The U.S. Senate held its first hearing about Long COVID on January 18, featuring Long COVID patients, their families, and experts. Witnesses at the hearing of the Health, Education, Labor and Pension (HELP) Committee called for more urgency and research about Long COVID, which afflicts millions of Americans.
The hearing attracted an overflow crowd of patients and their advocates at the nation’s capital. Senator Bernie Sanders, the HELP committee chair, opened the hearing saying that Long COVID had not gotten enough attention considering it affects some 16 million Americans and has put 4 million out of work.
Takeaways from the hearings and a report by the Center for Infectious Disease Research and Policy at the University of Minnesota:
Patients and families:
Angela Vasquez, a disabled former athlete, Long COVID patient, and former president of The Body Politic (a Long COVID advocacy group), developed Long COVID in 2020. Her symptoms include blood clots and fatigue. Vasquez, who is homebound much of the time and receives weekly intravenous treatments at a hospital, told Congress:
“With enough political will, we can fund a Long COVID moonshot that transforms clinical and community care for all of us.”
Rachel Beal of Virginia has been living with fatigue, chronic pain, and dizziness for three years. Although unable to work, she said her applications for Social Security disability have been denied twice. Beal testified, “Long COVID is recognized by the Americans with Disabilities Act. It should be easier for someone with Long COVID to be approved for SSDI.”
Nicole Heim’s 16-year-old daughter suffered from severe depression and brain fog. She started receiving care at a Long COVID clinic after months of waiting for Medicaid approval. She told senators:
“Long COVID took my straight ‘A’ honors student. . .with an active friend group and stripped her of life as we knew it. My recommendation to this committee and our health care system is simple – increase awareness around pediatric Long COVID.”
Experts:
Ziyad Al-Aly, MD from Washington University in St. Louis is part of a team that first identified Long COVID. He stressed that there are still no FDA approved treatments:
“There are zero FDA approved medications for the treatment of Long COVID. This must change. People suffering from Long COVID needed treatment yesterday. The ongoing and planned trials for Long COVID are too slow and too small. This must be an all-hands-on-deck situation.”
See an interview with Dr. Al-Aly.
Charisse Madlock-Brown, a professor at the University of Iowa, said challenges in identifying Long COVID have meant many cases have not been diagnosed. She also called for a “moonshot” initiative to bring together researchers in a coordinated way.
Michelle Harkins, MD, an ICU doctor and RECOVER Initiative researcher, spoke about the importance of Long COVID clinics. She told senators:
“Very few Long COVID clinics exist nationwide. . . What we need are multidisciplinary clinics to address the myriad of [complex symptoms] that these patients face. We need [multiple specialists] in one location so that the patients can be seen by whomever they need.”
Tiffany Walker, MD, co-founded a Long COVID clinic in Atlanta. She urged health officials to expand drug trials and speed up the development of medication to treat Long COVID.
Long COVID patients and experts urged Congress to expand funding for Long COVID clinics and larger scale research. Witnesses also called for increased awareness and education among doctors and the public. Four bills concerning Long COVID have been introduced in Congress including one sponsored by HELP committee member Senator Tim Kaine, who attended the hearing. Testimony from this hearing will help Congress decide its next steps.
To watch the hearing and read all of the witness testimony visit: http://help.senate.gov/hearings/addressing-long-covid-advancing-research-and-improving-patient-care
