Winnipeg lupus patients on edge amid shortage of drug at centre of COVID-19 trials

An unproven claim a drug used to treat lupus can combat COVID-19 is causing an increase in prescriptions of the drug, creating shortages and putting Winnipeggers who rely on it on edge. 

Elena Anciro was diagnosed with lupus eighteen years ago and relies on taking hydroxychloroquine daily in order to function without being in intense pain, and to reduce the flare-ups that make it hard to get out of bed.

"People have called this medication 'lupus life insurance,'" Anciro said. "It is vital."

While the drug was created in the 1950's to treat malaria, it is commonly prescribed to control inflammation and pain for those with lupus and rheumatoid arthritis. 

However, it came to the forefront in the fight against COVID-19 thanks to a famous tweet by U.S President Donald Trump.

The tweet sent earlier this month heralded it as a possible way to treat COVID-19.

It sent people scrambling to get their hands on the drug, causing a spike in prescriptions in Manitoba and a dire warning from the province's health regulators — it was being over-prescribed and now they are facing "serious shortages." 

"Due to the recent yet-to-be-proven claims of effectiveness of hydroxychloroquine sulfate against COVID-19 and the growth in prescribing for it, we are now faced with a very serious shortage (and some brands, outages) of the product," read a March 26 notice co-authored by the College of Physicians and Surgeons, Nurses and Pharmacists.

"This presents very serious challenges for long-term continuity of care for patients suffering from rheumatoid arthritis and lupus."

Manitoba reports spike in prescriptions of hydroxychloroquine

According to the notice there has been a "significant increase" in Manitoba over the past two weeks in the number of prescriptions written and dispensed for hydroxychloroquine and Kaletra — an antiretroviral used to treat HIV.

As part of mandatory reporting requirements, a drug shortage report was given to Health Canada on March 19 by the drugs' manufacturer, Apotex Inc. It cited the shortage was due to "demand increase" for the drug.

Anciro is just one of the 15,000 Canadians who have lupus, an autoimmune disease that cause severe inflammation of the joints among other symptoms. A further 300,000 Canadians have rheumatoid arthritis, many of whom also rely on the drug to function in their lives. 

"When Trump announced that and this all happened, to have to not only worry about getting this sick from this highly contagious virus, [but also] having to worry about the pills that allow me to be well, is very stressful," said Anciro.

Stephanie Corbett is another Winnipegger who takes hydroxychloroquine daily to treat lupus. The mother of five was diagnosed with lupus nine years ago and says without the drug, she'd likely end up in the hospital.

So far, both have been able to fill their prescription without any issues. Both say it would take weeks for the drug to leave their system, but when it does, it'll be devastating.

"It will be life-threatening for people like me," said Corbett. 

"I'll end up in the hospital. The rashes will start. The pain will get worse. You know, every symptom will start rearing."

Clinical trial at U of M

While a clinical trial is currently underway at the University of Manitoba to see if hydroxychloroquine can be repurposed to reduce the severity of COVID-19, there are currently no approved treatments or vaccines for the virus.

Virologist Jason Kindrachuk says the key message for Manitobans is they need to wait and see the outcomes of these trials before jumping to conclusions.

"The data is simply not there. I'm not arguing for or against it. I'm just saying that right now we don't have data to support that it is actually truly beneficial for patients," said Kindrachuk, an associate professor at the University of Manitoba and Canada research chair in emerging viruses.

He says the scientific community needs to do a better job of communicating to the public the proven benefits of a drug.

"Our biggest concern is that we don't want to give people false hope if we truly don't know whether or not there's a benefit, because, again, we can have a position where people are demanding hydroxychloroquine," Kindrachuk said 

CBC reported last week that medical regulators across the country were seeing overprescription of drugs such as hydroxychloroquine and azithromycin, another drug being studied as part of the fight against COVID-19.

Regulators reported an increase in orders for the drugs from doctors who list it as "for office use." These requests are typically from doctors who want to keep a supply on hand for future use, raising concerns that stockpiling was occurring. 

The Manitoba College of Physicians and Surgeons cautioned its members against stockpiling, warning that it may be reviewing prescriptions of these drugs and "prescribers must be able to demonstrate good medical care."  

"These drugs have an intended use and prescribing these drugs as a precautionary measure leads to drug shortages and is compromising care for other patients," the College wrote on Thursday.

Dr. Roussin talks about a clinical trial looking at using malaria drug to treat COVID-19

5 years ago

Duration 1:16

Chief provincial public health officer Dr. Brent Roussin talks about a new Manitoba clinical trial looking at the effectiveness of using hydroxychloroquine, which has been used for malaria and other conditions, to treat COVID-19.

A warning was only given to nurses from their regulator, warning them not to prescribe Hydroxychloroquine or azithromycin to treat COVID-19.

"Nurses have an obligation to ensure that their practice and any treatment they prescribe is evidence-informed," wrote the College of Nurses. 

Both Corbett and Anciro say they understand Manitobans are gravitating to the drug because they are scared. 

"But as of right now, there is nothing saying that the public should to be taking it," said Corbett.

"So leave the drug for the people with the diseases that are taking it and that need it to survive."