Updated at 8:19 p.m. ET
A family of old antimalarial drugs — including one that some patients rely on to treat their lupus or rheumatoid arthritis — is becoming harder to get in the United States, pharmacists say, partly because of remarks President Trump has made, highlighting the drugs as a potential treatment for COVID-19.
"I feel good about it. That's all it is, just a feeling," Trump said during a White House briefing Thursday about hydroxychloroquine. "You're going to see soon enough." He again trumpeted his interest in the approach at a press conference Monday.
But health officials have been quick to warn that enthusiasm for such a treatment is premature. Big clinical studies of the drugs against COVID-19 are only just beginning, the head of the Food and Drug Administration has said; another study will begin in New York Tuesday. And there are some good reasons to think cell studies that look promising in the lab won't pan out in real patients, other infectious disease experts say.
Nonetheless, with all the buzz, American pharmacists are concerned about hoarding of the drug by people who don't have an immediate need.
Dentists and doctors writing prescriptions for themselves
"Our members are definitely seeing more demand for this medication and possibly some people trying to hoard the medication," says Todd Brown, executive director of the Massachusetts Independent Pharmacists Association.
According to Brown, it appears the hoarders include doctors and dentists who are writing prescriptions for themselves or family members.
"Pharmacists are seeing an increase in requests and prescriptions for them in instances where it's not clear why the patient needs it at this time," he says.
Brown is suggesting that pharmacists restrict prescription quantities and fill prescriptions only for patients with an active need for hydroxychloroquine.
In a statement, CVS Health said the company is "monitoring the global pharmaceutical manufacturing environment and working with our suppliers to ensure we can continue filling prescriptions for our pharmacy patients and plan members."
CVS says it has an adequate supply of hydroxychloroquine and is taking steps to make sure the supply remains stable. Some data show hospitals stocking up on the drug as well.
State pharmacy boards put the brakes on prescriptions
The National Association of Boards of Pharmacy says six states, so far, have taken steps to limit inappropriate prescriptions for hydroxychloroquine and preserve supplies for patients who take the medicine as approved. Those states are Texas, Louisiana, Ohio, North Carolina, Nevada and Idaho.
"Based on reports we see from the states, pharmacists have a fairly good idea that what they're seeing is prescribers prescribing for themselves and their families and stockpiling these medications rather than prescribing for patients," says Carmen Catizone, the executive director of the NABP.
If doctors are hoarding, some colleagues say that's unethical. Michael Barnett, a primary care physician and assistant professor at the Harvard T.H. Chan School of Public Health, says that even if the drug turns out, from the clinical studies now in progress, to be effective against COVID-19, it must be saved for those most in need.
"There are front-line physicians where, if this medication is actually effective or can be used to prevent coronavirus, they certainly could merit treatment with that," Barnett says. And, he notes, "we are very far from knowing whether it's effective in that manner. "
Still, Barnett says he can see why a doctor or nurse might say, "Hey, I can't get the masks or goggles or gowns I need to protect myself. Why not try this medication?"
Need a stable supply for non-COVID-19 patients
Barnett is sympathetic, but he points out that this powerful medicine has serious side effects, so it should not be taken unless there's a known benefit.
"Having sort of a free-for-all in terms of prescribing for oneself and just deciding that 'I'm going to grab some while I can' is the kind of mentality that can really undermine our efforts to actually have a concerted public health campaign against this disease," Barnett says.
More immediately, there are the patients with lupus and rheumatoid arthritis who take hydroxychloroquine daily to reduce swelling and rashes. Dr. Jeff Sparks says his patients at Brigham and Women's Hospital were already fretting about having enough medicine on hand if stores close or it's hard for them to go out. And then the president began calling the drug a game-changer.
"The entire last week seemed to be filled with a lot of anxiety about what to do about medications and, in particular, patients asking for refills for hydroxychloroquine," Sparks says.
Some patients are already being told they can't get the medication or can get only a limited supply. The Lupus Foundation has asked congressional leaders to ensure supplies for lupus patients.
Sparks says hydroxychloroquine is what keeps many of his patients stable.
"So even if patients are doing well, stopping the medication could cause them to flare, which means that they then need to go on other immunosuppressants ... or even get admitted and potentially get exposed [to the coronavirus] in the clinical setting," Sparks says.
