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Campaign aims to increase awareness for rare diseases and those affected

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Trevor Pare, a 22-year-old from Alberta who was diagnosed with Pompe disease when he was 10 months old.


February 29 is Rare Disease Day. CHÉOS Scientist Dr. Larry Lynd and his colleagues with the CIHR New Emerging Team for Rare Diseases are collaborating with the UBC Graduate School of Journalism on a new project aimed at raising awareness about rare diseases and the issues facing patients and Canadian policy makers.

Called “Million Dollar Meds,” the project is a series of video clips of people living with rare diseases and their families, as well as interviews with health economists, researchers, and experts.

A rare disease is a condition that affects fewer than 1 in 2,000 people. Over two million Canadians have a rare disease; currently, treatment options for these diseases are limited and expensive. Some drugs cost up to $1 million per year, per patient.

Dr. Larry Lynd

“Orphan drugs are becoming a growing part of our health care spending,” said Dr. Lynd. “We must develop funding strategies to keep costs in check while improving access to effective treatments for patients, or we risk eroding the health care that is promised to all Canadians.”

The “Million Dollar Meds” initiative is funded by CIHR. In April 2012, Dr. Larry Lynd and his colleagues received a $1.5 million team grant to investigate potential funding policies for the treatment of rare diseases, and established the CIHR New Emerging Team for Rare Diseases. Researchers are developing evidence relating to social values, testing, and treatment costs, as well as novel approaches to priority setting and evidence evaluation that will facilitate drug coverage decision-making for the treatment of rare diseases. They believe study results will hold relevance for policy makers at the provincial, national, and international level.

Interview with UBC Public Affairs: