME/CFS.
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And most notably and one of the reasons ME/CFS is in a
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category of diseases that have been neglected and underfunded for years and a common
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characteristic of those diseases is that they predominantly affect women.
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That gets to some of the concerns we’ve raised about some
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of the work NIH has been doing. NIH will soon be starting a number of
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clinical trials. They’ve released information so we know that one of them is going to be on exercise therapies and
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as this headline and the sublines from nature, it did raise alarms of the patient community because
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there’s a lot of research that says patients with ME/CFS
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get worse when they’re put in exercise trials.
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There’s a sentence here in one of the quotes I’ve got, “patients told to exercise by their doctors later dropped out of studies
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or treatment regimens citing worsening symptoms.” So the doctor will say
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“well I don’t know what happened to that person but these other people did fine.” Well, the patients who drop out, that’s data that disappears. And even the
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CDC guidelines at the bottom of this screen here, notes that patients with ME/CFS do not
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tolerate exercise routines. So, again, we have raised this concern with NIH, they have heard us, they’re modifying the protocol for
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those studies, but it was it has been very concerning to see that this type of
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study is still getting used in this arena of post-infection illnesses.
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The issue with exercise therapy is one example of how unprepared the
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medical community is for long COVID. Health care providers are unfamiliar with long COVID and its associated
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conditions. This data is from a report that was released in March by the Beaumont
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Foundation. They’re based in Bethesda, and they are very focused on the patient experience.
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The results of the survey: more than three in four providers, 78 percent, think
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long COVID is a problem, but only seven percent are confident diagnosing it, and only four percent are very confident
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treating it. This challenge has deep roots. Most medical schools don’t teach anything
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about ME/CFS, thankfully there are in the FY 24
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budget requests there are some positive steps being taken by AHRQ, the agency for
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healthcare research and quality, has some has requested funding to support
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models of care, and HRSA, the health resources and services Administration has proposed a 130 million dollar
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initiative again for care for long COVID patients in their facilities.
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But when that poll found only four percent of providers are confident
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treating long COVID that’s not a surprise. There are no FDA approved treatments for ME/CFS so again
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that needs a much greater emphasis. On this slide
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that’s existing authorities FDA can put to use, I think they are putting them
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to use, like their Fast Track Authority, like their fast track review process, and they
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are also using their patient-focused drug development process where they hosted an event just a couple weeks
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ago on patient-focused drug development related to long COVID.
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One issue we’ve been bringing to their attention is they need to include people with long COVID in all trials.
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I know this may sound obvious but the way the trials are structured,
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some trials are measuring does it reduce the risk of long COVID,
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and then that gets presented as a treatment for long COVID, which is a very different thing. So, if you include
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patients with long COVID in trials, in all the trials, and we’ll be able to tease out that effect: is this reducing the
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the risk of getting long COVID or is it actually helping to manage the symptoms of long COVID?
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At the bottom of the slide is a quote from the national research action plan for long COVID that the
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administration released last August. The first few words I thought are the
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most important: build on existing programs and infrastructure. The tools are there, they they just need to be put
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to use, and put to use aggressively. This is my closing slide just to
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say I know the other panelists here will pick up on a number of these, especially the need for greater support
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for long COVID patients and caregivers, a public information campaign to increase
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Awareness, reduce stigma and address misinformation about long COVID. Again, I mentioned provider education.
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Gina and I both mentioned research that needs to be increased, sustained and also and make sure it’s informed by
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our understanding of infection-associated illnesses. Get trials and treatments moving faster.
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There’s a lot to learn from the way the HHS response landed.
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If you go back and look at the Ryan White CARE Act passed 30 years ago, it
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emphasized the importance of community-based care and treatment services and a real emphasis on
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coordination, and we encourage NIH to have much greater
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coordination across the agency and greater coordination across the government in general.
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Finally, of course, you know real the importance and the benefit of meaningful
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and robust patient engagement. Thank you, and I’m turning it over to Liza.
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Thank you. Hello, my name is Liza Fisher, a long COVID patient advocate from Houston, Texas.
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I’d like to thank everyone for taking the time to join us today to learn about long COVID.
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I’m here to make an often invisible illness visible. You will see a collection of images and
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videos from the last three years of my medical journey and I will warn you in advance not all of these are pleasant to watch.
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I got COVID in 2020 and I never got better.
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Pre-COVID I was a 36 year old, who led a very active lifestyle. I worked full-time as an
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international flight attendant. I traveled the world for a living.
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In 2019, I went to India and got my yoga certification and became a part-time yoga instructor. I even went on a run two
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days before I got sick. June 27th, I woke up struggling to
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breathe as if an elephant was sitting on my chest. I had a high fever and excruciating headache of light and sound
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Sensitivity. I knew I needed to get tested. I struggled to find testing at the time but did and if it was negative.
