INDIANAPOLIS — Indiana hasn’t yet taken any action to protect existing prescriptions for two drugs rumored to be possible treatments for COVID-19, even as neighboring states report doctors self-prescribing to hoard the medication for themselves.
Hydroxychloroquine, known by the brand name Plaquenil and used to treat chronic ailments such as lupus or rheumatoid arthritis, and the anti-malarial chloroquine aren’t proven treatments for the coronavirus, which has no known cure or treatment.
But after President Donald Trump touted the drug's potential on Twitter, demand for the drug skyrocketed to the point that people with debilitating pain can’t access their prescribed medications.
After the birth of her daughter in 2018, Angela started having extreme joint pain to the point where lifting her newborn became unbearable.
“I couldn’t lift her out of her crib and nurse her at night. I would just sit and cry,” said Angela, who asked her full name to be withheld to reduce the likelihood that someone would target her family to try and steal the medication. “It was debilitating.”
A rheumatologist diagnosed Angela with rheumatoid arthritis and prescribed Plaquenil, a drug she said she has used since November 2018.
Angela takes two Plaquenil daily, combined with another drug, to manage her pain and function as a mother of two. Like many Hoosiers, Angela’s older child, in preschool, has started e-learning at home after his school closed.
Before this week, Angela planned to weather the storm at home and didn’t worry about her supply. But on March 21, Trump tweeted about the drug and reports trickled in about the shortage.
“It’s never been a problem to get it in the past,” Angela said, adding that pharmacists would give her up to 180 pills, three months’ worth, at one time. “I heard President Trump’s statements about the drug and so I started becoming a little concerned … I was hearing from Facebook groups that some of the people that were in those groups that had rheumatoid arthritis and other conditions were having a lot of trouble getting their prescriptions filled now.”
With one month of pills left, Angela called her rheumatologist with concerns about the supply after a call to the pharmacist. She said she was told to reduce her daily dosage to one pill and that her next refill would also be reduced to one pill daily.
“I asked them, 'Would you say this because that’s what’s best for my treatment or would you say this is due to the shortage?'” Angela said. “She said, very carefully … 'I think that your symptoms will still be managed, and it’s also because of the shortage.'
“That just left me feeling a little bit frustrated because … I felt like the decision was being made because of the pandemonium.”
Angela said she understands that prescribers might have other concerns — maybe thinking she’d try to sell the drugs and profit off of the “cure” or use the pills to try to treat potential COVID-19 symptoms herself.
“That was not my intention, I just want to make sure that I have them through this craziness,” Angela said.
A nationwide concern
Angela isn’t alone in her troubles.
In Illinois, Garth Reynolds, the executive director of the Illinois Pharmacists Association, told ProPublica that Illinois pharmacists had received “questionable prescriptions.”
“We even had a couple of examples of prescribers trying to say that the individual they were calling in for had rheumatoid arthritis,” Reynolds told ProPublica, adding that pharmacists suspected that wasn’t true. “I mean, that’s fraud.”
The association issued a bulletin, saying it was “disturbed by the current actions of prescribers” and encouraged members to file complaints.
But the drugs haven’t received any approval from the Food and Drug Administration as a treatment for COVID-19, despite the surge in purchases, though clinical trials are accessing its effectiveness.
The Lupus Foundation of America urged the White House Task Force to ensure patients using the drug would continue to have access throughout the COVID-19 pandemic.
“We are concerned that increased demand for these drugs attributed to COVID-19 has exacerbated their already limited availability for patients who rely on them to meet their medical needs,” the letter, addressed to Vice President Mike Pence, said. “We urge you to work with us and the broader health care community to help ensure continued availability of these drugs for the patients who are maintained on them to avoid disability, illness and even early death.”
Other states have acted on the potential shortage by limiting prescriptions, including Texas, Ohio and West Virginia.
Kentucky's Board of Pharmacy advised pharmacists to use their professional judgement to evaluate a suspicious prescription for hydroxychloroquine or chloroquine.
"Like always, the pharmacist must use professional judgement to determine if a valid patient-prescriber relationship exists and keep in mind if there is enough of the drug in stock to treat RA patients who receive it on a regular basis when deciding whether or not to dispense the prescription," their website said.
Treatments for Hoosiers
In Indiana, State Health Commissioner Kris Box said the state had a research team and was working on issuing guidance related to the issue on Wednesday at a news conference.
“It’s important that (Hoosiers) are still able to get (hydroxychloroquine and chloroquine). There’s very, very limited data about the effectiveness of those medications with regards to COVID-19,” Box said. “(Guidance) should be coming out very soon.”
Untreated autoimmune conditions, such as lupus or rheumatoid arthritis, can be debilitating short-term or even potentially deadly. The medication used to treat those conditions can have side effects nearly as catastrophic, such as blurry vision, numbness or difficulty breathing.
The medications, as well as chloroquine, are available only with a prescription.
In the meantime, Hoosiers like Angela will have to wait and see.
“I want to make it very clear that if this is a drug that can save people’s lives, I am more than happy to make the sacrifice but I didn’t feel that was the case,” Angela said. “If it was a situation where it’s a wartime mentality — where we’ve got to help each other out — I’m more than happy to do that. But it didn’t seem like it was and that’s where my frustration lies.”