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When Kristen Renton, an actress based in Valencia, Calif., began experiencing symptoms of lupus — an autoimmune disease that causes the body to attack its own tissues and organs — some 10 years ago, it took five doctors before she finally received a proper diagnosis.
Suffering from painful symptoms of the disease, which can include fever, fatigue, joint pain and swelling, a butterfly-shaped rash on the face, and skin lesions, Renton, 38, found relief when she was prescribed Plaquenil, the brand name for hydroxychloroquine, an antimalarial drug that hit the market in the mid-1950s and has since become a common treatment option for lupus patients.
To say the medication helped her is an understatement, as Renton, who has appeared on TV shows such as “Sons of Anarchy” and “Days of Our Lives,” told Fox News her symptoms improved “astronomically.”
But the actress, one of the estimated 1.5 million lupus patients in the U.S, now worries about her well-being. Not only because she is more at-risk for the novel coronavirus itself — lupus patients are generally considered to be immune-compromised and therefore at a greater risk for infections overall — but because the medication that changed her life is now in scant supply.
The drug recently made headlines when it was touted as a possible treatment for COVID-19, the novel coronavirus that as of Tuesday has sickened nearly 370,000 and killed more than 10,000 in the U.S. alone. On March 31, however, The U.S. Food and Drug Administration (FDA) posted a notice of a shortage of hydroxychloroquine, while the American Society of Health-System Pharmacists soon reported the same. Meanwhile, doctors in some states are reportedly hoarding the medication for themselves and their family members.
But the effectiveness of hydroxychloroquine has been a source of debate within the medical community, with some warning it’s too soon to know if it’s an efficacious option in treating patients with the novel virus. Theoretically, the drug, with its ability to quiet an immune system response, could help prevent a COVID-19 infected person’s immune system from going into overdrive, attacking the virus so vigorously that it ultimately causes organ failure and death, as has occurred in some patients. Though preliminary studies have shown the drug protects lab-grown cells from the virus, researchers are now working to better understand hydroxychloroquine and its possible effectiveness in treating COVID-19 patients in human clinical trials, according to the Centers for Disease Control and Prevention (CDC).
When Renton first heard the drug was being explored as a possible treatment option, “I was hopeful,” she said. But soon after, “I started thinking about what happened with all the toilet paper, and hand sanitizer, and groceries, and all the things that people are afraid they would no longer be able to get – and began hoarding. And then I realized that was probably what was going to happen to my medicine. Unfortunately, I was right.”
Already, Renton claims she is feeling the effects of the shortages first hand, unable to refill her Plaquenil prescription.
“I was due for a refill five days ago and unfortunately have not been able to find any,” she said. “I have contacted both my local pharmacies and the mail pharmacy I work with, and none have been able to give me an answer as to when I will get my medication.”
The Lupus Foundation of America has issued a similar sentiment, warning lupus patients, “It is not possible to predict the full scope and duration of the shortage or the long-term impact the coronavirus pandemic will have on the supply of hydroxychloroquine,” providing those in need with tips and strategies in their quest to get a refill.
An estimated 70 to 80 percent of lupus patients in the U.S. are taking hydroxychloroquine, Dr. Daniel J. Wallace, a board-certified rheumatologist and co-founder of a lupus foundation in Los Angeles, Lupus LA, told Fox News. He said many of his patients are also experiencing difficulty in getting the much-needed medication.
“There are backorders of Plaquenil. Many of my patients who get a three-month supply are now only given a one-month supply. Among those who are getting any at all, they’re not always getting their full order,” he said.
In LA, for instance, “Pharmacies are back-ordering and there are a few pharmacies that are putting some of the drugs aside for patients who are good patients and know they have lupus," he added. "For those with new prescriptions, I have been asked by a few pharmacies to write a note to document that a patient really has lupus." Other pharmacies, such as Walgreens and CVS, have announced similar measures to protect patients.
Adam Selkowitz, the chairman of the board at Lupus LA, is also a lupus patient. But his concerns are mainly for his 3-year-old daughter, who was diagnosed with a lupus-related autoimmune disease called COPA Syndrome when she was just 18 months old. Selkowitz said his daughter takes Plaquenil every day “to help her lungs and lung-related symptoms.”
“It was very hard to get the medicine into a liquid form, so she had to learn to swallow a pill (with the help of some yogurt) before she turned 3,” he told Fox News. “It’s very important for her care that she continue her regular dose of Plaquenil. We’ve made a lot of progress in terms of keeping her illness under control and I believe that Plaquenil is an important piece of that picture.”
Selkowitz said his daughter takes a fourth of a pill a day, meaning she likely has enough of the medication for the foreseeable future. That said, he is still “very concerned about our patient population.”
“We’re seeing an incredible increase in concern from our community about a Plaquenil shortage and I worry the added stress on those patients might lead to lupus flares,” he added. “Stress can be a real trigger for many lupus patients and the anxiety and real fear being generated from these potential shortages is something we’re all watching closely.”
The U.S. Department of Health and Human Services (HHS) in a recent statement announced it had accepted 30 million doses of hydroxychloroquine sulfate donated by Sandoz, which is owned by the Switzerland-based pharmaceutical company Novartis. In a donation from Bayer Pharmaceuticals, the department also accepted one million doses of chloroquine phosphate, sold under the brand name Resochin. Both donations were intended for "the possible use in treating patients hospitalized with COVID-19 or for use in clinical trials," as per the statement.
Other companies may follow suit, the HHS said at the time, while some have “ramped up production to provide additional supplies of the medication to the commercial market."
The donations may also help offset the shortages, especially for those who are already taking the medication for reasons not related to COVID-19. Yet the immediate impact is worrisome for lupus patients like Renton who depend on hydroxychloroquine to live a comfortable life.
“I only have about a week’s supply left. I have a few more days before I’m going to be in dire straits,” she said. “I understand there’s such a vast number of unknown variables at this point. People are holding onto whatever gives them hope that they’ll be OK. I wholly understand that.”
But, Renton noted, “I do want people to know that this shortage puts me at greater risk than I already am. I just want them to understand my perspective as well.”