Post by Nadica (She/Her) on Nov 4, 2024 21:31:29 GMT
Advocates say the Harris campaign must do more to address long COVID - Published Nov 4, 2024
by Laura Weiss
For over four years, long COVID-19 patients and advocates have been frustrated by a lack of public acknowledgment of their condition and the ongoing long-term impact of COVID-19
“I was diagnosed with long COVID, which will disable me for the rest of my life.”
These were the words of Martha, addressed to Vice President and Democratic presidential nominee Kamala Harris at a town hall event this month hosted by Univision for Latinx voters. Martha explained that after her illness left her unable to work, she applied for disability benefits. Yet three years later, she still has not received a response, leaving her homeless, broke, and unable to get medical treatment.
“I lost everything,” she said in an urgent, strained whisper. “How will you help the disabled people?”
Martha’s question was notable not just in its denunciation of the brokenness of the disability benefits system, but also because it was one of the first mentions of long COVID on the campaign trail. Though the Biden-Harris administration has claimed that “COVID no longer runs our lives,” some 17 million Americans have been disabled by long-term symptoms of COVID-19, with millions out of the workforce and an approximate cost of $1 trillion to the global economy. This condition disproportionately affects Latinx people, women, the LGBTQIA+ community, and people with disabilities.
Harris responded to Martha by pointing to her efforts to include long COVID as a disability under the Americans with Disabilities Act (ADA) and plans to relieve medical debt. However, ADA designation does not impact benefits determinations, and the challenges to accessing care for this and other complex chronic illnesses go far beyond paying debts.
For over four years, long COVID patients and advocates have been frustrated by a lack of public acknowledgment of their condition, the long-term impact of COVID-19 and false claims that the pandemic is over. According to Meighan Stone, the executive director of the Long Covid Campaign and a long COVID sufferer herself, the town hall created an opening for advocates to rally for more funding and attention on this urgent issue in an upcoming administration.
On the heels of the event, the Long Covid Campaign, which is nonpartisan, connected with the Harris campaign’s newly appointed Disability Engagement Director, Anastasia Somoza, last week.
“She was incredibly responsive,” Stone said about the preliminary conversation, though time will tell whether policy shifts will follow should the campaign transition into power come January. The Trump campaign has not responded to her outreach efforts.
While this and other recent developments, such as a National Institutes of Health (NIH) conference last month on improving long COVID research and bills in Congress demanding a long COVID “moonshot,” to get $1 billion minimum in annual funding are promising, both the Harris and Trump campaigns have been quiet on the subject. Advocates agree that the next president must do better to acknowledge and address the urgency of long COVID and prevent the crisis from further growing.
“The lack of deep and direct involvement from the Harris campaign and [Biden] administration regarding long COVID is incredibly frustrating,” said Cynthia Adinig, a long COVID patient and co-founder of the BIPOC Equity Agency, based in Virginia. “As a patient, voter, and advocate, it’s disheartening to see the silence, especially when long COVID disproportionately affects marginalized communities.”
Dr. Lucky Tran, a science communicator based in New York, said that political campaigns need to take the impact of COVID-19 and long COVID more seriously and develop clear policies to prevent it.
“People see COVID as a poisonous electoral issue,” Tran said, adding that there are ways to make the topic more politically appealing. The burden of long COVID connects to popular issues like health care access, housing, guaranteed sick leave, and public benefits, which campaigns could leverage.
A new administration could also go far in supporting improved research and treatment efforts for long Covid. The RECOVER initiative for long COVID, launched in 2021 under the NIH, has faced widespread criticism for its slowness, inefficiency, and lack of focus on clinical trials and treatments.
“We’re more than four years and $1.15 billion into the COVID pandemic, and Americans living with long COVID, and it’s still a DIY project for patients,” Stone said. There are still zero FDA-approved treatments for long COVID.
