{"id":1408,"date":"2023-01-31T00:47:42","date_gmt":"2023-01-31T00:47:42","guid":{"rendered":"https:\/\/longcovidalliance.org\/?p=1408"},"modified":"2023-05-11T16:11:39","modified_gmt":"2023-05-11T16:11:39","slug":"long-covid-sidelined-in-congress","status":"publish","type":"post","link":"https:\/\/longcovidalliance.org\/long-covid-sidelined-in-congress\/","title":{"rendered":"Long COVID Sidelined in Congress"},"content":{"rendered":"\n

With limited data and funding, advocates are pleading with lawmakers to support research and surveillance of long COVID in the new Congress. From Erin Durkin at the National Journal and featuring LCA partner Andrew Wylam of Pandemic Patients:<\/em><\/p>\n\n\n\n

Patients suffering from long-term impacts of a COVID-19 infection are still searching for answers in the new year. <\/p>\n\n\n\n

Post-COVID conditions, also known as long COVID, can encompass a wide range of symptoms such as brain fog, fatigue, and shortness of breath. <\/p>\n\n\n\n

A late 2022 report from the Centers for Disease Control and Prevention found that long COVID was a factor in the deaths of 3,544 people<\/a> from January 2020 through June 2022. Possibly up to 4 million Americans could be out of work due to the condition, totaling $230 billion in lost earnings, estimated the Brookings Institution<\/a>. <\/p>\n\n\n\n

Advocates want the new Congress to support long-COVID research and access to treatment for patients suffering from these long-term complications. <\/p>\n\n\n\n

\u201cA lot of folks are really suffering, and they\u2019re wondering whether people are paying attention to them,\u201d Sen. Tim Kaine said.<\/p>\n\n\n\n

Kaine told National Journal<\/em> Wednesday that he is still living with his own long-COVID symptom, a constant nerve-tingling. \u201cIt still feels very unusual, and three years later it hadn’t gotten worse and it hadn\u2019t gotten better,\u201d he said. <\/p>\n\n\n\n

In the last Congress, the Virginia Democrat championed a bill that would have financed research into long-term COVID-19 symptoms, required a study looking at the health care system\u2019s response to long COVID, and called for the development of a public education campaign. Kaine plans this year to reintroduce this bill, known as the CARE for Long COVID Act. <\/p>\n\n\n\n

Getting additional resources for long COVID through the new Congress will require cooperation from a Republican-run House, which was in disarray this week after failing to select a speaker. \u201cExactly how that all will shake out and what does it mean for whether the House … is able to be productive or not\u2014I\u2019d be lying if I told you I wasn\u2019t nervous about it,\u201d Kaine said.<\/p>\n\n\n\n

In the meantime, he said, the long-COVID problem is only going to get bigger and \u201cCongress is going to have to react to it.\u201d<\/p>\n\n\n\n

The Biden administration in November asked for $750 million to support long-COVID research and treatment. It was part of a $10 billion emergency supplemental request to support the pandemic response, but in a setback to advocates, Congress did not grant this funding. <\/p>\n\n\n\n

The Health and Human Services Department said the money would have provided support to the department\u2019s work on long COVID, to doctors who treat patients suffering from the condition, and to community organizations that provide case management and other services. <\/p>\n\n\n\n

\u201cI wish that Congress were taking this a little more seriously,\u201d said Andrew Wylam, president and cofounder of the advocacy group Pandemic Patients. Wylam said lawmakers have not provided the same level of a response to long COVID as they did for acute infections early in the pandemic.<\/p>\n\n\n\n

\u201cIt\u2019s hard seeing the administration say, \u2018We need a whole-of-government approach, we need a coordinated approach to long COVID, and we are going to do all these great things,\u2019 but then when it comes time for Congress to actually participate in that\u2014as the holders of the purse strings, they have to follow through for the administration to really make some progress here in a lot of ways,\u201d Wylam said.<\/p>\n\n\n\n

