Woman loses coverage for lupus drug after moving to Manitoba
Northern Manitoba teacher suffering from lupus may be forced to move from province
A Manitoba woman may be forced to leave the province because the province’s drug program won’t cover the cost of her lupus medication, which she needs to function on a daily basis.
"I don't want to go back to how horrible I felt before I was on this medication," said teacher Emily Valiquette, who may have to leave her job in Northern Manitoba if funding for the drug doesn't come through.
Valiquette has lupus, which targets and destroys healthy tissues and organs and can be very painful.
Valiquette's flare ups left her with rashes, fatigue and put her in a wheelchair. Then she was prescribed a new drug called Benlysta.
"This medication is absolutely necessary for me to maintain my quality of life, to live independently and to work, and I want to keep that," said Valiquette.
When Valiquette moved from Barrie, Ont., to Lynn Lake she found out Blue Cross wouldn't cover Benlysta in Manitoba because the province doesn't think it works.
"I'm sad that patients that need it aren't getting the access to the new drug," said Deb Dohan, president of the Lupus Society of Manitoba.
In 2011, the FDA approved Benlysta for the treatment of lupus, and it is covered by private insurers in the United States.
"Benlysta is the first drug that has been made specifically for lupus in 50 years," said Dohan. "So because of it being so new we've never run into this problem before."
"Benlysta is not covered by the provincial formulary, and there are no plans to add it at this time," a provincial spokesperson said in a statement.
The spokesperson said the National Common Drug Review from April 2012 recommended not covering the drug.
Some private insurers do cover the drug, but no provincial program does.
“Just because it’s new and just because it’s available still doesn’t mean it is the right thing to do,” said Patricia Caetano, the executive director of Manitoba’s provincial drug program.
Dohan questions whether the drug review agency has a sufficient understanding about how lupus should be treated.
"Perhaps they don't realize when it hits different organs you need different medications," said Dohan.
"Those living with lupus know how devastating the disease can be," a provincial spokesperson said. "Manitoba Health, Healthy Living and Seniors would commit to re-examining what support could be provided."
Valiquette has been forced to search for new jobs outside of the province where the drug might be covered, after Manitoba Health referred her to disability services.
"Once I'm not able to pay for it any more, then I will have to go off the drug, and my rheumatologist says I will have about three months," said Valiquette. "Then I will start getting my old symptoms back, and if I do get my old symptoms back, which is likely to happen, then I won't be able to work anymore."
Valiquette would prefer to stay in Manitoba but can’t afford the $30,000 per year cost for the drug if the coverage doesn’t come through.
"I would really rather that I wouldn't have to leave Manitoba. I love it here. I love teaching here," said Valiquette.