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However, two days later, I ended up in an ER with tachycardia while pneumonia was found on my chest. My second test was
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positive and I was diagnosed with COVID pneumonia and sent home. I struggled to find healthcare, experienced increased
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symptoms losing over 30 pounds in a month. Struggling with movement, I lost days sitting in my bathtub dealing with
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neurological effects including hallucinations. I turned online to find help to understand why I wasn’t getting
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Better, and found a community called Long Haulers. After five weeks I was admitted into a COVID ICU. I don’t remember much
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of that hospital stay, but after a week I was released and told by infections disease specialists I had this thing called post-COVID syndrome. A bunch of my
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symptoms would last, we didn’t know how long, or how severe. I was released to a COVID rehabilitation hospital but in the first
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10 days I developed tremor-like activity. It started in my right leg then moved all over my body.
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I had various forms of neuropathy, extreme pain, and loss of reflexes. I was put in a wheelchair, unable to walk, my
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speech was impaired, and I was still struggling with airflow, nutrition, and hydration.
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This was terrifying, the horror was magnified by the isolation of the experience. This was my new home, and I
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didn’t know how or when I was going to see my friends and family again. The team got to work. My doctors
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took videos and sent them to their networks. I had a company called Bioness come in and do trials with an electrical
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stimulation on my legs to try to see if we could calm down the amount of tremor that I was having.
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These trials proved somewhat beneficial, but it just wasn’t enough. While working on the multiple symptom
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Management, Dr. Felicity Mack, my PCP, connected me with the pain management specialist
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Dr Khosla, who presented the idea of implanting a spinal cord stimulator in my spine similar to a DBS,
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but no brain surgery. I called Insurance every single day trying to get them to approve a procedure that had never been done with
28:05
anyone for COVID-related symptoms, but I knew learning to what would be difficult. I didn’t know what I was in
28:11
for with health care coverage. Eventually, I was able to get the trial procedure and it was successful enough.
28:17
However, I waited for approval and complete release to go home, but this is what I look like. I just want to point out that there are
28:24
treatment options available, and just because we don’t know about them or they’re not approved by insurance, doesn’t mean people have to live like
28:30
This. My mother left the workforce early to be my caregiver for what we thought would
28:40
be a couple of months. However, it ended up being over two years.
28:41
This took a lot of medical management, getting different types of medical devices, seeking diagnosis, and dealing
28:48
with different types of adaptivity. I was able to get my first implant surgery and
28:53
begin Outpatient Therapy in December of 2020. and I obtained treatment at Sierra
28:58
Memorial Hermann one of the best brain injury clinics in the country. During this time I was also able to get
29:04
into the first Post-Care Center at UT San Antonio, run by Dr Veronica Verdusco-
29:09
Gutierrez. Dr Verdusco-Gutierrez had previously worked at Sierra Memorial
29:14
Hermann and was familiar with the cluster of my symptoms: dysautonomia, or dysfunction of the
29:21
autonomic nervous system. Here started various types of therapies,
29:26
and with really little to no understanding about long COVID and its many associated conditions, being under-
29:32
knowledged, I knew I had to become my own advocate. So I started researching all of my symptoms, diagnoses including all of
29:39
the misdiagnoses I received. I went to support advocacy groups to look for their resources and finding specialists.
29:46
During this time, my employer and my health care providers encouraged me to apply for disability. I struggled
29:53
with this concept six months into long COVID. The reality set in. Still experiencing
29:58
major deficits with my speech, my mother had to help me with this process, or I never would have managed.
30:04
This has been one of the most isolating experiences of my life. I felt myself slipping from society.
30:10
Again, I go online to find solace in knowing that I’m not alone.
30:16
I did the things, I went to therapy, I took the meds, and meditated. And yet, some
30:22
days they’re still an innate feeling that I shouldn’t be here. I want to make very clear that long
30:28
COVID is not stemming from a mental health condition. Rather, it causes and amplifies them.
30:35
The pain of living with an illness that can’t be seen takes its toll.
30:42
So what does long COVID look like? Well, brain fog, similar to a TBI. It’s my
30:49
mother keeping a bathroom schedule for me.
30:54
It’s my heart rate going into the 140’s trying to brush my teeth.
31:02
It’s the temperature and dysregulation that I experience, waking up in a pool of sweat every day.
31:09
It’s a nausea that I get from a car because it may feel like a roller coaster.
31:16
And it’s all the reactions to the various treatments that they’ve tried.
31:25
In 2021, I started to become allergic to everything.
31:31
I needed EpiPen four times in one month, and I developed what is called MCAS, or
31:38
Mast Cell Activation Syndrome. I also developed severe anemia and was
31:44
bruising and losing my hair. All of my symptoms were exacerbated by this thing called post-exertional malaise, or PEM,
31:52
which I learned about the ME/CFS world. I also learned about pacing.
32:09
Dysautonomia is another condition diagnosed after COVID.
32:15
Finding is autonomic specialist and getting all of those tests can take years without access and
32:22
Means. This leaves many helpless. I could manage my PEM better with the
32:28
results from those tests though. We also discovered that I’ve had vascular inflammation and I now have a heart valve
32:34
Disorder. I tried a therapy called external counter pulsation, or ECP. This has not
32:40
yet been authorized for COVID, however, you can see with one round of my treatment, my steps increase.
32:51
However, my heart rate was still a work in progress and I was experiencing blood pooling
32:56
that was impacting my functionality. IVs have helped, along with various
33:03
off-label medications.
33:10
Long COVID continues to affect my future health outcomes. I’ve had to check for bone density
33:15
because of the amount of steroids that I’ve had. I’ve had to check for various masses and cysts and cancer care.
