Amid Hydroxychloroquine Hopes, Lupus Patients Face Shortages

Sara Talpos

March 23, 2020

For almost a quarter century, Julie Powers, a 48-year-old non-profit professional from Maryland, has been taking the same medication for her lupus — and until recently, she never worried that her supply would run out. Now she's terrified that she might lose access to a drug that prevents her immune system from attacking her heart, lungs, and skin. She describes a feeling akin to being underwater, near drowning: "That's what my life would be like," she said. "I'll suffocate."

Powers' concerns began roughly a week ago when she learned that her lupus drug, hydroxychloroquine (hi-DROCK-see-KLORA-quin), may be helpful in the treatment of Covid-19, the illness caused by the SARS-CoV-2 virus now racing across the planet. The medication was already being used around world to treat Covid-19 patients, but evidence of its effectiveness was largely anecdotal. Then, on Monday, March 16, a renowned infectious disease specialist, Didier Raoult, announced the results of a small clinical trial in France showing that patients receiving a combination of hydroxychloroquine and the common antibiotic azithromycin had notably lower levels of the virus in their bloodstream than those who did not receive the medication.

Demand is skyrocketing, with some evidence suggesting that doctors are writing prescriptions for patients with no known illness — as well as for themselves.

Upon hearing this news — and anticipating a possible drug shortage — Powers called her rheumatologist that same day and requested a prescription for a refill. She was lucky to get it.

In the last week, this once obscure drug has been thrust into the national spotlight with everyone from doctors, to laypeople, to the U.S. president weighing in. The attention has so dramatically driven up demand that pharmacists are reporting depleted stocks of the drug, leaving many of the roughly 1.5 million lupus patients across the country unable to get their prescriptions filled. They now face an uncertain future as the public clings to one of the first signs of hope to appear since the coronavirus began sweeping across the U.S.

But scientists and physicians caution that this hope is based on studies that have been conducted outside of traditional scientific timelines. "The paper is interesting and certainly would warrant future more definitive studies," Jeff Sparks, a rheumatologist and researcher at Harvard Medical School, said of the French study. "It might even be enough data to use the regimen off-label for sick and hospitalized patients.

"However," he added, "it does not prove that the regimen actually works."

This has not stopped widespread promotion of the drug cocktail — including by U.S. President Donald Trump, who has helped to stoke demand for hydroxychloroquine by invoking it during his daily coronavirus press briefings. In a tweet on Saturday, the president described the regimen as possibly one of the "biggest game changers in the history of medicine." (Anthony Fauci, the infectious disease expert spearheading the U.S. response to the coronavirus pandemic, called the evidence for the treatment anecdotal. "You really can't make any definitive statement about it," he told reporters Saturday.)

Despite efforts to pin blame for the shortages on Trump alone, however, hydroxychloroquine scarcity was already setting in weeks ago, as doctors began responding on their own to percolating and preliminary research. Some evidence suggests that many doctors are now writing prescriptions prophylactically for patients with no known illness — as well as for themselves and family members — prompting at least one state pharmacy board to call an emergency meeting, scheduled for Sunday morning. The board planned to bar pharmacists from dispensing chloroquine or hydroxychloroquine for anyone other than confirmed Covid-19 patients without approval of the board's director.

A prolonged shortfall in supplies would likely have grave implications for people who depend on it — including Powers, who believes that she would not be alive today without the drug. "I guarantee you, it has saved my life," she said. "It's the only thing that's protecting my organs. There's nothing else." Like others, she hopes that pharmaceutical companies that manufacture versions of the drug will be able to quickly ramp up production — something several have already promised to do. In the meantime, Powers has a message for the American public — one echoed by most lupus doctors: When it comes to hydroxychloroquine: "If you don't need it, don't get it."

The origins of hydroxychloroquine can be traced back hundreds of years to South America, where the bark of the cinchona tree appears to have been used by Andean populations to treat shivering. European missionaries eventually brought the bark to Europe, where it was used to treat malaria. In 1820, French researchers isolated the substance in the bark responsible for its beneficial effects. They named it "quinine." When the supply from South America began to dry up, the British and Dutch decided to grow the tree on plantations.

Over time, synthetic versions were developed, including a drug called chloroquine, which was created in the midst of World War II in an effort to spare overseas American troops from malaria. As it turned out, troops with rashes and arthritis saw an improvement in symptoms after using this anti-malarial medication. After the war, a related drug was created, one with fewer side-effects when taken long-term: hydroxychloroquine. It went on to be used to treat many types of autoimmune diseases, including rheumatoid arthritis and lupus. The latter, which disproportionately affects women, used to cut lives short — typically from failure of the kidneys. Those numbers have been reduced with strict management of the disease, but the Lupus Foundation of America estimates that 10 to 15 percent of patients die prematurely due to complications of the disease.

"I am less concerned about a short interruption of a few weeks, but anything longer than a month puts patients at risk."

Dr Jinoos Yazdany

Right now, hydroxychloroquine is one of the few FDA-approved drugs for lupus, said Ashira Blazer, a rheumatologist and researcher at NYU Langone Health. The medication is a staple of lupus treatment because it has been shown to decrease symptom flare-ups, or "flares." Over time, this leads to better health and less organ damage, Blazer said. Patients who take hydroxychloroquine are less likely to develop diabetes, kidney disease, and early heart disease, among other benefits. Because so many lupus patients are doing well on hydroxychloroquine, Blazer said, "we don't want them to have to go without."

Jinoos Yazdany, a researcher and chief of the Division of Rheumatology at Zuckerberg San Francisco General Hospital, added that there is strong clinical trial data demonstrating that taking a group of lupus patients off of hydroxychloroquine results in lupus flares. "I am less concerned about a short interruption of a few weeks," she said in an email message, "but anything longer than a month puts patients at risk."

Whether or not that will happen is unclear, but Sparks said he has been receiving a raft queries from both lupus and non-lupus patients eager to know more about — and access — hydroxychloroquine: "Can I use this? Should I stockpile it? Can I get refills?" Sparks compares the current medication shortage to the ventilator shortage, where manufacturers make just enough of a certain supply to meet the demand. "We don't have stockpiles of hydroxychloroquine sitting around," he said.

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