Halifax resident Gwen Barry says she feels she has been given her life back thanks to a life-changing drug.
The 84-year-old was diagnosed with myelodysplastic syndrome, or MDS, about 23 years ago.
“The median life span is about 8.3 years, so I’m an outlier,” she said.
MDS is a rare blood disorder where bone marrow fails to produce healthy blood cells.
Barry was on a previous drug, but it stopped working a few years ago and she had to undergo blood transfusions instead.
“When I had to go on blood transfusions, you can’t stay on them for life, because you get iron overload and it gets stored in your organs and does damage,” she said.
At that time, a drug known as Luspatercept came on the market.
“It’s just like a vaccine in your arm, painless, takes two minutes, once every three weeks and that keeps my red blood cell count high enough that I don’t need blood transfusions,” Barry said.
“It’s given me hope for the future because blood transfusions aren’t going to give you much of a future, so it gave me hope. It came along just at the right time that I needed it.”
Since going on Luspatercept, she has not needed a blood transfusion.
Barry said it takes the worry away.
“I’ve had 20-some years to worry, at each step along the way, so I’m very thankful for Luspatercept.”
“When it increases your red blood cells, you have more oxygen and it’s easier to live. You can walk longer, you can walk further. I swim 24 laps in the pool once a week and that’s pretty good for 84 years old.”
“It’s kind of given me my life back.”
Eighty-year-old B.C. resident Joey Kerr was also diagnosed with MDS six years ago, but she doesn’t have the chance to experience Barry’s life-changing medication.
B.C. is the only province in Canada that doesn’t cover the cost of Luspatercept, which costs around $200,000 a year per patient.
Kerr and her family have been fighting for the drug to be covered in B.C.
They recently appealed the decision for coverage to the B.C. government, but were denied.
“I felt very discouraged, very down and alone,” Kerr told Global News.
She has to get a blood transfusion once a month because her bone marrow does not make enough healthy blood cells.
“I’m covered in bruises and they have a hard time with my veins,” she said.
Cindy Anthony, executive director for the Aplastic Anemia & Myelodysplasia Association of Canada (AAMAC) said they have been advocating for Luspatercept to be covered across Canada.
“The goal of the drug is to lower the patients’ dependence on having blood transfusions and this obviously changes the life of those patients,” she said.
“The energy level, just the ability to live their normal lives with the disease, has a huge impact, not only on the patients but the patients’ families as well.”
Health Minister Josie Osborne told Global News that B.C.’s Fair Pharmacare program works a bit differently than programs in other provinces.
“We provide more coverage, 100 per cent coverage, for a much wider variety, or number, of pharmaceuticals than other provinces do,” she said.
“Each province makes its own decisions, again, but based on the Independent Advisory Drug Benefit Council here in British Columbia, it’s important to look at the clinical evidence to use an evidence-based process, looking at the health benefits, looking at the cost-effectiveness of drugs and then making decisions about which drugs will receive coverage and which will not.”
Osborne said the government always intends to help British Columbians cover the cost of medications and pharmaceuticals.
“I cannot speak about an individual case, but I would recommend anybody who is in the situation with a diagnosis like MDS to be working with their care provider team to understand what therapies, what treatments are available for them,” she added.
Anthony said that, when it comes to the cost of Luspatercept, one factor to consider is the cost to the health-care system of providing regular blood transfusions to a patient.
“For a patient to receive a blood transfusion, they’re really in a health-care facility, probably for five to six hours by the time they get there and get any preliminary tests they need to get done and then having the transfusions,” she said.
“Iron overload is a huge issue for our patients who receive multiple blood transfusions. So when those individuals require medication for iron overload, that’s more drain on the health-care system. For a patient receiving Luspatercept, they’re trying to become transfusion independent.”
Anthony said the B.C. government should look at the other provinces across Canada.
“Why has every other province medical experts looked at this medication and said it’s a life-changer for these patients and one province is not?” she said. “You have to sort of question the logic behind that when it’s just one province that’s coming to those conclusions when one other province is not.”
“Everywhere else in Canada, it is covered.”
MLA for Delta South, Ian Paton, has also been advocating for Kerr to receive the medication.
“This poor lady, Joey Kerr, in my riding, is at wits’ end with her own life and when it may come to an end if she cannot get access to this drug to be paid for by PharmaCare in British Columbia,” he said.
“When you see the massive amount of money that is spent every day by this NDP government on whatever it is in this province, and yet here’s a lovely lady’s life on the line because she cannot get this drug, which is available in every other province (except) British Columbia, it’s just a terrible shame that she is facing perhaps death because she cannot get this drug called Luspatercept.”
Anthony said that when she first met Joey, she was a very active individual who hiked and cycled and was thriving.
“And to just be denied that opportunity, to me, it’s just a real shame and very frustrating for our organization. We worked very hard to have this medication approved in Canada and then see it listed in all the other provinces and for British Columbia to do this disservice to our MDS patients is just not right.”
© 2026 Global News, a division of Corus Entertainment Inc.
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