33:21
Doing all of these appointments while managing to try to understand your body educate yourself, and often your
33:28
community and providers, is exhausting. I found myself taking appointments while laying on the hospital floor.
33:34
During this time my mother and I also had a presumed case of COVID,
33:39
in which she started experiencing aftereffects. I was now the caregiver to my
33:45
caregiver. This was not sustainable. I remember her staring at me starting to
33:50
feel shakiness and said I don’t like this. I felt the pain she had for the past few years watching me. The
33:57
impacts to an entire support for family systems is underestimated. Parents feel like they’re half-parents.
34:04
I’d like to talk about long cover than kids. As much as adults aren’t being heard and seen, children are
34:09
significantly more impacted. Their voices are moderated by the adults they are surrounded by. Children like Jacob whose
34:14
story, as much as mine, needs to be heard. The support we provide children and teens dealing with long COVID is
34:20
Urgent. I like to talk about disparities within the healthcare system. I’ve had several experiences of racial
34:26
microaggressions and racism. And I say this as a biracial woman knowing the privilege I still have received due to
34:32
Colorism. I got a trial by fire learning experience of the disparities within the disability community, which were
34:38
amplified because of all things related to COVID. Long COVID cost a lot. All this money I didn’t have because I was out of work.
34:48
Friends and family started a GoFundMe and I survived off of that, thinking about it, however, caused overwhelming anxiety and depression.
34:56
My company used to have a motto: “serving those who serve.” While I no longer walked down the aisles in heels flying the
35:01
friendly skies, work can look like different things. The productivity shifts can lead to feelings of worthlessness,
35:07
However. I no longer contribute, but I feel like a burden to society. It is a
35:13
situation that amplifies the emotional distress that is commonly misdiagnosed. Putting resources into getting us
35:18
medically evaluated for unbiased neuropsychological functionality is essential. These show deficits related to
35:24
COVID. Not only does this cause deficits with work, but with daily living, where forgetting to turn off the stove can turn into a potentially dangerous situation. I
35:32
needed to pace myself, utilizing my energy spoons wisely, looking for any services that would fit.
35:38
Transportation, as I had to sell my car to help pay my medical bills.
35:45
And I discovered an abilities expo that that travels around and provides resources.
35:50
Having not been able to work since 2020, medical bills started adding up, my employer canceled my insurance while I
35:56
was an inpatient, subsequently terminating me. My friends and family started a
36:03
GoFundMe, and I had to get assistance with COBRA, filing for short-term and long-term disability, SSI
36:09
navigating affordable healthcare, and Medicare. All of which, during this time did not recognize COVID, or long COVID,
36:15
as a disability. It’s imperative that we recognize this so people can get the services they need. The way I walk
36:21
through the world has changed immensely, and measure risks differently. Being immunocompromised, with the recent ending
36:27
of the Public Health Emergency response, my decision-making process has changed, impacting the spaces I feel safe in, and it has
36:34
affected my social life. This has been one of my biggest losses, and ultimately my life has changed so
36:41
Drastically, and continues to do so, all from long COVID. As I mentioned earlier, my company’s motto was “serving those who
36:48
serve,” so I’d like to thank you for taking the time to listen to my story. I hope in doing so I have served my
36:54
community well, because I truly believe with equitable and accessible support and patient-centered collaboration, we can
37:01
help the long COVID community as well as well as other post-infection illnesses. So we can stop the horrible
37:08
messages like we’ve seen. I’m just one of the many faces whose life has been changed by a long COVID, here to make an
37:14
invisible illness visible. Thank you.
37:40
Hello everyone, my name is Charonda Johnson. Today, I’m going to wear a few hats as I
37:48
share with you my personal story and my concerns. I’m going to speak to you as a combat
37:53
veteran of Iraq, a COVID bereaved, and a COVID Survivor. And finally, I’ll
38:00
speak to you as the Strategic Partnerships Manager for COVID Survivors for Change, which is a part of the COVID-19
38:05
Health and Safety Taskforce, or CHeST. Next slide.
38:12
My organization COVID Survivors for Change supports individuals directly impacted by COVID. I represent the
38:19
interests of millions of COVID-19 patients, survivors, caregivers, long
38:25
COVID survivors, and their family members nationwide. As I continue, I’ll
38:31
explain to you the work we do and the concerns we have from the care we provide to Americans suffering with
38:37
long COVID. Next slide. COVID Survivors for Change was founded
38:43
by Chris Kocher, our Executive Director, who’s actually here with me today, in
38:48
2020. We provide weekly support groups through something we like to call COVID Connections.
38:56
These meetings are led by trained mental health professionals. To-date we’ve given away more than 4,500
39:02
hours of free mental health support in English and Spanish to COVID bereaved
39:08
and individuals with long COVID across more than 40 States. We’ve also trained more than 20
39:14
survivors to be peer facilitators for COVID Connections. In addition to the mental health support
39:20
we provide and the advocacy work that we do on behalf of long haulers we also
39:26
advocate for more support for children who lost parents and caretakers to COVID. Last
39:32
Week, we were in New York advocating for a bill to be introduced that would provide
39:37
scholarships and baby bonds to children who have been orphaned by COVID, some of whom have a surviving parent living
39:44
today with long COVID. Next slide.
