Authors: Camille Kroll, Timothy Poor, Amy McQueen, Mikayla Johnson
Our team spoke with three local healthcare providers caring for Long COVID patients. These providers talked about how they treat Long COVID and the barriers patients face when seeking treatment.
Treatment Approaches for Long COVID
Nurse practitioner Sarah Alleman, NP-C, has been the main healthcare provider at the Care and Recovery After COVID-19 (CARE) Clinic at Washington University in St. Louis since the departure of Dr. Maureen Lyons in October 2022. She wants people to know that treating Long COVID requires a team effort. There is no single blueprint for treating Long COVID; every patient is unique and no journey to recovery is the same. A collaborative and holistic approach is essential.
While certain medications, such as Paxlovid and low-dose Naltrexone, show promise in preventing and treating Long COVID, there is no cure yet for the condition. Alleman stresses that physiotherapy is currently the leading treatment for Long COVID. Her goal is to work with Long COVID patients to improve their overall quality of life, both emotionally and physically. Long-term care often involves collaborating with physical, occupational, and cognitive therapists to help patients manage their activities of daily living. This includes learning energy management strategies to help reduce fatigue.
This is where lifestyle medicine professional Mollie Dwivedi, PA-C, at the Living Well Center comes in. The Living Well Center is an interprofessional lifestyle medicine program at Washington University in St. Louis. The Center helps patients manage their symptoms from various chronic conditions, including Long COVID, by focusing on lifestyle changes around nutrition, physical activity, substance use, sleep, stress, and social connections. With Long COVID, conventional wisdom does not always apply. Exercise, for example, is not always recommended, since trying to return to pre-COVID levels of activity can be harmful to Long COVID patients and worsen symptoms. Since every person with Long COVID is different, each treatment plan is individual and often involves coordinating between multiple specialists, such as dietitians, occupational therapists, physical therapists, and speech therapists. While the Living Well Center sees patients at many different points in their Long COVID recoveries, Dwivedi says that many wait until their most severe symptoms have resolved.
Barriers to Long COVID Treatment
Primary care support is essential for treating Long COVID, especially since the CARE Clinic requires both a primary care referral and a documented positive COVID test (including home tests noted in a patient’s record) to schedule an appointment. Unfortunately, many primary care providers do not yet recognize Long COVID as a medical condition or know referral options. Dwivedi explains: “Patients feel that they are not believed. Many of their healthcare providers have told them that there is nothing wrong with them; the testing is normal…That there is nothing to be done about it.” She emphasizes that doctors who are unaware of this new condition will struggle to appropriately counsel their patients.
“Patients feel that they are not believed. Many of their healthcare providers have told them that there is nothing wrong with them; the testing is normal…That there is nothing to be done about it.”
Mollie Dwivedi, PA-C, lifestyle medicine professional at the Living Well Center
Others struggling with Long COVID do not have access to primary care at all. Dwivedi believes that financial support and insurance coverage are pressing issues for patients with Long COVID since many are unable to work and must file for disability benefits or request work accommodations. She explains that as these patients’ healthcare needs go up, their access to resources go down after they lose their jobs and health insurance. All that paperwork also requires substantial energy; those with Long COVID often have little to spare since profound fatigue is a common symptom. For those who switch to Medicaid, several essential therapies to help treat Long COVID – physical therapy, occupational therapy, and speech therapy – are minimally covered. She also acknowledges that treating Long COVID requires frequent healthcare visits – this is a major barrier for patients who have difficulty making appointments due to lack of transportation, childcare, or being unable to take time off from work.
Beyond primary care support, a strong social network is also key to the recovery process. Unfortunately, many patients lack this resource. Clinical social worker Victoria Haight, LCSW, says patients often tell her, “I try to talk to my family or friends but they’re tired of me continuing to talk about Long COVID.”
Everything they experience is real even though our testing is not able to collect exactly what they’re experiencing and why.
Mollie Dwivedi, PA-C, lifestyle medicine professional at the Living Well Center
How can these barriers to care be addressed?
- Increase Support. Haight works with patients to check on their social service needs and connect them to community referrals and resources, such as assistance filing for social security. Although the CARE Clinic does not have any support groups – something they hope to change – the Living Well Center holds 60-to-90-minute group appointments with Long COVID patients that focus on lifestyle changes. These appointments also serve as a form of support. Haight emphasizes that being with others with Long COVID can help make those struggling feel less alone.
- Raise Awareness. Expanding knowledge to help primary care providers recognize the signs of Long COVID is important. Dwivedi encourages healthcare providers to listen to and believe patients who may have Long COVID, as well as to stay up to date on Long COVID research since the recommendations are continually evolving. She reminds us that Long COVID is an “invisible disability”. However, “Everything they experience is real even though our testing is not able to collect exactly what they’re experiencing and why.”
- Continue Research. Although medicine does not have all the answers yet about Long COVID, Alleman is optimistic about ongoing research. She says, “I’m very hopeful. [Patients] are slowly improving.” She recommends patients talk to their primary care doctors if they are concerned that they may be suffering from Long COVID.