The University of North Carolina closed its Long COVID clinic last week after its federal funding ran out. It was the sole Long COVID clinic in North Carolina.
The clinic has been a lifeline to thousands of people living with complex conditions often triggered by infection, including Long COVID, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and postural orthostatic tachycardia syndrome (POTS).
#MEAction North Carolina advocates are mobilizing the community to call their Congress Members to demand ongoing federal funding to keep the clinic open.
“This clinic was one of the few places where patients with Long Covid and ME/CFS could find doctors who actually understood their illness,” said Gillian Lizars, a patient of the clinic. “There is no easy replacement for this clinic. Most PCPs are uninformed on infection-associated chronic conditions (IACC) like Long COVID and ME/CFS. The default practice across North Carolina and neighboring states is to refer patients to the UNC Long COVID Clinic. PCPs need this help as much as patients do.”
While a few of the clinicians have offered to see Long Covid patients as they are absorbed back into their original departments, several important services will no longer be offered that are critical for living with these highly disabling conditions: disability paperwork, prior authorizations, referrals outside the local area, and social worker support.
“We also are losing vital resources – all necessary to survive the realities of life with such a disabling condition. This is a very sick patient population,” said Lizars.
Since the clinic launched in 2021, the UNC Long COVID clinic has provided interdisciplinary care to more than 3,500 patients from across 20 states. An unpublished study from the clinic confirms that almost 75% of its patients have had to significantly cut back or altogether stop working, 33% have fallen into debt, and over 50% are struggling to complete basic activities of daily living like showering, dressing, cooking, and cleaning.
1 in 6 North Carolinians has experienced Long Covid, per the NC HHS. And since repeat COVID-19 infections increase the risk of Long Covid, this disease is only going to affect more people.
“Leading the UNC COVID Recovery Clinic has been the greatest professional honor of my career,” said John M. Baratta, MD, MBA, Founder and Co-Director of the UNC COVID Recovery Clinic. “The clinic’s closure marks the end of an important chapter, but our commitment to patients with Long COVID and ME/CFS continues. Through the UNC Department of Physical Medicine & Rehabilitation, we’re proud to offer ongoing evaluation and treatment for these often misunderstood and debilitating conditions.”
The following statistics show the critical need for the UNC Long COVID Clinic:
