Today, patients, family members, and supporters will converge on Parliament Hill for better pharmacare for people who are living with a rare disease. Less than 60 per cent of treatments for rare disorders even make it in to Canada, and 1 in 3 disease patients still can not get the potentially life-saving medication they need through their drug plan.
Will a national pharmacare program make the lives of patients who rely on life-changing medication be for their benefit, or will it hinder them even further?
“If new pharmacare looks like old public pharmacare then it could be disastrous for rare disease patients,” says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD). “Right now, families with a private drug plan can access an appropriate therapy almost as soon as its approved by Health Canada. If you rely on public drug coverage, you could wait two or more years, just to learn than only about half of you will qualify, even if it is a life-saving drug or the only drug for your child’s condition.”
It hardly seems like a fair solution.
An instance of this is exemplified by two young girls. One is seven, while the other one is nine. Both girls have been diagnosed with spinal muscular atrophy (SMA). The seven-year-old receives treatment through her parent’s work-sponsored drug plan with noticeable results. The nine-year-old is on a public plan, but can not obtain the only approved medication for SMA. The government-sponsored agency that reviews drugs for the public plans only recommends infants with the disease in the most severe cases be covered. This inspires a need for change so that adequate drug care is given those that need it and to the most vulnerable in our society – the youth.
“A national pharmacare program could ‘right the wrongs’ in how our patients access therapies today,” says Susi Vander Wyk, executive director of Cure SMA Canada and mother of a child with SMA. “But only if we all agree that rare disease patients should have fair and equitable access, and the National Pharmacare Advisory Council engages with rare disease patients and families in the consultation process.”
CORD has done a lot in the past to help bring international experts and best practices into Canada and addresses the unfairness of current policies and practices. They also launched in 2015, Canada’s Rare Disease Day Strategy, which represents a comprehensive integrated approach to diagnosis, expert care, community support, treatment, and research.
About one in twelve Canadians are living with a rare disease. That’s roughly three million people across the country. So, the question remains, will a new national pharmacare program help supply those with rare diseases the medication that they need? Hopefully, for the sake of the nine-year-old girl with SMA, there will come a more equitable solution.
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