Hydroxychloroquine in short supply.. 'Angry, disappointed and scared,' say lupus patients.

Lupus patients from around the country this week voiced frustration at President Trump’s latest endorsement of hydroxychloroquine, a drug they say they desperately need and that has been in short supply since Trump began touting it as a shield from coronavirus.

“I’m angry, disappointed, and scared,” said Jen Incandela in South Barrington, Illinois, who has fought lupus for eight years and has been unable to refill her prescription of hydroxychloroquine since April 4.

Trump announced Monday that he was taking the drug, despite warnings of side effects and a lack of evidence of its efficacy. He touted its use against COVID-19 as early as March 19. State and local governments, among others, started snapping up the drug. It hit the Food and Drug Administration’s list of drugs in shortage on March 31, and supplies never caught up with demand, even after the initial explosion of orders eased.

Based on member purchase data shared by Vizient, a group purchasing organization that serves about 3,000 hospitals in the U.S., the demand of hydroxychloroquine in April was about 17 times bigger than in January. Although supply expanded during the period, volume available last month was only about half of units ordered.

Life without hydroxychloroquine is hard for lupus patients, who usually suffer from joint pain, severe fatigue, and rashes.

Jamie Manson, a 43-year-old lupus patient in Long Island, recently managed to find a 90-day refill from a local CVS but worried that “someone might try to steal it” or “could break into my house looking for my hydroxychloroquine.”

“ We have to have a president that is not putting out misinformation,” Manson said.

Trump continued to defend his position on the drug after his Monday remarks.

But Jennifer McCollom, who’s struggled with lupus for eight years and couldn’t get her medication for more than two weeks, said the drug she needs “should not be used as a prophylactic.”

“It shouldn't be hoarded away from people who are sick like us,” said McCollum, 48, of Thornton, Colorado. “It feels to me like survival of the fittest right now.”

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