It had been 90 days since Vinita Haroun last refilled her prescription of hydroxychloroquine, so it was time to call the pharmacy for her next three-month supply.
The 38-year-old Oakville, Ont., resident has been taking this drug every day for the past decade to treat her lupus. She says hydroxychloroquine helps her to remain stable by preventing flare-ups such as rashes on her nose, joint pain and fatigue, and limits the amount of steroids she also needs to take as well as their accompanying negative side effects.
But it wasn’t the usual pharmacy call. This time, Haroun says the pharmacist told her they had run out of the drug and were unable to order more.
“There’s a lot of evidence that when you remove that drug, there’s some very bad outcomes that can happen. So it’s a very scary prospect of going from a point where I’m pretty stable to then somebody telling me that they’re going to take that away from me.”
Haroun says the pharmacist suggested she call other pharmacies to ask if they had the drug in stock. After spending the entire day on March 21 calling a dozen pharmacies, she says she was finally able to get a 30-day refill in Hamilton the next day.
“In the 10 years that I have been taking this drug on a daily basis, I have never had a problem getting a refill or getting a prescription,” she said.
But now, Haroun and other lupus patients like her are being affected by a shortage of hydroxychloroquine — caused, experts say, by the drug being used to treat COVID-19, with little evidence behind it.
Barry Power, an Ottawa-based spokesperson for the Canadian Pharmacists Association (CPA), said there is now a shortage of the drug after U.S. President Donald Trump touted the benefits of hydroxychloroquine, especially when combined with azithromycin, in treating the novel coronavirus disease.
The U.S. Food and Drug Administration (FDA) also recently approved the use of the drug to treat hospitalized COVID-19 patients under an emergency order.
Hydroxychloroquine is prescribed for lupus as well as for rheumatoid arthritis. It’s an important enough medication for these conditions to appear on the World Health Organization’s (WHO) list of essential medicines as a treatment for rheumatoid disorders.
Hydroxychloroquine is also used to treat some forms of malaria.
And lately, it’s being explored as a possible treatment for COVID-19, but the research is relatively new. However, this is affecting patients like Haroun.
“There are a number of trials that are ongoing with hydroxychloroquine and patients with COVID-19,” Power said.
“If they do show that it does have a benefit to people, then it will be used more in people who have COVID-19. That would mean that somebody who uses it for conditions like arthritis or lupus would eventually run out of their supply and need to be changed to a different treatment.”
Despite a presidential endorsement, health bodies say there’s not actually much evidence so far that this drug helps patients with COVID-19.
A study of 30 patients in Shanghai found little difference between patients who had received hydroxychloroquine and those who hadn’t, although the study authors urged further research.
Two small French studies found a benefit for patients treated with both hydroxychloroquine and azithromycin, though these studies did not include a control group — something considered essential before drugs are approved for broad use in patients. The findings of these studies have also been the subject of much debate among researchers in the field, some of whom question the methodology.
“So that we’re clear, there is no proven, effective, therapeutic or drug against COVID-19,” said Dr. Mike Ryan, executive director of the WHO’s health emergencies program, at a press conference Monday. While some preliminary studies have shown some impact, he said, there are still many unanswered questions and much research to do before this becomes an accepted therapy.
“The dosages of those drugs, when they’re given, to which patient, at what stage of the disease, has not been standardized,” he said. “And we’ve never had a comparison group where we’ve had a randomized approach to treatment with the drug or not treatment with the drug. “
Power says the CPA agrees.
“They would just look at whether or not it impacted the amount of virus in the system. People have taken that to mean that it will prevent COVID-19 infections, which is not correct.”
Both the WHO and the CPA have expressed concern that overblown statements about the use of hydroxychloroquine to treat COVID-19 could reduce the supply for people who need it for other illnesses.
“It’s also very important that those drugs are very, very needed for the treatment of other diseases and that we don’t see a situation where people who need those drugs for the treatment of other diseases cannot access them because people are just buying them up and using them,” Ryan said.
Some pharmacies in Canada, though, have a small amount of hydroxychloroquine left. They are saving it for regular patients who need it for chronic conditions like rheumatoid arthritis and lupus, Power said.
In Quebec, for example, the province’s National Institute of Excellence in Health and Social Services (INESSS) has ordered remaining stocks of hydroxychloroquine at its pharmacies be used for patients with lupus and other such conditions.
For the majority of patients currently treated with hydroxychloroquine, though, a few weeks without the drug does not put their life in danger, according to an emailed statement from INESSS.
The drug can stay in the blood for a number of weeks after treatment stops, and other drugs given at the same time, such as methotrexate or biologic drugs, will keep the disease under control during this time and can be adjusted as needed, the statement said.
But the supply problems are global, and manufacturers are having trouble keeping up with the increased demand, Power said.
Right now, the basic ingredients for hydroxychloroquine are being made under the assumption that only rheumatoid arthritis and lupus patients are using the finished product, he said.
If the demand for hydroxychloroquine goes up, manufacturers would need to start by making more of these raw ingredients before they can even think about producing finished hydroxychloroquine tablets, so the whole production chain would need to be scaled up from start to finish.
“There is still some inventory out there, but it is considered to be pretty much out of stock from the manufacturer,” Power said.
Although rheumatoid arthritis and lupus patients like Haroun want medical experts to find a treatment or vaccine for COVID-19, she said it is not fair if it is at the expense of other people.
“You’re taking away treatment that’s preventing serious outcomes,” Haroun said.
“I’m not just talking about fatigue. I’m talking about kidney failure. I’m talking about heart disease. I’m talking about strokes. These are real things that are going to happen to these patients if hydroxychloroquine is taken away.”
Questions about COVID-19? Here are some things you need to know:
Health officials caution against all international travel. Returning travellers are legally obligated to self-isolate for 14 days, beginning March 26, in case they develop symptoms and to prevent spreading the virus to others. Some provinces and territories have also implemented additional recommendations or enforcement measures to ensure those returning to the area self-isolate.
Symptoms can include fever, cough and difficulty breathing — very similar to a cold or flu. Some people can develop a more severe illness. People most at risk of this include older adults and people with severe chronic medical conditions like heart, lung or kidney disease. If you develop symptoms, contact public health authorities.
To prevent the virus from spreading, experts recommend frequent handwashing and coughing into your sleeve. They also recommend minimizing contact with others, staying home as much as possible and maintaining a distance of two metres from other people if you go out.
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