On Thursday, the Department of Health and Human Services (HHS) announced they are seeking nominations for the Secretary’s Advisory Committee on Long Covid, which will incorporate perspectives from the public to inform the executive branch on Long Covid.
Advocates have pointed out the committee was originally announced in the National Research Plan on Long Covid in August 2022, showing a dire lack of urgency to tackle the Long Covid crisis and include the perspective of people living with the disease. The HHS will consider up to 20 members from a wide array of expertise from people with Long Covid, disability groups, chronic illness groups, health care workers, public health groups, and many others, according to a document it released about qualifications for the committee
In a prepared statement issued in a press release, HHS Secretary Xavier Becerra wrote that by establishing the Secretary’s advisory committee on Long Covid, “we are ensuring people with the most experience, and the best ideas, have an opportunity to inform the next steps in this important work.” Adm. Rachel L. Levine, Assistant Secretary for Health said, “People with lived experience must be looked at as partners in the work to address Long Covid.”
Nominations for the committee are due on January 16, 2024, at 11:59 pm EST. The HHS requests that nominations be submitted by e-mail to LongCOVID@hhs.gov and addressed to Allison O’Donnell. More information on the requirements for submission can be found here.
While many have welcomed the announcement including Virginia Congressman Don Beyer, it has also been criticized by people with Long Covid — primarily for the HHS’s lack of urgency — taking more than a year to begin putting together the committee that some say should have been formed years ago. People with Long Covid similarly criticized the urgency and effectiveness of the Office of Long Covid Research in July, when the HHS announced that this office only has two full-time employees for the millions of people with Long Covid in the United States.
Kristin Houlihan, a person bedbound with Long Covid/ME, said she was pleasantly surprised by the announcement. “I wanted to nominate myself,” she wrote to The Sick Times, stating that the committee needs ordinary people and would benefit from the perspectives of severe patients. However, she worries the committee won’t be accessible to severe patients like her. She wrote that there are many barriers for severe patients to share their perspectives and expertise and oftentimes formal committees don’t have any severe patients on their rosters. “Having the committee specifically hold spots for severe or very severe patients and/or their representatives would be phenomenal.”
But Houlihan, like many other people with Long Covid, doesn’t think the HHS or other government organizations are handling the Long Covid crisis with the urgency it deserves. The federal government has been particularly slow in responding to the crisis and does little to prevent Covid-19 infections that lead to more Long Covid cases. Other critics have pointed out that the announcement is shallow if the public health institutions fail to educate the public on Long Covid and the Biden administration actively denies the continuing pandemic.
Similarly, the National Institutes of Health (NIH) has been heavily criticized not only for its “glacial pace” in handling RECOVER, but also for ignoring and pushing back against patients and scientists who advised RECOVER that exercise trials could harm people with Long Covid, as my colleague Betsy Ladyzhets reported for STAT and Muckrock in April. Some patients are concerned that the HHS will tokenize its representatives like the NIH has done in RECOVER, especially since the HHS dragged its feet to set up the committee in the first place.
The Sick Times sent the HHS a list of questions about the advisory committee and the concern of tokenizing patients. A spokesperson from the Office of the Assistant Secretary of Health replied with a general response that didn’t answer many of our specific questions.
The HHS wrote, “HHS, as well as its federal partners in the whole-of-government response to the longer-term impacts of the COVID-19 pandemic, center their response in the lived experience of those who have Long COVID as well as those that care for them. We will continue to listen to and learn from them as we make progress toward addressing their most urgent calls to action.”
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