ALSAC pALS Andrew Darke has recently released a paper “Can I Be Honest With My Neurologist? A Problem of Health Technology Assessment in Canada“, published in Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques. <link>

The paper discusses critical issues related to drug availability without access. Two new Health Canada approved life extending drugs – Albrioza and Radicava – are only available to a minority of patients with ALS (which some estimate <10% of pALS), under our publicly funded provincial drug benefit plans.

The paper has been included in a submission made jointly by ALS Action Canada and the ALS Society to Suzanne McGurn, the President and Chief Executive Officer of CADTH, concerning these problems. These issues have also been brought them to the attention of the federal Minister of Health, who has announced a transfer of $1.4 billion to the provinces and territories through the National Strategy for Drugs for Rare Diseases, and to members of the federal all-party ALS Caucus.

As discussed in these submissions, the problem of drug access that we are facing does not reside within Health Canada but is due to the review practices and decisions of the Canadian Agency for Drugs and Technologies in Health (CADTH) and the provincial Ministries of Health. However, it is also clear that Health Canada’s proposed $1.4 billion funding will do little for access to drugs for ALS without significant changes to the way eligibility for drug coverage is determined by CADTH and the provinces, and this should be of concern to the federal Minister of Health, as the National Strategy for Drugs for Rare Diseases is implemented. It would be a tragedy if fund-raising efforts that support research into ALS, result in treatments that are still unavailable to most Canadians who desperately need them.