Bond Head mother-daughter duo Madi and Beth Vanstone spent a few days in Toronto at Queen's Park earlier this week advocating on behalf of the cystic fibrosis (CF) community.
The pair were invited on behalf of CF Canada, a national not-for-profit corporation committed to improving and lengthening the lives of CF patients.
"Some of our community's most effective advocates from across Ontario came together to meet with MPPs and explain the challenges still being faced by not only our community but the entire rare disease community," Beth told BradfordToday.
Beth says although there have been great strides made in the past few years when it comes to lifesaving drugs for the CF community, such as the recent approval of the Trikafta, there is more work to be done.
As per the CF Canada website, while some private insurers are funding Trikafta for those who need it, others in the patient community are experiencing challenges in accessing the drug through private employee or group benefit plans. Some patients are also experiencing challenges in accessing public coverage due to where they live, and not having sufficient coordination with public and private plans.
"Due to private insurance companies not agreeing to cover these lifesaving treatments many families have been forced to drop their private plans in order to access public plans, which leaves them without dental, vision and the other benefits offered by their private plans," said Beth. "Families that access treatments via the Trillium plan are left paying a hefty deductible. Across Canada eight of the 14 provinces or territories have plans that provide access to these medications without the additional cost to families."
Beth and Madi have been fighting for access to lifesaving medications for cystic fibrosis patients for the past decade. Madi made headlines nine years ago when, at the age of 12, she convinced then-premier Kathleen Wynne and the Ontario government to approve coverage for her life-saving drug, Kalydeco.
Without the coverage by OHIP, her family would have been looking at spending almost $350,000 a year for the drug, although insurance and the fact that she was part of a study reduced the cost to the Vanstones to about $60,000 per year.
But getting approval for her medication was half the battle as she and her mom continue to fight for other rare disease patients and lobby the government to make changes to Canada's Rare Disease Strategy in order to make it easier for patients to obtain orphan drugs.
"Our message to the government was please look to find a more equitable program for patients to access treatments as found in many other provinces across Canada. We also would like to see private insurance companies more accountable to payers," said Beth. "Ultimately we would love to see a Rare Disease Drug Strategy where treatments and therapies for Rare Diseases have a special pathway to access."
The Vanstones had a meeting with MPP Brian Saunderson, who has agreed to work alongside the rare disease community. They also spoke with MPP Mike Scheiner Leader of the Green Party who sponsored the breakfast for CF Canada Lobby Day; MPP John Fraser, Interm leader of the Liberal Party; MPP Sarnia Lampton, Bob Bailey; and Noah Ng, staffer for the Hon. Merrilee Fullerton, Minister of Children, Community and Social Services.
"All agreed that the issue needs to be addressed and is a non-partisan issue. We look forward to continuing to work alongside the government to improve access and affordability of drugs for rare diseases in Ontario," said Beth.
