TORONTO, June 10, 2019 /CNW/ - Today, The Isaac Foundation, a registered Canadian charity committed to supporting and advocating on behalf of patients and families coping with rare diseases, launched a national awareness program designed to call attention to the issues related to access to innovative therapies in Canada.
While many rare diseases still lack effective treatment options, innovation is progressing rapidly and an overwhelming number of Canadian families are in urgent need of access to treatments that can be life-changing and even life-saving. Unfortunately, this access can prove painfully slow, and sometimes too late entirely.
Andrew McFadyen, founder of The Isaac Foundation, whose son Isaac was diagnosed with mucopolysaccharidosis (MPS) VI, a rare and progressive genetic disease, realized early on that patients and their families, fighting to keep their loved ones well, often have little influence in the political arena where health care access decisions are made. And that, he emphasizes in a video developed to support the awareness program, is where the challenges begin.
"If a patient in this country can't gain access to a treatment that has been approved by Health Canada, and have it made readily available for them, then this image we hold that we have the best healthcare system in the world should really be called into question," says McFadyen.
Using the hashtag #AccessForAll, the awareness initiative encourages Canadians to educate themselves on the drug approval process in Canada, groups such as the provincial/territorial Expensive Drugs for Rare Diseases Working Group that are investigating ways to improve the access framework, and ways industry, government, patients and the public can collaborate on shared solutions.
"No one on any side of the table wants to block access for patients with rare diseases," says McFadyen. "They desperately want to ensure access. But the processes in place can make it very difficult for things to move quickly. The speed at which scientific discoveries are taking place has increased exponentially, and the system was simply not built to adapt to these rapid medical advances."
#AccessForAll is a rallying cry for both the patient community and the general public.
Patients, particularly rare disease patients and their families, facing challenges accessing treatment can connect directly with The Isaac Foundation and find more information at www.theisaacfoundation.com/accessforall.
Likewise, Canadians who would like to show their support for the rare disease patient community while demonstrating their commitment to sustainable access to innovative therapies are encouraged to comment on social media, sharing the #AccessForAll video, related article, and their own stories and supportive messages.
"It's incumbent on us as a country to ensure that we look after rare disease patients, especially those we know we can help. And the best way we can address these access challenges is through collaboration – with industry, with government, and with patients themselves – because the only way we're going to see success is through dialogue and coming up with shared solutions," says McFadyen.
About The Isaac Foundation
The Isaac Foundation is a Canadian-based charity and patient advocacy organization dedicated to supporting individuals living with rare diseases, and finding the cures patients need.
The Isaac Foundation was founded in 2007 to fund innovative research projects that aim to find a cure for Mucopolysaccharidosis (MPS), a rare, debilitating, and devastating disease. While that original objective is very much the core of our work, in the decade since The Isaac Foundation was founded, that mission has broadened to include any rare disease. Our remit falls into three main areas, focusing on: research, patient support, and advocacy for patients seeking treatment.
Until those cures arrive, we are here to advocate on patients' behalf to ensure life-sustaining treatments are covered by Canada's health care systems. 30% of children affected with a rare disease won't live to see their 5th birthday. 95% of rare diseases have no available treatment option. We are here to play a small role in helping change those devastating statistics.
SOURCE The Isaac Foundation
For further information: Alexandra Hall, Managing Director, The Isaac Foundation, 647-268-3882, [email protected]