Last month’s RECOVER-TLC (Treat Long COVID) conference at NIH focused on the additional $515 million allocated to the RECOVER initiative. NIH Director Dr. Monica M. Bertagnolli, who was appointed last year, led the conference alongside Dr. Jeanne Marazzo. Marazzo is a leader in HIV/AIDs research and the new head of the National Institute for Allergic and Infectious Diseases (NIAID), the institute where RECOVER will now be housed. Stone said these appointments mark a positive “shift” for long Covid progress.
Tran noted that under a Trump administration, both appointments would likely be reversed, and funding for the initiative would be further slashed.
“The Trump administration has shown a hostility to funding that sort of biomedical research,” he said.
During the conference, Bertagnolli and Marazzo reaffirmed the seriousness of the long COVID crisis, their understanding of patient frustrations, and their commitment to addressing the problem head-on. Bertagnolli discussed the progress made thus far but admitted that it is time for clinical trials of treatments to get further underway. She committed to a “true partnership” with patients to “align around a common agenda…and really move this forward.”
The panels featured testimony by patient advocates, doctors, and researchers across disciplines. These experts offered perspectives on how to best identify trial participants, the importance of inclusivity and collaboration with patients in running trials, including pediatric trials, and the regulatory processes for getting treatments approved and in the hands of long COVID sufferers as quickly as possible.
“The meeting was extremely positive and productive and collaborative, and a real change in approach,” said Stone. But she stressed that any solution to this crisis must be inclusive. “That has to include people on Medicaid, on Medicare, hourly wage workers that don’t have health insurance, that is going to let them get access to specialists who are going to write prescriptions off-label,” she said, as well as communities of color.
Another challenge for these trials is to ensure that long COVID patients can safely participate without risking COVID reinfection. At the NIH meetings, few agency officials present wore masks, though the majority of patients did. On Oct. 29, the NIH announced it would be reinstating mask requirements for all clinical trials.
Still, Lisa McCorkell, the co-founder of the Patient Led Research Collaborative and a long COVID patient based in Oakland, California, who spoke at the event via videoconference, told Prism that the meetings left her “cautiously optimistic.”
Adinig echoed this sentiment but added that there is skepticism about the NIH in the chronic illness community.
“We’ve heard similar commitments before, and the follow-through has often been slow,” she said. “The advocacy community will need to keep pushing to make sure this momentum doesn’t fade.”
But both McCorkell and Stone spoke to the importance of securing more funding for long COVID research. Thus far, it has all come through annual presidential appropriations, making it vulnerable to changing priorities each year. “We need sustained, comprehensive, significant funding year over year,” said Stone.
Such funding could come from the Long COVID Moonshot, also brought about through dogged advocacy by groups such as the Patient Led Research Collaborative. Sen. Bernie Sanders, the Chairperson of the Senate Committee on Health, Education, Labor and Pensions (HELP), proposed legislation in the Senate in August that would guarantee $1 billion per year in funding for long COVID research. Reps. Ilhan Omar and Ayanna Pressley introduced similar legislation in the House last month with a handful of cosigners. However, it currently lacks bipartisan support.
But as McCorkell said, “Even if those conversations don’t result in a vote for this specific bill, it can go a long way in raising awareness for long COVID.” Stone added that White House support for efforts like Moonshot could go a long way.
Tran also pointed to the importance of the White House promoting ongoing COVID-19 prevention efforts and added that such efforts don’t need to be “all or nothing.” The administration could encourage mask-wearing, staying home when sick, and testing. It could also raise awareness about long COVID and commit to developing better vaccines and tests, and making them widely available, and improving indoor air quality. The government also needs to be much clearer about their public health guidance, especially that coming from the Centers for Disease Control (CDC), and publicly denounce mask bans, he added.
Meanwhile, Tran warned, another Trump presidency would likely cut healthcare access, as well as try to repeal the Affordable Care Act (ACA), deregulate public health institutions, and weaken protections for disabled and other marginalized groups. Not to mention the impacts of banning abortion and ignoring climate goals, increasing the risk of future pandemics.
