The following post is part of our series on perspectives from disabled and chronically ill people regarding COVID-19. This post is not intended as medical advice.
I take hydroxychloroquine (Plaquenil) for my autoimmune disease. Ever since President Trump and Dr. Oz promoted it as a miracle cure for COVID-19 — based on an unproven theory and very limited study that has since raised serious red flags—my health has been at risk. Like toilet paper, people have been hoarding it. According to the Annals of Internal Medicine, pharmacies reported hydroxychloroquine shortages within 24 hours of President Trump tweeting about its so-called game-changing benefits, endorsing it, along with the antibiotic azithromycin, as a magical solution for the pandemic.
Suddenly, reports emerged of doctors writing hydroxychloroquine prescriptions for themselves and their families and friends, even going so far as to fraudulently claim that perfectly healthy, able-bodied people had Rheumatoid Arthritis, an autoimmune disease for which the drug is often necessary. Take a moment to let that sink on. Due to the president of the United States waxing poetic about a drug proven to help treat autoimmune diseases — and still unproven to treat COVID-19 —those who rely on it to survive are finding themselves without it. Because people without any symptoms of COVID-19 are hoarding it as a “just in case.”
I take hydroxychloroquine to treat Sjogren’s syndrome, a systemic autoimmune disease that has rendered me disabled, with a serious case of urticarial vasculitis that causes severe chronic pain. Hydroxychloroquine is by no means a cure (I still suffer regular vasculitis flares and what I’m able to accomplish in a day is limited) but without it, I could go back to being bedridden, unable to write, walk my dog, play with my cat or do any of the things I love. After trials and errors with many, many different drugs, hydroxychloroquine is the best, least dangerous drug I can take for my incurable condition. (That is not to say it’s without side effects — by no means.) But when I called in my refill for it this month, my pharmacist here in Los Angeles told me she didn’t have any. She reiterated what I already knew — doctors were prescribing it for people who didn’t really need it, based on fear and misinformation — and said she hadn’t been able to get any in stock. I’m not alone in this plight.
My online support group for urticarial vasculitis was abuzz with women facing my same predicament. 80% of all known autoimmune diseases in the US are suffered by women. Like Carrie Bradshaw, I can’t help but wonder — actually, no, I’ll make a definitive, only me statement: If 80% of men suffered from a serious illness only alleviated by a very specific drug, I highly doubt it would be so easily snatched away.
Anessa Joy Opsahl, a woman from Iowa who takes hydroxychloroquine for Rheumatoid Arthritis in addition to urticarial vasculitis, says “I couldn’t get mine filled for almost a month. Which caused me to be in a complete flare-up multiple times. I finally got it in my hands this past week.” But with one caveat: Her doctor told her to cut her dose in half.
Sarah Lively-Lopez, a woman from Southern California who has been taking hydroxychloroquine for 12 years to treat her vasculitis, shared the most rage-inducing email with me. It stated that Kaiser, her insurance company, was restricting the use of hydroxychloroquine to “inpatient use only.” Meaning that once she finishes her last remaining bottle, Lively-Lopez would have to be hospitalized to get her hands on the drug that’s been managing her vasculitis for over a decade.
This is not an unlikely possibility. Any of us autoimmune patients could end up hospitalized if we don’t have access to the medication we need to survive.
Randi Niklekaj, a woman from Minnesota who identifies as a #LupusWarrior, says, “We rely on hydroxychloroquine to stay stable, healthy, alive. This is no joke.”
In a statement from the Arthritis Foundation, Michelle Petri, MD, a rheumatologist who treats systemic lupus erythematosus (SLE) at Johns Hopkins University School of Medicine, says “It should not be forgotten that SLE is the fifth or sixth leading cause of death in African-American and Hispanic-American young women. Hydroxychloroquine is the only SLE treatment shown in multiple studies to improve survival in SLE.”
Yet, according to Tarra Rondeau, a vasculitis patient in Florida who is good friends with a hospital pharmacist, “doctors are giving it to every patient who comes in with a cough or fever.” This leaves those of us who need it to combat chronic illnesses out of luck and out of medication, which is terrifying and beyond infuriating.
I think we can all agree that finding a cure for COVID-19 would be incredible. Those of us with autoimmune diseases want this more than ever, as many of us fall into the COVID-19 “high risk” category, making us more susceptible to getting it and less capable of fighting it off.
It should be noted, though, that The Washington Post gave Trump Four Pinocchios for advocating for an “unproven treatment (that) provides potentially false hope and has led to shortages for people who rely on the drugs.” And that a new French study, published April 14th, found that hydroxychloroquine did not help patients with coronavirus and caused serious heart complications — despite Dr. Oz’s continued minimization of the drug’s very real risks —requiring eight pneumonia patients to stop taking it.
If any incontrovertible science actually comes to show that that hydroxychloroquine can benefit COVID-19 patients, then a plan should definitely be put in place to ensure they have access to it. But it should not be taken away from autoimmune patients. Our lives are not disposable.
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