39:50
I’m sure my family’s long line of government service, military history, with relatives buried at multiple veterans
39:57
cemeteries, including Arlington National Cemetery, has impacted why
40:03
I look at where we go from here with such a different lens and so differently than other Americans, not to mention the
40:11
fact that, after leaving the military, I served for two U.S senators. This also gives me great respect for all of the
40:17
work that you do here. My journey with COVID began when my dad Kevin B Taylor, an Air Force retiree,
40:24
caught COVID and died in August of 2020. My dad was much healthier than I am
40:30
today when he became infected with COVID-19 and died within less than a month.
40:36
The factors that may have made him high risk for severe COVID-19 outcomes was the fact that he was 62 and an
40:43
African-American male. My experiences as a veteran are why I
40:48
view COVID so differently than many Americans and I’m going to try to explain a bit of that to you here today.
40:56
By Department of VA standards I’m 100 totally and permanently disabled.
41:05
I stopped working due to chronic fatigue that stemmed from my own military service. While serving I provided direct
41:11
intelligence support to F-117 air crews at the start of Operation Iraqi Freedom.
41:17
My Squadron was responsible for launching a first combat attack missions in Iraq.
41:23
I also deployed to Balad in 2006 while the country was plunging in the Civil War.
41:29
My service at Balad exposed me to toxic burn pits and my health began to rapidly
41:35
Deteriorate. By July of 2008, after leaving the military, I was having serious health
41:41
challenges. My body literally was falling apart every joint in my body was swollen I
41:46
could predict the weather by the pain in my body. I was hospitalized for months as I
41:53
watched VA Physicians run a plethora of tests struggling to diagnose me. At times,
41:58
doctors made me feel as if all of the symptoms that I knew I was having were
42:04
Psychosomatic, despite being on 13 different medications, and enduring constant pain.
42:10
This experience is why I have greater empathy and concern for patients who suffer from long COVID today.
42:17
We hear in our support group, many of them face similar challenges as they confront the medical community that
42:23
tells them that nothing is wrong with them, it leaves them with inadequate treatment and diagnosis as well.
42:30
This reality creates a unique challenge in terms of advocacy and support because many of them do actually
42:38
suffer from mental health challenges, like PTSD or depression, but when you’re made to feel that a physical illness is
42:45
in your head, it can deter you from seeking support physically and mentally. It leaves you
42:52
exhausted and trapped in a state of hopelessness. Because of my own experiences, I
42:57
understand it can take time from a scientific and medical community to research and develop appropriate
43:03
treatments and care. And as someone who lost a loved one to COVID, believe me I appreciate
43:10
everything that our government has done to save lives, However,
43:15
we all know we’re moving now into a different phase it’s critical for those with long COVID
43:21
that we focus on research and development for them, so they can know, and they can get better.
43:29
Next slide. I’ve digressed a bit from my story so I
43:34
want to pick up where I left off. I learned to advocate for myself through the VA system while serving as a
43:40
military and veteran constituent advocate for Senator Biden. And thankfully my health did begin to improve.
43:48
We hear the struggles that many long COVID patients face and having to advocate for themselves in our support
43:55
Group. They didn’t have the experience that I had. It’s made us keenly aware of the gaps
44:01
and provider education with regards and long COVID and the support
44:06
systems that are lacking to be in place to support them. This is something that you have the power to change.
44:14
Early in the pandemic I received letters from the VA advising to stay indoors,
44:19
because they were not sure how my body would respond to COVID because of my
44:24
exposure to toxic burn pits. You see it’s taken decades for the Veterans Administrations acknowledge
44:31
burn pit exposure through the PACT Act. My greatest concern for long COVID
44:36
patients is not knowing if our government will ever react on their behalf to provide them resources that
44:44
will help them and their families recover from job losses, health challenges, and all that they have lost
44:49
as a result of their illnesses. So as I continue to share my experience
44:55
with long COVID, I want to highlight that most of the care that I’ve received for COVID and long COVID was through the
45:02
veterans’ health system which is different than Liza here. I honestly believe that the care I
45:09
receive is actually better than what many civilians have dealt with, for a few
45:15
reasons. But, first, the VA actually
45:24
given providers a guide for treating patients with COVID. That’s something that doesn’t
45:29
exist in the civilian sector. Next, the VA has collected years of data
45:35
on chronic fatigue, which is an illness that many combat veterans like myself suffer from, which presents
45:42
similar to long COVID. This is something that I’ve been scratching my head about from the beginning of this. If the VA
45:49
has all of this data on chronic fatigue, why aren’t they sharing it with the civilian sector?
45:57
Now, to share my story with long COVID. In May of 2022 I was infected with COVID
46:03
before I was eligible to receive the most recent booster dose of the vaccine. By then I had two Pfizer doses that I’d
46:11
had allergic reactions to, and a Moderna booster which also impacted my heart
46:16
rate for a bit. Something I’ll add that I didn’t plan on sharing, is this is one of
46:21
the things that I think the VA really did get right, was rolling out ease of
46:27
access to vaccines for veterans. It was simple, I didn’t even have to ask for it
46:32
they were texting me to find out if I wanted a vaccine.
