Hydroxychloroquine is the most popular drug to treat the potentially disabling autoimmune disease.
President Trump first mentioned it last Thursday and said it had tremendous promise in fighting coronavirus. From that moment, things changed for many people who take the drug to control their lupus symptoms.
Terry Edwards takes hydroxychloroquine to maintain some control of her lupus, and has for 15 years. The drug is also known by the brand name Plaquenil.
By whatever name, for the 1.5 million people in the U.S. who have lupus, it is a powerful drug that allows them to lead normal lives.
"There is a large body of evidence that shows this medicine is life-saving," said Dr. Rosalind Ramsey-Goldman, rheumatologist and researcher for Northwestern Medicine.
Ramsey-Goldman has been on staff at Northwestern since 1991 and is a longstanding member of the Lupus Society of Illinois' medical advisory board.
"We are in very challenging times right now, where our physicians are trying to decide what's the best treatment for the patients that we are caring for already, as well as answering the challenge as a public health crisis that's ongoing with where that might intersect with our routine care of our patients," she said.
At that intersection, for Edwards and other lupus patients, was finding their local pharmacy to be out of the drug they depend on, apparently because some doctors started prescribing it to healthy people in case they were to come down with coronavirus.
"I think it's very unethical for doctors to do that unless there's a real reason for it," Edwards, a west suburban resident said.
"I would say that it would be very hard to justify giving someone a prescription for a medication just in case," said Dr. Peter Angelos, medical ethicist at the University of Chicago Medical Center. "It's sort of like saying, you know, I have a ventilator in my garage and I'm just going to hold onto it, just in case I need it, as opposed to bringing it to the hospital and making it available to someone who needs it."
"I have heard, anecdotally, that people are doing this," Ramsey-Goldman said. "I have heard patients are requesting that this be done for their family members. I understand why they would want to do something, but please rely on the scientists."
And despite there being no U.S. clinical testing of the drug for use on coronavirus or government endorsement of its use for COVID-19, President Trump continues to tout it, including Monday, suggesting it is a miracle drug for those with coronavirus.
"A gentleman, they thought he was not going to make it," Trump said. "He said goodbye to his family. They had given him the drug just a little while before. But he thought it was over. His family thought he was going to die. And a number of hours later he woke up, felt good."
"I think that good ethics starts with good medicine, and good medicine starts with some level of science to guide the decisions we make," Angelos said.
"Please understand we do want to do the right thing. We don't want to withhold treatments, but we don't want to harm you," said Ramsey-Goldman.
"I don't think I'm more or less valuable than anyone," Edwards said. "But I think the medical community should be safeguarded. The state should be careful to make sure that people who need this medication should still have access to it."
Edwards finally found a 30-day supply of her prescription at a small grocery store pharmacy. She and many others wonder what will happen in a month.
Monday night, in response to the I-Team's report, Walgreens officials said the company has issued new guidelines to its pharmacies for sale of the Lupus drug.
Now Walgreens will limit new prescriptions for the drug to a 14-day supply; and a 30-day limit for customers with prior prescriptions.
Ninety-day prescriptions will be cut back to 30 days, all aimed at keeping supplies in stock.