Trump saying he’s taking hydroxychloroquine has lupus patients thinking: ‘Here we go again’

When Kayla Ramsey-Aquino heard President Donald Trump say this week that he was taking an anti-malaria drug to protect himself from the coronavirus, she thought, “Here we go again.”

An increase of prescriptions flooded pharmacies after Trump touted the drug hydroxychloroquine in March, and people who take the medication to treat autoimmune conditions like lupus and rheumatoid arthritis reported that they struggled to get their prescriptions filled.

Even though the Food and Drug Administration, scientists, leading medical associations, and academics have cautioned against using this drug as a preventative treatment for the coronavirus, saying it could have deadly results, Trump has doubled down. And people like Ramsey-Aquino have been left frustrated, and worried that there could be more shortages of a medication they rely on.

» READ MORE: Hydroxychloroquine is not proven to work against the coronavirus. Why not just try it?

Cindy Messerle, CEO of the Lupus Foundation Philadelphia Tri-State Chapter, said she hadn’t heard of patients reporting shortages in the last couple of weeks. But she said Trump’s comments this week were making everyone nervous again.

“As an organization, we are coming out of this, almost breathing a sigh of relief, ‘OK, things are settled.’ To have it be brought up again is challenging,” Messerle said. “You’ve got a population that relies on this drug to get through the day."

Ramsey-Aquino has been taking hydroxychloroquine since 2006, when she was diagnosed with the autoimmune disease lupus. Aquino described hydroxychloroquine as “the National Guard for my body.” Lupus causes her immune system to attack her own tissues and organs, and hydroxychloroquine acts as an anti-inflammatory.

“For the rest of lupus patients, having trouble accessing medicine was slowing down, the hydroxychloroquine talk was finally over. I thought, ‘Everyone is able to get their medicine. No one will have to ration or go without,’ and then this popped back out," said Ramsey-Aquino, 35, of Northern Liberties. “I have enough medicine for three months, but I worry about others.”

The Food and Drug Administration issued a safety alert April 24, cautioning that the drug should only be used as a treatment for the coronavirus in a hospital setting or clinical trial, and that the agency has received reports of serious side effects, especially for those with heart rhythm problems. Physicians have also warned that taking this without a doctor’s supervision could have deadly results.

» READ MORE: Drug promoted by Trump as coronavirus ‘game changer’ increasingly linked to deaths

“We know — quite factually and evidence-based — that it does a lot of clear good for people with these autoimmune diseases, vs. a hypothetical benefit that is not evidence-based for people with COVID-19,” Jules Lipoff, a physician and assistant professor of clinical dermatology at the University of Pennsylvania Perelman School of Medicine, said in March.

Deb Jepson, 56, of Fairless Hills, has lupus and has been taking hydroxychloroquine daily for almost two decades. She has enough medication left for two months, but said she has heard stories about others who weren’t as lucky. She is already thinking about when it will be time to refill her prescription and has decided she’ll try to get it earlier, she said, “just so I can have peace of mind."

The first time Trump mentioned hydroxychloroquine, the drug Meredith Maciolek has been taking for 20 years to treat lupus, she sprinted to her computer and hoped she would get a refill in time. The 44-year-old from Plymouth Meeting recalled how it seemed like everyone was out of supplies. She wasn’t able to get her medication.

She didn’t know when it would be back in stock, so she started rationing her pills. For the next seven days, she had panic attacks. She said she kept thinking: How long do I have until the pain gets so bad that I can’t function? Will I be able to bounce back?

» FAQ: Your coronavirus questions, answered.

In early April, she was able to fill a 90-day prescription. She’s working through those pills now, and hopes Trump’s latest comments don’t affect her and others when they go to fill their prescriptions again.

“It was reckless, and it caused a lot of panic across the lupus community,” she said of Trump’s comments. “It’s hard enough living with a disease that doesn’t make you look like you have a disease, so nobody believes you when you’re sick anyway. But to have the fear of it overtaking you is really frightening.”