“We need to stop…thinking COVID is just a niche issue,” he said. “All of these issues are connected, no matter what you care about.”
by Laura Weiss
For over four years, long COVID-19 patients and advocates have been frustrated by a lack of public acknowledgment of their condition and the ongoing long-term impact of COVID-19
“I was diagnosed with long COVID, which will disable me for the rest of my life.”
These were the words of Martha, addressed to Vice President and Democratic presidential nominee Kamala Harris at a town hall event this month hosted by Univision for Latinx voters. Martha explained that after her illness left her unable to work, she applied for disability benefits. Yet three years later, she still has not received a response, leaving her homeless, broke, and unable to get medical treatment.
“I lost everything,” she said in an urgent, strained whisper. “How will you help the disabled people?”
Martha’s question was notable not just in its denunciation of the brokenness of the disability benefits system, but also because it was one of the first mentions of long COVID on the campaign trail. Though the Biden-Harris administration has claimed that “COVID no longer runs our lives,” some 17 million Americans have been disabled by long-term symptoms of COVID-19, with millions out of the workforce and an approximate cost of $1 trillion to the global economy. This condition disproportionately affects Latinx people, women, the LGBTQIA+ community, and people with disabilities.
Harris responded to Martha by pointing to her efforts to include long COVID as a disability under the Americans with Disabilities Act (ADA) and plans to relieve medical debt. However, ADA designation does not impact benefits determinations, and the challenges to accessing care for this and other complex chronic illnesses go far beyond paying debts.
For over four years, long COVID patients and advocates have been frustrated by a lack of public acknowledgment of their condition, the long-term impact of COVID-19 and false claims that the pandemic is over. According to Meighan Stone, the executive director of the Long Covid Campaign and a long COVID sufferer herself, the town hall created an opening for advocates to rally for more funding and attention on this urgent issue in an upcoming administration.
On the heels of the event, the Long Covid Campaign, which is nonpartisan, connected with the Harris campaign’s newly appointed Disability Engagement Director, Anastasia Somoza, last week.
“She was incredibly responsive,” Stone said about the preliminary conversation, though time will tell whether policy shifts will follow should the campaign transition into power come January. The Trump campaign has not responded to her outreach efforts.
While this and other recent developments, such as a National Institutes of Health (NIH) conference last month on improving long COVID research and bills in Congress demanding a long COVID “moonshot,” to get $1 billion minimum in annual funding are promising, both the Harris and Trump campaigns have been quiet on the subject. Advocates agree that the next president must do better to acknowledge and address the urgency of long COVID and prevent the crisis from further growing.
“The lack of deep and direct involvement from the Harris campaign and [Biden] administration regarding long COVID is incredibly frustrating,” said Cynthia Adinig, a long COVID patient and co-founder of the BIPOC Equity Agency, based in Virginia. “As a patient, voter, and advocate, it’s disheartening to see the silence, especially when long COVID disproportionately affects marginalized communities.”
Dr. Lucky Tran, a science communicator based in New York, said that political campaigns need to take the impact of COVID-19 and long COVID more seriously and develop clear policies to prevent it.
“People see COVID as a poisonous electoral issue,” Tran said, adding that there are ways to make the topic more politically appealing. The burden of long COVID connects to popular issues like health care access, housing, guaranteed sick leave, and public benefits, which campaigns could leverage.
A new administration could also go far in supporting improved research and treatment efforts for long Covid. The RECOVER initiative for long COVID, launched in 2021 under the NIH, has faced widespread criticism for its slowness, inefficiency, and lack of focus on clinical trials and treatments.
“We’re more than four years and $1.15 billion into the COVID pandemic, and Americans living with long COVID, and it’s still a DIY project for patients,” Stone said. There are still zero FDA-approved treatments for long COVID.
