While doctors removed a rare parasite growing on Cassidy Armstrong’s liver before it killed her, she doesn’t know if she’ll receive the medication she’ll need for the rest of her life.
Her temporary supply of the drug is running out and she’s still waiting for Health Canada to provide long-term access.
“I just had a major surgery a couple months ago and it’s difficult to sleep at night,” she said. “It’s difficult to heal, not knowing whether the medication that’s going to stop this thing from spreading to other parts of my body is available or not.”
A parasite called Echinococcus multilocularis was growing inside her for more than a decade.
Fewer than 20 Canadian cases have been found to date. Doctors initially mistook the 10-centimetre growth on her liver for a cancerous tumour.
To prevent the parasite from regrowing, Armstrong was prescribed a drug called albendazole, a common medication used to treat several tropical parasites. While albendazole has been on the market in other countries since 1975, it is not approved in Canada.
Armstrong is recovering in Edmonton and receiving the tablets on a compassionate basis from other patients’ supplies, but she doesn’t yet have a steady supply.
She has enough pills to last her until the end of February. Her doctor has applied to the Health Canada for access to the drug through a special-access program.
Physicians have been frustrated by the lack of access to albendazole and other rare disease medications in Canada for decades.
No economic incentive
The J.D. MacLean Centre for Tropical Diseases, located at Montreal’s McGill University, must apply for medication once a week through the federal Special Access Programme, according to associate director Dr. Brian Ward.
In many cases, it’s for patients who need immediate access to survive, he said.
Because there are so few individuals in Canada with maladies requiring treatment with albendazole, there is no economic incentive for pharmaceutical companies to bring the drug to the Canadian market.
Ward said it was a similar situation with ivermectin, a Nobel-prize winning drug that was inaccessible in Canada until 2018. For years, he would have to apply for the drug to treat patients who picked up a worm while walking on tropical beaches.
“You have blisters and red, incredibly itchy, areas and the treatment is simple, safe, licensed in virtually every other country in the world,” he said. “But ivermectin was unavailable in Canada for decades … not because it’s a dangerous drug, but because only 25 people in Canada need it every year.”
Ivermectin came to market in Canada eventually.
But not albendazole.
Ward said he convinced regulatory agencies to waive the fees for licensing albendazole, but the company that makes it, GlaxoSmithKline, couldn’t justify the cost to stock it, he said.
“It was an eight-year project that failed,” Ward said. “It still makes me really angry that it failed.”
Still no solution
In 2019, 161 people received albendazole through the special-access program, according to Health Canada.
It remains one of several medications on the World Health Organization model list of essential medicines unavailable in Canada.
“It’s one of the most basic drugs for global health,” said Adam Houston, a lawyer and PhD candidate in health law at the University of Ottawa.
“When you can get better access to a drug in Zimbabwe than you do here, that says something,” he said.
Advocacy groups have called on the Canadian government to develop a rare-disease strategy. The 2019 federal budget set aside $1 billion to establish a program by 2022, which would help people receive necessary treatment for rare disease.
For now, Armstrong’s doctor will have to reapply every six months to maintain her treatment.
She warned that while her parasite is rare in Canada, it has become established in Canada’s wildlife population and will continue to spread to other people.
The province has become a hotspot for the parasite with 15 documented human cases, and it remains difficult to diagnose with few visible symptoms until it grows to a potentially deadly size.
“We need to come up with a better system,” she said. “There will be more cases, so we need to make access to this drug easie.”