Albertan with rare blood cancer calls on Health Canada to approve life-saving drug

An Albertan living with a rare blood cancer says a shortage of the drug that saved her now threatens her chance of survival.

An Alberta woman living with a rare form of blood cancer is calling on Health Canada to approve a new form of a drug that saved her life, as a worldwide shortage of the medication now lowers her chances of survival.

Zeta Charania is a 60-year-old Edmonton woman who lives with myelofibrosis.

Her condition, where too many blood cells are produced, worsened when she became severely anemic, and the build-up of scar tissue in her bone marrow threatened her chances of living much longer.

“My doctor originally gave me anywhere from 12 to 18 months to live,” said Charania.

“My new hematologist suggested I try this new medication.

“I could hardly go outside or even walk up the stairs without huffing and puffing before I took this drug, but 10 years have gone by now, and I’m still alive. It’s been a life-saver for me.”

That medication—interferon, better known by its drug name, Pegasys—is a needle injection used to treat patients like Charania who suffer from myelofibrosis.

The incurable cancer has an incidence rate of just 2.05 new cases per 100,000 Canadians, and currently there are between 1,400 and 2,177 estimated people living with the disease countrywide, according to the latest Blood Cancer Research Survey.

But demand for Pegasys has increased significantly since its sole manufacturer, Roche Diagnostics, produced a final batch of the drug in 2017 to make way for an improved medication called Besremi.

The shortage has come about because the licence to make the drug has passed from one pharmaceutical company to another, and there are delays while the new company sets up its manufacturing processes.

The final batch produced by Roche was expected to last up to 10 years, and it was Charania’s hope that Health Canada would approve its new version, but supplies are running out, and she will soon have to pay out of pocket to survive.

“I only have a few weeks left. I don’t know what’s going to happen after that,” Charania said.

“We are hoping for the newest interferon to be approved by Health Canada; it is approved in the United States, U.K., most of Europe, all over the world, but not in Canada.”

The cost to purchase the drug south of the border is very high.

“It’s very scary. I might be making a trip to the United States to see hematologists, but the new one there, it’s prohibitively expensive; I think it’s over $200,000 a year there, and in Alberta, so far, we’ve been lucky enough to get Pegasys for free,” Charania said.

Calgary hematologist supports blood cancer patients through challenges

Dr. Sonia Cerquozzi is a hematologist at the University of Calgary who supports several patients through blood work, transfusion support and other challenges of myelofibrosis.

She says treatments like interferon are much-needed for some patients but it varies depending on the progression.

“There’s lot of symptoms; the issue and the challenge in that is that all patients don’t present the same, and we tend to decide on patient treatment based on symptoms, including improvements, which depend on whether blood counts are low or not,” she said.

Cerquozzi says Canada’s smaller population compared to other larger European countries or the United States often leads to delays in clinical trials or approval of drugs.

“This certainly is something that we are very aware of locally and worldwide; it’s been something I’ve discussed with all of my patients who heavily rely on some of these drugs which have been effective,” she said.

“We are working as an MPN group alongside various hematologists who have been in contact with Health Canada, and our access to Besremi has been very limited, only through clinical trials in Canada. So the process right now is still to be determined as we work to assess our shortage.”

Health Canada approves different drug following successful clinical trial

In November 2024, Health Canada approved momelotinib (Ojjaara) for the treatment of myelofibrosis patients who have moderate to severe anemia.

The different drug is welcome for some patients, but Charania worries it won’t work for her on its own.

“Interferon helps my body make its own white blood cells and my immune system fight cancer, so getting that little extra injection really makes all the difference for me,” she said.

Michelle Horn, interim country medical director for GSK Canada, says the approval decision for Ojjaara was supported by findings from three clinical trials in 130 anemic myelofibrosis patients, finding that 25 per cent reported a symptom score of reducing by at least 50 per cent.

She says 30 per cent of patients who received Ojjaara were able to receive fewer blood transfusions within 12 to 24 weeks, while 35 per cent eventually required no blood transfusions during that time.

“Treatment options for myelofibrosis-related anemia have been limited. We are proud to offer this treatment alternative for Canadian patients to address this critical unmet need and other myelofibrosis symptoms,” Horn said in a new release.

“With most myelofibrosis patients becoming anemic over time, Ojjaara’s approval represents a significant milestone to improve the outcomes of these patients while also highlighting GSK’s commitment to making an impact in Canada’s hematology oncology space through innovative new treatments.”