46:38
So as I mentioned by then I’ve had two Pfizer doses, I had allergic reactions. My infection with COVID, this is after
46:45
the vaccines, included severe symptoms, migraines, balance, brain issues, vision
46:52
challenges, light sensitivity, pharyngitis, extreme fatigue.
46:59
I struggled with my symptoms for months, and ultimately became unable to manage
47:04
my own transportation because of my loss of balance, which prevented me from properly handling a vehicle.
47:11
I wasn’t going to say this, but I’m going to say this, literally for three months, it took every ounce of energy,
47:18
every ounce of sheer will, to stand up and take a shower. The differences in my brain is one of
47:25
the reasons that I am literally reading what I’ve written to make sure that I don’t forget to tell you something that
47:31
I want to convey today. When I discussed my recovery from COVID with the doctors at the VA they diagnosed
47:38
me with long COVID, all of the follow-up care I received from the VA for long COVID was a result of my own
47:45
persistence and advocacy, because my doctor’s response to every symptom that
47:50
persisted was, “well you know you have a history of chronic fatigue, you know you
47:56
have long COVID, this is expected.” As a result of all of my work, I learned
48:02
from other long COVID patients to ask for physical therapy for my balance issues.
48:07
When I saw my physical therapist they told me I would be treated like someone who had a brain injury, because most of
48:14
their patients that they saw like me had brain injuries. He also recommended eye exams and I
48:20
learned that my vision has completely changed, so I needed to have new glasses that could help me with the light
48:26
sensitivity and vision issues. That’s also why my speech is written on paper because I can’t handle the glaring light.
48:34
I worked hard to build my body up, back to being able to walk five to ten
48:40
minutes without losing my breath or setting my heart rate up to 120 to 140 beats
48:45
per minute, which took me almost a year. It didn’t last long. my entire household
48:52
tested positive for COVID after taking a short vacation. My VA primary care physicians refused to
48:59
see me, they literally canceled every appointment that I had already scheduled, so I ended up needing
49:06
emergency care because I was coughing and wheezing so much that I could barely catch my breath.
49:12
I’m convinced that as a result of my exposure to burn pits, it’s left me with abnormal allergies. I’m allergic to
49:19
citrus, lemon, lime, ginger, thyme, oregano, basil, tree nuts, dogs, cats, horses,
49:24
Cockroaches, pick something. Unlike most people, because of this I cannot take many over-the-counter
49:31
medicines or simple home remedies like honey and drinking warm teas. That’s why I had to go to an ER for coughing and
49:38
wheezing, because my doctors would not see me. My care at the VA, like I said, I’m sure
49:45
I believe it really was the best that they could offer, yet they weren’t offering me any antivirals or any
49:51
Medication, despite my history of long COVID, and my healthy father’s quick death from COVID. I had to advocate, literally
49:58
beg, and insist on them giving me antivirals for other needed medications
50:04
for my care. It wasn’t until I received these medications that I finally started
50:10
to feel better. The other thing I’ll add is while I was sick I was taking care of a household of
50:17
four other people who are more sick than me, with my
50:22
previous health experience. What’s most difficult and disturbing to
50:28
process is knowing that no one in the medical community seems to consider it a
50:34
factor that I have half of my dad’s DNA when treating me for COVID, or that black
50:39
and brown Americans died at a rate that was higher, 67 percent higher, than white Americans. This alone is something that
50:47
needs further research and further consideration as it pertains to COVID and long COVID in people that look like
50:53
Me. I know my experience in comparison to Liza many others that suffer
51:00
with long COVID is actually mild and I’m very grateful for this. I also must add something that no one
51:07
discusses publicly as it pertains to COVID or long COVID: when you’ve already lost a loved one to COVID
51:15
and you experience long COVID, it hits you on a mental level much deeper. It’s
51:21
why I also urge you to fund mental health support for COVID bereaved and long COVID survivors.
51:28
Many of us deal daily with long COVID and the middle and physical health effects after.
51:35
I want to share with you some of the lessons we’ve learned in the care we provide.
51:40
Some of these I’ve already mentioned, I’m sure, but I want to make sure I spell them out. I’ll start with the fact that
51:47
many people who have long COVID must confront many challenges like inadequate
51:52
diagnosis, care, treatment, loss of employment, loss of income, loss of health,
51:58
loss of future. Long COVID patients are confronted with a medical community that tells them
52:04
there is nothing wrong with them, which leads to poor self-esteem, hopelessness helplessness, possibly
52:12
mental illness. We also know that long COVID causes inflammation in the body,
52:17
which can cause major depressive disorder. Other stresses from long COVID
52:22
include cardiopulmonary issues, anxiety, and isolation.
52:28
I’d implore you to consider what does this mean for the future of our economic status our children, or our national
52:35
defense in its entirety. The long-term effects of long COVID on
52:40
the workforce and the economy are not yet fully understood, however, it’s
52:46
clear that the condition’s impact is significant, with millions of individuals
52:52
unable to return to work or engage in activities they once enjoyed.
