The 20-year-old patient advocate Morgan Gleason
Morgan Gleason, 21, has an autoimmune condition called juvenile dermatomyositis, which causes her body’s immune system to attack its own cells and tissues.
She has been taking a drug called hydroxychloroquine, sold under the Plaquenil brand, for eight years now. It helps her avoid “flareups,” she says, which often begins with muscle weakness, making it difficult for her to raise her arms above her head to brush her hair. From there, she quickly deteriorates to the point where she will feel pain and try to use her hands for basic tasks, including her schoolwork.
Hydroxychloroquine is an antimalarial drug that is also commonly used to treat a wide range of autoimmune diseases, including lupus and conditions such as juvenile dermatomyositis.
But now deliveries are low across the country for patients like Gleason who trust the drug. Since President Donald Trump has repeatedly and aggressively proclaimed the drug as a potential cure for the new coronavirus, hydroxychloroquine has fled the shelves of pharmacies. Earlier this month, autoimmune patients could find it at a pharmacy in the area, even if it meant calling a handful. But as of this week, several doctors told CNBC that there are major flaws in many states, and finding it somewhere has been challenging.
Gleason describes the possibility that she will not have access to the drug as “scary.”
A recipe for hydroxychloroquine.
Photo: Morgan Gleason
“Most of my patients until Friday could get it just by calling a lot,” said Kenneth Kalunian, a rheumatologist at UC San Diego Health who treats patients with lupus, among other illnesses. “But this week they have been completely cut so far.”
The Johns Hopkins Lupus Center describes hydroxychloroquine that helps reduce flare-ups in some patients “as much as 50%”, noting that some may be on the drug for the rest of their lives to keep their symptoms in check. Hydroxychloroquine is the most common drug for autoimmune conditions compared to other antimalarials as it is generally believed to cause fewer side effects.
In recent weeks, Trump has said he believes the drug could be a “game changer” against coronavirus. But the White House’s advisor and the leading infectious disease specialist Dr. Anthony Fauci has demanded much more testing of the drug before being asked to take COVID-19.
“The data is really only, at best, suggestive,” Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, CBS: “Face the Nation” on April 5. “There have been cases that show that it can be an effect, and there are others that show that there is no effect. So I think that when it comes to science, I don’t think we could definitely say it works.”
But with all concern about COVID-19, some pharmacists and doctors have said that healthy people are starting to demand the drug just to keep it at hand. When this type of storage occurs, it makes it especially difficult for autoimmune patients like Gleason to access the medication. Dr. James Wantuck, co-founder and medical provider of the telemedicine service Plushcare, says he receives “daily inquiries” for hydroxychloroquine.
In light of the shortage, doctors treating autoimmune patients are pushing decision makers and drug manufacturers to increase production as quickly as possible.
“I ask my patients to take the drug for as long as they can, and to know that the patient groups, medical associations and their doctors are advocating for them,” Dr. Kalunian.
Meanwhile, the data from studies examining hydroxychloroquine do not indicate that it is a panacea as a treatment for COVID-19. There are anecdotes from doctors who use it for their coronavirus patients, sometimes in combination with other medications, but it does not prove that the drug should be used in a wider population. So far, human trials have only shown mixed results.
“It’s stressful,” Dr. Isabelle Amigues, a rheumatologist based in Denver, Colorado. “On the one hand, we understand that the government wants to give some hope. But you take medicine from a patient where we know it can help and give it to a patient where we don’t know if it works.”