Millions of long COVID patients around the world experiencing highly draining, often disabling symptoms are waiting for effective treatments and therapies. The lack of answers about what’s causing their symptoms and how to treat them has even led some to pursue unproven treatments like ivermectin. But as scientists continue researching treatments for the wide range of long COVID symptoms, there are some options patients can pursue to get care and manage their symptoms.
We spoke to long COVID doctors and researchers about how to seek care if you’re experiencing long COVID symptoms. This article is meant for informational purposes and does not substitute for professional medical advice or conversations with your health care provider.
First step: See your primary care doctor
Physicians and experts agree that talking to your primary care doctor is a good first step, even though many primary care doctors are still learning about long COVID as new research is done. Your primary care doctor is “somebody that knows you, somebody that can make sure that something else isn’t going on [by] excluding other possible diagnoses and then working with appropriate subspecialty referrals if needed,” said Dr. Francesca Beaudoin, a Brown University professor and director of the Long COVID Initiative. (If you’re uninsured or not able to afford seeing a doctor, there are some community health centers around the country that offer all kinds of free or low-cost health services, including primary care. Find one near you here.)
Dr. Alba Miranda Azola, co-director of the Johns Hopkins Post-Acute COVID-19 Team, says that seeing your primary care physician first can rule out other illnesses that may be causing your symptoms. “[We’ve had] patients that have been referred to us for fatigue that have thyroid issues, like hypothyroid. That’s very severe,” Dr. Miranda Azola says. “So there are things that need to be screened… not everything is [long] COVID. So going to your primary care physician and figuring out the initial workup to rule out other causes is important.” She adds, “Once that has been done, and they’re unable to identify the specific cause, or they are able to tailor or figure out what are the main issues that you’re having from your long COVID, they can direct you to a specialist.”
If you’re experiencing smell loss or smell distortion specifically, Dr. Zara Patel, an otolaryngologist and rhinologist at Stanford Medicine who treats long COVID patients at the university’s clinic, says that you can show your primary care provider this document from an international consensus statement. A group of smell experts from around the world created it to guide physicians on evaluating, diagnosing, and treating patients with smell disorder or dysfunction. This could guide your doctor in how to proceed or help get you a referral to an ear, nose, and throat (ENT) specialist. The CDC has similar documents for other long COVID symptoms in this guide for health care providers.
Long COVID clinics and specialists
Once your primary care doctor rules out anything else that may be causing your symptoms, they may refer you to a long COVID clinic or a specialist. Common specialists you may be referred to, depending on your symptoms, include: a pulmonologist (lung doctor), cardiologist (heart doctor), neurologist (brain doctor), or rheumatologist (immune-related diseases doctor).
Long COVID clinics may have a long wait list—there are around 250 post-COVID clinics in the country as of November, according to data from the nonprofit Survivor Corps, and millions of long COVID patients. Some clinics may require you to prove that you’ve had COVID-19 in the past with a positive PCR test result. Once at a long COVID clinic, “we evaluate the patient, depending on the specific symptoms that they’re suffering from,” Dr. Miranda Azola adds. “Either they go to pulmonary, or they see both pulmonary and physical medicine and rehab.”
Covering the cost of long COVID care, with and without insurance
Insurance coverage for long COVID largely depends on the type of plan you have and its individual rules, like needing to get a referral from your primary care physician before seeing a specialist or see an in-network specialist. Also, keep in mind that there are resources available if your claim for coverage is denied, like appealing your plan’s decision.
If you’re uninsured, there are still options out there. Michael Arrigo, a health care data and regulations expert, tells PGN that long COVID patients should keep in mind that under the Federal Emergency Medical Treatment and Active Labor Act (EMTALA), anyone who shows up at an ER with an emergency medical condition must be treated and stabilized, even if they don’t have health insurance. “If they have a serious or a life-threatening condition because of long COVID, they should never hesitate to go to the emergency room because they’re worried about insurance,” he says.
There are other options that you can explore if you’re uninsured and have low income, according to Arrigo. First, you can look into whether you can get Medicaid. “Just about every state doesn’t charge anything for that type of insurance—and you typically have to pay little or nothing to get the medical care that you need,” he says. Second, you can look into getting disability insurance, as long COVID can be considered a disability under the Americans with Disabilities Act (ADA).
If you’re an undocumented immigrant, you can look into what the health care policies are in your area. For instance, in New York state, undocumented immigrants are eligible for Medicaid and for private health insurance. And in New York City, immigrants, regardless of status, can access free or low-cost health insurance at city-owned hospitals. There are also community clinics nationwide where anyone can access free or low-cost care.
Preparing for your doctor’s appointment
Before you see your doctor—either your primary care doctor or a specialist—it can help to prepare for your appointment. Below find helpful tips, including some from the CDC:
- Make a list of all your current and past health care providers as well as all your medical conditions.
- Write a summary of the long COVID symptoms you’re experiencing, including: when you had COVID-19 and when your long COVID symptoms started; a list of prior treatments and diagnostic tests for long COVID; what makes your symptoms worse; how the symptoms are affecting your daily life; and what your worst symptoms (or “chief complaints”) are.
- Make a list of all the medications or supplements you’re currently on.
- Prepare some questions for the doctor or health care provider.
- Consider asking a friend or family member if they can join you at the appointment and act as your advocate: They can help remind you of anything you might forget during the appointment and also take notes.
- Make a plan for how you’ll get to your appointment.
- Review this CDC checklist the day before to make sure you have everything you need.
Navigating long COVID care, visiting multiple doctors, keeping track of appointments, and making health insurance claims can be overwhelming, especially as you manage symptoms. Below, find a list of resources, including a map of long COVID clinics, a list of virtual care centers, and patient support groups.
- Survivor Corps:
- Body Politic: COVID-19 Support Group
- Gothamist: How to get insurance coverage for long COVID as federal benefits get ready to expire
- HealthInsurance.org: How is treatment for long COVID covered by health insurance?
- COVID-19 Longhauler Advocacy Project: