Urgent pleas after life-saving medication costs skyrocket, Ontario drug coverage removed
Posted November 19, 2021 12:57 pm.
Last Updated November 20, 2021 11:58 am.
In less than a week, Aasiya Hussain will run out of her life-saving medication and will struggle to breathe, in immense pain.
Her next prescription is sitting at her pharmacy, but after Ontario suddenly removed the drug from the Ontario Drug Benefit Formulary and the manufacturer Pharmascience increased the price by over 472 per cent, she says she can no longer afford to take it.
Not only has it been removed from Ontario’s formulary, which lists the drugs covered by the government, but across Canada as well, according to Hussain. The price of the drug increased to $1,622.79 from $343.79, for patients who require an initial four doses a day, according to Hussain.
The Toronto-area woman, who currently requires eight doses a day, said the new costs will amount to tens of thousands of dollars or more annually, if it’s not covered.
“This is a life-or-death situation for patients like I, who have limited time left with our remaining doses, and those who have already used theirs up,” said Hussain, who lives in the GTA. “Essentially what it does is relegate patients like me all across Canada to a very horrific and painful death.”
Hussain is on PMS-Sodium Cromoglycate to treat her respiratory and lung conditions, and to stabilize her mast cells. It is used by people who have multiple medical conditions from common asthma, to chronic and severe lung conditions, mast cell diseases, and cystic fibrosis.
“Cromoglycate is a life-saving, life-sustaining medication for many … So, it’s going to have far-reaching implications,” she said.
She is on the maximum dose of the drug, taking it every three hours. At the end of those three hours, she will struggle to breathe until she gets another dose.
“It is a liquid medication that you put into what’s called a nebulizer and it turns that liquid into something you can breathe in directly into your lungs and for people on this medication that helps keep our lungs alive and the moment that it wears off is when we struggled to breathe,” said Hussain.
She has applied for the Exceptional Access Program (EAP) which allows for some drugs not included in the formulary to be covered. But she said EAP confirmed the drug isn’t listed on their covered exceptions, and it may take several months for her application to be further reviewed.
Hussain said she has asked both the pharmaceutical company and the Canadian government why these changes have been made, but despite her advocating for herself and others, she said she has yet to receive a straight answer.
“What I’m told, according to formularies across Canada, the government offices are saying that it was ‘removed at the request of the manufacturer.’ And the manufacturer Pharmascience is telling me when I asked them and advocate strongly is that it’s the government,” explained Hussain. “So I’m not really getting an answer that can justify placing lives at risk.”
Pharmascience tells CityNews because the drug is “a low volume product with an uncertain commercial viability,” they had to increase the price rather than discontinuing the product altogether. The drug manufacturer said this price increase is what led to the delisting of the product from the Ontario Drug Benefit formulary.
After CityNews called the customer service line on two separate occasions, asking why the price of this drug had been increased, agents said they had been getting several inquiries about the PMS-Sodium Cromoglycate and head office was aware questions were being asked.
Hussain is urging the provincial government and Pharmascience to rethink their decision.
“The formulary removal and price-gouging condemns many people like myself to die in the most horrific, painful way with a catastrophic ripple effect across Canada.”
She also urged others to contact their local government officials to advocate for herself and others on this medication.
“Our lives are worthy of living and yet we are systematically denied our next breath and I hope that everyone listening this understands that it’s not a question of if but when it impacts you too.”
Hussain explained she also wants to make sure this doesn’t happen to anyone else who is on life-saving medication.
CityNews has reached out to the Ministry of Health but have yet to received a response at this time.