The White House earlier this year outlined<\/a> actions to address challenges associated with long COVID. This included assessing where access to care could be enhanced through Medicare, Medicaid, and the insurance marketplace. <\/p>\n\n\n\n

The government has a responsibility in ensuring that long-COVID care is accessible through federal programs like Medicare and Medicaid, said associate epidemiology professor Francesca Beaudoin, director of the Long Covid Initiative at Brown University.<\/p>\n\n\n\n

\u201cThis plan also emphasizes Centers of Excellence and Long COVID clinics, but the more we learn about Long COVID, the more it seems like it will be a challenge to house all things Long COVID in one clinic,\u201d Beaudoin wrote in an email to National Journal<\/em>, noting that some clinics have shuttered altogether. <\/p>\n\n\n\n

Congress would also have to put up the dollars to help implement the administration\u2019s Centers of Excellence initiative, said Eric Gascho, vice president of policy and government affairs at the National Health Council. <\/p>\n\n\n\n

Generally, Gascho said, providers need more education concerning long COVID. \u201cThere is a congressional role there,\u201d he said. \u201cMaybe it’s developing Centers of Excellence\u2014at the very least, greater attention placed on primary-care physicians and making sure that they have a better understanding of long COVID.\u201d<\/p>\n\n\n\n

But the conversation around long COVID is currently hampered by limitations in data collection and analysis, Wylam said. He would like to see the CDC improve surveillance efforts. <\/p>\n\n\n\n

\u201cIt\u2019s so hard to have conversations about long COVID with policymakers, but also just the public in general,\u201d he said. \u201cThe numbers that we\u2019re relying on\u2014the range is so broad.\u201d<\/p>\n\n\n\n

A lack of data could also mean that kids with long-term symptoms are being neglected. \u201cI think children have been completely left out of the conversation … and one of the impediments is that we don\u2019t have data,\u201d said disability advocate Megan Carmilani, founder and president of Long COVID Families.<\/p>\n\n\n\n

\u201cThe lack of data is not proof of lack of harm,\u201d Carmilani added. <\/p>\n\n\n\n

Carmilani, who has infection-triggered conditions from childhood illnesses, said she suggested to Kaine\u2019s office that a surveillance program for long COVID be established in schools. The proposal is based on the CDC\u2019s School-Based Active Surveillance Project for myalgic encephalomyelitis\/chronic fatigue syndrome, or ME\/CFS. <\/p>\n\n\n\n

The current project<\/a> includes educating school nurses to identify ME\/CFS and potentially long COVID because people have reported similar symptoms between the two conditions. Carmilani suggested a similar project could be implemented for long COVID broadly.<\/p>\n\n\n\n

She said that training staff to identify long COVID could help with early intervention for children, \u201cbut it\u2019s going to take a huge investment in training of public-school staff and teachers.\u201d<\/p>\n\n\n\n

Long COVID did receive some attention in the spending bill Congress passed shortly before Christmas, as Rep. Ayanna Pressley noted in a statement to National Journal<\/em>.<\/p>\n\n\n\n

“Folks with long COVID are struggling,” said Pressley, who also sponsored a bill in the House focused on long COVID. “They have suffered in silence and continue to face physical and mental anguish without adequate treatment. I was proud to secure several provisions in the recent government spending package that would support COVID long haulers by: prioritizing research of post-COVID respiratory conditions and racial and ethnic health disparities; addressing data gaps of chronic effects of COVID; and expanding access to digital and telehealth\u2014but more must be done.”<\/p>\n\n\n\n

Lawmakers approved $10 million to the Agency for Healthcare Research and Quality for long-COVID research, similar to an idea proposed in Kaine\u2019s bill. <\/p>\n\n\n\n

\u201cThis still is not a high enough priority for Congress,\u201d Kaine said. \u201cThe Biden administration has done a good job, I think, of laying out why we need to do more, but we’ve got to see policy and budget support that matches the need.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":"

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