Last month’s RECOVER-TLC (Treat Long COVID) conference at NIH focused on the additional $515 million allocated to the RECOVER initiative. NIH Director Dr. Monica M. Bertagnolli, who was appointed last year, led the conference alongside Dr. Jeanne Marazzo. Marazzo is a leader in HIV/AIDs research and the new head of the National Institute for Allergic and Infectious Diseases (NIAID), the institute where RECOVER will now be housed. Stone said these appointments mark a positive “shift” for long Covid progress.
Tran noted that under a Trump administration, both appointments would likely be reversed, and funding for the initiative would be further slashed.
“The Trump administration has shown a hostility to funding that sort of biomedical research,” he said.
During the conference, Bertagnolli and Marazzo reaffirmed the seriousness of the long COVID crisis, their understanding of patient frustrations, and their commitment to addressing the problem head-on. Bertagnolli discussed the progress made thus far but admitted that it is time for clinical trials of treatments to get further underway. She committed to a “true partnership” with patients to “align around a common agenda…and really move this forward.”
The panels featured testimony by patient advocates, doctors, and researchers across disciplines. These experts offered perspectives on how to best identify trial participants, the importance of inclusivity and collaboration with patients in running trials, including pediatric trials, and the regulatory processes for getting treatments approved and in the hands of long COVID sufferers as quickly as possible.
“The meeting was extremely positive and productive and collaborative, and a real change in approach,” said Stone. But she stressed that any solution to this crisis must be inclusive. “That has to include people on Medicaid, on Medicare, hourly wage workers that don’t have health insurance, that is going to let them get access to specialists who are going to write prescriptions off-label,” she said, as well as communities of color.
Another challenge for these trials is to ensure that long COVID patients can safely participate without risking COVID reinfection. At the NIH meetings, few agency officials present wore masks, though the majority of patients did. On Oct. 29, the NIH announced it would be reinstating mask requirements for all clinical trials.
Still, Lisa McCorkell, the co-founder of the Patient Led Research Collaborative and a long COVID patient based in Oakland, California, who spoke at the event via videoconference, told Prism that the meetings left her “cautiously optimistic.”
Adinig echoed this sentiment but added that there is skepticism about the NIH in the chronic illness community.
“We’ve heard similar commitments before, and the follow-through has often been slow,” she said. “The advocacy community will need to keep pushing to make sure this momentum doesn’t fade.”
But both McCorkell and Stone spoke to the importance of securing more funding for long COVID research. Thus far, it has all come through annual presidential appropriations, making it vulnerable to changing priorities each year. “We need sustained, comprehensive, significant funding year over year,” said Stone.
Such funding could come from the Long COVID Moonshot, also brought about through dogged advocacy by groups such as the Patient Led Research Collaborative. Sen. Bernie Sanders, the Chairperson of the Senate Committee on Health, Education, Labor and Pensions (HELP), proposed legislation in the Senate in August that would guarantee $1 billion per year in funding for long COVID research. Reps. Ilhan Omar and Ayanna Pressley introduced similar legislation in the House last month with a handful of cosigners. However, it currently lacks bipartisan support.
But as McCorkell said, “Even if those conversations don’t result in a vote for this specific bill, it can go a long way in raising awareness for long COVID.” Stone added that White House support for efforts like Moonshot could go a long way.
Tran also pointed to the importance of the White House promoting ongoing COVID-19 prevention efforts and added that such efforts don’t need to be “all or nothing.” The administration could encourage mask-wearing, staying home when sick, and testing. It could also raise awareness about long COVID and commit to developing better vaccines and tests, and making them widely available, and improving indoor air quality. The government also needs to be much clearer about their public health guidance, especially that coming from the Centers for Disease Control (CDC), and publicly denounce mask bans, he added.
Meanwhile, Tran warned, another Trump presidency would likely cut healthcare access, as well as try to repeal the Affordable Care Act (ACA), deregulate public health institutions, and weaken protections for disabled and other marginalized groups. Not to mention the impacts of banning abortion and ignoring climate goals, increasing the risk of future pandemics.
“We need to stop…thinking COVID is just a niche issue,” he said. “All of these issues are connected, no matter what you care about.”