Amid hydroxychloroquine hopes, lupus patients face shortages

March 23, 2020|Dermatology News

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.

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.

Demand is surging. Antonio Ciaccia, the chief executive of 46brooklyn Research, a non-profit drug pricing research organization, says that the combination of new studies and interest from the Trump administration created “a magnetic pull” for people, even for those who don’t currently have an illness. Ciaccia, who has been communicating with industry contacts and hospital pharmacists, says new demand is coming from doctors writing prescriptions for themselves, their family members, and their colleagues. Ciaccia declined to say whether a physician should or should not self-prescribe. But he does have an opinion on family members and colleagues filling prescriptions without any symptoms or known exposure to the virus. “I would throw that in the bucket of totally unethical,” he said.