52:59
It’s also important to consider that many of the companies that support our military and national defense systems
53:06
employ workers who are struggling with long COVID symptoms. If we don’t support long COVID
53:12
research we risk losing skilled workers with the ability to meet our national
53:17
defense needs in the future. The consequences of ignoring long COVID research go beyond the
53:24
military and national defense industries, it also affects the broader economy and
53:29
our society at large. The Department of Defense recognized the danger of COVID-19.
53:36
The agency pointed to the highly transmissible nature of COVID as a threat
53:41
that could overwhelm our health systems and impair the operational readiness of the Armed Forces. I’d also add that
53:48
during the pandemic, I used Dover Air Force Base to figure out what was the
53:53
threat level? What precautions I should be taking? Because they were taking proper precautions to protect their
54:00
forces in response to the dangers presented by the coronavirus pandemic. The agency
54:06
issued force health protection guidance that continues to be updated regularly to reduce the spread of COVID-19
54:13
among military service members. I encourage you to consider what measures are being put in place to
54:20
assess the impact that long COVID can have on our current and future U.S
54:26
military’s operational readiness. Congress must allocate funding to
54:31
protect our national security and the military’s operational readiness as long as long as the COVID continues to
54:38
threaten the health of one in six Americans who are infected.
54:43
So here’s the bottom line. We’ve moved into a new phase and how we
54:48
approach the coronavirus pandemic, and as we do this it’s critical for our nation to invest in a thorough
54:54
understanding of long COVID and its impact on our military personnel, national defense industry, economy, and
55:02
broader society. We must not be short-sighted, or forget the lessons that
55:08
we’ve already learned through this pandemic. This is why we are urging Congress to proactively support further
55:14
long COVID research and mental health care services for those who have been impacted by COVID and long COVID. Failure
55:22
to do so can have severe consequences for our current and future national defense and economic well-being. Thank you.
55:41
Thank you Charonda. So I hope you enjoyed hearing from
55:46
patients today about their lives experiences with long COVID. What I’m
55:52
going to do is zoom out a little bit to focus a little bit on the organizational perspective we have as patient advocates.
56:00
So I introduced myself earlier, I’m Andrew Wylam, and I’d like to introduce
56:06
you now to Pandemic Patients. We are a 501(c)(3) non-profit organization. Our
56:12
mission is to relieve the harm caused by COVID-19 and Post-COVID Conditions. Our
56:17
vision is a world where people are affected by covid-19 receive the support and services that they need to live
56:24
their best lives. So we started our organization back in
56:29
May of 2021. We’re coming up on our two-year anniversary in about 11 days.
56:34
and up here on the screen is Mike Floyd. That is my husband’s father who
56:40
died in 2019. It is through the incredible generosity of his family and
56:47
his surviving wife, Charlotte Floyd, that we are able to do a lot of great work we do as
56:52
patient advocates. So I just want to thank him, his family, and Charlotte, who’s watching today.
56:58
I’d also like to thank my own family, just for being so supportive on the incredible journey we’ve been on as an organization to take on this enormous issue.
57:09
So where do we stand as patient advocates?
57:15
On the screen, you can see that we’re an intermediary between the patient population and the government.
57:21
The government does a lot of really great work on long COVID through several
57:28
agencies and we try to make sure that they are hearing the voices and perspectives of long COVID patients to
57:34
inform them as they do that work. We try to elevate common issues that we
57:41
see to policymakers to make sure that they’re aware of them and responding to them. Next slide please.
57:49
On this slide you can see there’s several agencies we’ve worked with. We’ve got HHS, they’re
57:56
responsible, of course, for the health of the nation and improving healthcare access. The NIH whose research will serve
58:02
as the foundation for treatment and cures of long COVID. The CDC who conducts population research on
58:09
Long COVID prevalence and issues recommendations for public safety. The Department of Labor who is responsible
58:16
for employee benefits and employment issues. The DOJ, they are
58:21
responsible for enforcing civil rights laws and particular the Americans with Disabilities Act, and the FDA that
58:29
approve treatments for long COVID and other conditions. Also, with the
58:36
Census, they do the Household Pulse Survey to collect information on COVID
58:41
and long COVID, and as Gina mentioned earlier, the National Academies, which, right now, is examining the working
58:47
definition of long COVID to align that across the different sectors of government.
58:53
So, in addition to what we do with the government, we also do case management ourselves. I’d like to talk to
59:00
you about what that actually looks like for us. In July of last year, we launched what we
59:06
call the Pandemic Legal Assistance Network, and we did that because people were coming to us with some very complex
59:14
legal issues that they were having a really hard time resolving, and as I mentioned earlier I’m a
59:19
lawyer, so I like to help fix those problems. But I am just one person in
59:25
a very large country and the way that the legal profession works is lawyers need to be licensed in a state to
59:31
practice law there. So that’s why we opted for a network model, where we have enlisted attorneys who agreed to work
59:38
with us to provide pro bono services to people we refer to them. So, functionally this operates by
59:45
people come to us, they give us an inquiry, for something they need help with, and we try to match them with an
59:50
attorney to give them the help that they need. So one benefit of this approach is that
59:55
we can keep our finger on the pulse of really complicated legal issues that
1:00:01
people are experiencing across the country. So I get to see every day what people are coming to help to us to get help
1:00:07
With. So on this slide I’ve got listed here some of the most
1:00:14
common legal issues that we’ve see from the patient community this includes, in no particular order,
1:00:20
disability discrimination, workplace accommodations, disability insurance,
1:00:25
Social Security, housing, workers’ compensation, unemployment compensation,
1:00:31
and FMLA. Now, we got a good audience in the room
1:00:36
I’d like any of you to raise your hands and try to tell me: what is the common theme between all of these issues?
