According to a story from Buzzfeed News, Sharon Greenstein, who lives with the rare autoimmune disease known as Sjögren’s syndrome, can no longer find the drug that she uses for treatment, and she doesn’t know when she will get any more. This is because the drug in question is hydroxychloroquine, which has been hyped up by President Trump as a treatment for coronavirus/COVID-19, although it hasn’t been tested enough yet.
About Sjögren’s Syndrome
Sjögren’s syndrome is a rare, chronic, autoimmune disorder that specifically impacts the moisture-producing glands of the body. It is most distinguished by dry skin, eyes, and mouth. The disease often manifests in the fourth or fifth decade of life. Vaginal dryness is also a problem for female patients, who are more commonly affected than men. A combination of genetic predisposition alongside an environmental triggering event (such as an infection) are believed to cause Sjögren’s syndrome. A family history of autoimmune disease should be considered a risk factor. Aside from persistent dryness in various areas of the body, disease progression can cause more systemic symptoms, like fatigue, difficulty swallowing, joint pain, and kidney dysfunction. The syndrome also increases risk of other autoimmune diseases and non-Hodgkin lymphoma. Treatment is symptomatic and includes NSAIDs, artificial tears, and other immunosuppressant drugs. To learn more about Sjögren’s syndrome, click here.
Drug Shortages Leave Rare Patients in a Lurch
There has been a surge in demand for hydroxychloroquine and chloroquine recently as people have rushed to get their hands on the treatment in desperation. Sharon needs to take two tablets of the medicine every day or she is racked by debilitating pain and fatigue. Her ability to function is almost completely lost without it. As stocks of the medication have been bought up, there is now a severe shortage.
When Sharon last stopped by the pharmacy to fill her prescription, the pharmacist told her they didn’t know when they would have the drug in stock again. Sharon resorted to buying a bottle of Plaquenil, which is the brand name version of the treatment that runs at $2,000 for a month’s supply and isn’t covered by insurance. She was able to use a coupon to reduce the price to $664, but that is far greater than her typical copay of just $15. Sharon can’t afford it for long.
Her doctor has told her to try to make the supply last by just taking one pill a day, but this isn’t enough to control the symptoms. Meanwhile, Sharon lives in fear of COVID-19, which she is more vulnerable to because of her Sjögren’s syndrome. She was recently tested for the virus after presenting with a cough and fever and is waiting in self-quarantine for the results.