He added that hydroxychloroquine, like ventilators and masks, is a medical resource the country needs to learn to manage more carefully.
This story is part of a reporting partnership that includes WBUR, NPR and Kaiser Health News.
ARI SHAPIRO, HOST:
There is no vaccine for the coronavirus, but medical professionals are hoping that some drugs already in use for other diseases might help those who are ill from COVID-19. One such drug is called hydroxychloroquine. President Trump has tweeted and spoken about it, as he did last Friday.
(SOUNDBITE OF ARCHIVED RECORDING)
PRESIDENT DONALD TRUMP: It may work, and it may not work. I feel good about it. That's all it is; just a feeling.
SHAPIRO: At that same briefing, infectious disease expert Dr. Anthony Fauci cautioned that it really needs a methodical clinical trial first. This talk is already causing problems. And to explain, Martha Bebinger of WBUR in Boston joins us now.
MARTHA BEBINGER, BYLINE: Hi, Ari.
SHAPIRO: What is this drug? And what's it used for?
BEBINGER: Hydroxychloroquine, Ari, is part of a long-standing group of anti-malaria drugs. There's also a version that's now a daily treatment for people with lupus and rheumatoid arthritis. It eases joint swelling and rashes. As you mentioned, there is some preliminary research that shows hydroxychloroquine may be effective to treat COVID-19, but these are not based on robust clinical trials, the kind you need to prove that a drug is safe and effective for a new disease. And there can be some bad side effects with this drug - in the extreme, possibility of heart attack. So scientists stress that we need FDA-level research and approval before we start using this drug to treat COVID-19.
SHAPIRO: But since President Trump is already talking about it, you have people trying to get it for themselves. Are supplies robust enough to handle that demand?
BEBINGER: Well, I'm hearing from patients with rheumatoid arthritis and lupus who say they cannot fill their prescriptions. Pharmacists, Ari, say the main reason, it appears, is that doctors, dentists and nurse practitioners are prescribing the drug for themselves and family members - basically hoarding it.
SHAPIRO: What does that mean for the patients who have lupus or rheumatoid arthritis who are already on the drug?
BEBINGER: Well, doctors say if their patients can't get this medicine, then they won't be able to manage those diseases. Patients could have to try out alternative drugs. But if they have disease flares, they may need to be hospitalized. And, of course, that's a really bad idea right now, when we need more hospital beds to deal with the pandemic. One doctor told me that he spent most of last week fielding calls from anxious patients who wanted to see if they could get longer prescriptions or just wanted some assurance about what will happen if the drug runs out.
SHAPIRO: Is there anything being done to protect the supply?
BEBINGER: Yep, some of the leading pharmacy chains like CVS say they are aware of the problem and that they are preserving supplies. Now, today we learned that in six states, boards of pharmacy - they're essentially the state regulators. They're telling pharmacists that they may have to limit prescriptions to make sure that the - to make sure there's enough supply. And they also may - they also really need to be sure that they're only filling prescriptions for legitimate patients, not a health care worker, their family or friends.
SHAPIRO: Go ahead. Yeah.
BEBINGER: Ari, can I add one more thing to that?
BEBINGER: In a separate move today, the FDA boosted the supply of hydroxychloroquine and related drugs by lifting import restrictions on a pharmaceutical manufacturer in India that makes them. Now, that might sound great, but some doctors are worried because this is a manufacturer the FDA had cited for serious quality lapses and said it could not sell in the U.S. But now it can.
SHAPIRO: Given all the worries you described about the supply, why would any doctor write themselves a prescription for this?
BEBINGER: Well, as I mentioned, there is some evidence that hydroxychloroquine might be used to help fight COVID-19. It's not approved for that purpose. But in this moment, when doctors can't get enough masks and gowns, they might say, I need to have this medication on hand in case it helps. They're thinking of it as a tool so that they can stay healthy and deal with the pandemic. But the problem with that is that if we have a limited supply of this drug, medical ethicists say it must go to the people most in need, not to the people who have easiest access to it, meaning the doctors and other prescribers who can write scripts for themselves.
SHAPIRO: That is Martha Bebinger, health reporter for WBUR, NPR and Kaiser Health News, speaking with us from Boston.
Thank you, Martha.
BEBINGER: Thank you, Ari. Transcript provided by NPR, Copyright NPR.