1:00:43
I’ll give you a moment to think about it which all of these things have to do with?
1:00:50
Let’s see some guesses am I come on people. All right hearing no volunteers,
1:00:57
the issue is employment. And we see that as the biggest policy intersections of long
1:01:04
COVID right now. All of these issues have to do with a person’s relationship with their job.
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For example, because long COVID can be a disabling condition, some Americans have
1:01:15
been unable to continue working and that has a ripple effect into other areas of their life. A person may gets sick, they
1:01:23
may need to sick FMLA leave. Their symptoms may interfere with their ability to perform their job and they
1:01:29
may need accommodations from their employer to continue working. In some cases a person may become so
1:01:35
disabled that they become victim of disability discrimination by their employer,
1:01:41
in violation of federal civil rights laws. A person can get so sick from COVID-19
1:01:46
that they may need to go on a short-term or long-term disability to recover their lost income while they’re unable to work.
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Alternatively, due to occupational exposure to COVID-19, they may need to file workers’ compensation claims to recover
1:01:58
that same lost income. And if they lose their job entirely they may need to apply for unemployment compensation, and
1:02:05
if they lose their income what does that mean? They can’t pay their rent housing issues, evictions, they have landlord/tenant
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Issues. So, we see here
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the aggregate of how this really is affecting the country. People are
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leaving work, they’re reducing their hours, they’re going on disability leave and it’s a huge burden on this country.
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In July of 2022, a conservative estimate, conservative, of the total cost of long
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COVID on this country exceeds, that’s the wrong number, it should be 3.7 trillion dollars. Trillion.
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That is coming from increased medical expenses and loss of income, predominantly, and
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lost quality of life. That is enormous. Absolutely unfathomable. And what I want
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to emphasize here is that when this estimate is created, it did not consider the secondary effects
1:03:03
on employers and the workforce, including the actual cost of increased health insurance claims, disability claims, and
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unemployment compensation, claims in addition to workers’ compensation claims.
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The long-term economic impact of that is dire, and we truly don’t know that that
1:03:23
number is going to be. But we’ve got to do something about it. On August 24th
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of 2022, the study from The Brookings institution estimated that about two to four million
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American workers have gone through one of these three pathways out of the workforce.
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So, upon falling ill it was long COVID, a person may find themselves unable to
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work and reliant on scarce safety net resources to stay afloat. Our experience with our legal assistance
1:03:53
network confirms this. Countless Americans with long COVID are unable to work. They have exhausted their
1:04:00
Savings. They are out of resources and they have actually nowhere to turn. The government stimulus programs that
1:04:07
help people get through the earlier days of the pandemic are a distant memory. They’re not around anymore. They’re not helping anyone.
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Indeed, a study published in December of 2022 found that individuals who had
1:04:18
COVID-19 were 46 percent more likely to have suicidal ideation during the post-acute phase.
1:04:25
An analysis published by Reuters during the same time period found that
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Americans with long COVID were nearly twice as likely to receive a
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prescription or an antidepressant for the first time in the 90 days following
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their initial COVID-19 diagnosis. This is hurting an Americans, truly.
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So patient organizations should be able to relieve this burden, right? That’s what we’re here for, we’re sure to help.
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But we can’t do it alone. This issue is enormous, it is too big.
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It’s affecting too many people and Advocates are honestly struggling to keep up.
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Two of the largest peer support groups for long COVID patients have completely
1:05:12
shut down in the past few months because they are out of resources.
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So the patients themselves have exhausted their resources. The organizations like us that are trying to
1:05:24
do something about it, also exhausting their resources. We do not have the support from the government because
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those funds right now don’t exist. We are serving a community that is
1:05:36
grappling with widespread disability. A community whose resources are spread thin as they fight to survive, as Liza showed
1:05:43
us. They are looking to us for help and we don’t have the infrastructure to actually deliver the support that they
1:05:49
need. So what do we do about this? There’s a few things I’ve got
1:05:55
listed on the screen, a few policy suggestions we have. The first and foremost is that we need Congress to
1:06:02
commit to ongoing investment in research. We need more than just a billion dollars
1:06:09
at the NIH. This has to happen every year. We have to figure this out because all
1:06:15
of the legal issues I mentioned to you, why are they so complicated? Because we don’t have the tools to diagnose this. We
1:06:23
don’t have a test that says “this is affecting you, this is why, this is how you’re impaired, and this is what you
1:06:28
need to do about it.” We have to get there. All these other costs will be aided by
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That. So, also we suggest that the government should invest in community-based
1:06:40
organizations like ours who are doing this extremely important case management work.
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There’s a huge tide of need out there and we’re trying to do something about it, we really are, but we need help.
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Particularly, we call on Congress to invest in programs to deliver legal support specifically to patients.
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The need for this is very great and we are one of the only organizations that exists right now that
1:07:09
is taking on this issue from this angle. In a lot of situations we are the only people people have left to go to when
1:07:16
they need help. They can’t afford a lawyer, it’s beyond their means. And if
1:07:21
they don’t get one they’re not going to get the access they need to the resources that they need to get back on
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Track. So we also recommend that in Congress should engage with employers to help
1:07:34
educate them about their responsibilities under the law, particularly about
1:07:39
their responsibilities under the Americans with Disabilities Act. That is a federal civil rights law that
1:07:46
protects people with disabilities and because long COVID can be considered a disability, we think that some of these
1:07:52
issues will be less prevalent if employers will be partnered with so
1:07:58
that we can help educate them about that, So, finally we think Congress
1:08:04
should increase access to safety net resources like SSDI. Right now,
1:08:11
for someone who has gone through every other resource they possibly can to get some income support when they’re
1:08:16
Disabled, they turn to SSDI and there is about a 6 to 12 month wait
1:08:23
just for a claims adjudication from the agency. That is an issue that will be
1:08:28
fixed hopefully by more funding for the agency and a streamlined application
1:08:34
process for people trying to obtain those benefits. There are also mandatory
1:08:40
six-month waits before someone can receive benefits after they’re deemed eligible that’s
1:08:46
something that is completely unnecessary as well. There’s a 24-month mandatory waiting period for someone to obtain
1:08:52
Medicare benefits after they obtain SSDI. That, also, we need to get rid of. When
1:08:58
someone gets SSDI, they’re at a true bottom, and they need not only access to
1:09:03
income support, but health coverage as well.
1:09:08
So, as Patient Advocates I hope you can tell that we try to center the lived
1:09:14
experiences of patients in the work that we do. And so when we announced that we were
1:09:20
having our event today we shared with the community the
1:09:25
opportunity to send us a message that we could deliver to you on their behalf.
1:09:31
That was a one question survey that asked for nothing but “what would you say to members of
1:09:37
Congress about long COVID?” In this picture, this is a word cloud
1:09:44
that combines all of those responses that we received. Obviously, we can’t go through every
1:09:50
single word here right now but the same themes keep coming up over and over again.
1:09:56
Patients are concerned about their financial security. They are disabled. They need treatment.
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They are suffering. Their quality of life is declining. Their symptoms have lasted
1:10:09
for months or years. Can you imagine this for years?
1:10:15
They’re asking you for help. Now I’d like to share some of those
1:10:20
messages with you directly, and then I’ll close and we’ll take some questions. One person wrote and said: “before COVID, I
1:10:29
was healthy, active, employed full-time, and a caretaker for my two young kids.
1:10:35
After COVID, I can’t work, and I can’t take care of my basic needs on my own.
1:10:41
I have such extreme fatigue that I am in bed most of the day. Any type of activity, emotional,
1:10:48
physical, or cognitive, exhausts me, and requires full rest afterward. Our health
1:10:54
care and disability and insurance systems are not built for people with long COVID, causing emotional distress,
1:11:00
delays in care, and financial ruin. This only makes the symptoms of this
1:11:06
horrible illness worse.” Another person wrote, and said “long COVID
1:11:12
has affected my life so much. I have developed so many new health issues that affect my daily life. I am no longer able
1:11:20
to work and I am trying to get all my medical records in order to file for disability.
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As a recently widowed mother at 41, I fear my daughter and I will be homeless
1:11:30
before any financial help arrives.” And finally, I hope this hits home for
1:11:37
some of you, “when I contracted a mild COVID case in June 2022 I was a healthy and vaccinated
1:11:44
middle-aged lawyer and former Senate intern. Since then, I’ve been disabled housebound
1:11:51
unable to work unable to watch most television or use zoom, unable to
1:11:57
socialize, and only barely able to handle my most basic physical needs with the help of my teenage daughter.
1:12:03
My life and career have been destroyed and on facing financial ruin. I was turned down for short-term and
1:12:11
long-term disability insurance. I was denied workers’ compensation even though I contracted covet on a flight for a
1:12:17
business trip. Now that I’ve been terminated from my job, I’m applying for unemployment at SSDI, but I don’t know if
1:12:24
I will receive those benefits. I’m in my 40’s but I feel like I suddenly turned 80 years old.”
1:12:30
So that concludes our presentation we
1:12:36
will open it up for questions now. We’ve got a mic here if you have a
1:12:41
question just raise your hand we’ll come get you.
1:12:47
If there are none, that is okay.
1:12:54
Okay, seeing no questions, you know we’ll be around and we’ll be able to
1:13:00
talk to you if you’d like. As we conclude I want to thank you all for coming out today and listening to
1:13:06
these presentations. Again, I’d like to thank Senator Kane’s office for helping us coordinate this event. I’d like to
1:13:11
again thank Kate and Sam who are here and helped us prepare these materials that we gave to you today.
1:13:18
Please take more of these catered lunches, please take them to your co-workers so they don’t go to waste.
1:13:23
And I hope you picked up a copy of our leave behind from Mark as you came in. There was also a copy of my business
1:13:29
card if you’d like that to take with you as well. So thank you so much and I wish you a great week.