In September 2008, the provincial/territorial health ministers indicated their intent to approach the federal government to establish a Canadian Access Program for Drugs for Rare Diseases, which would involve centralized, transparent decision-making with public involvement, with the cost of these medications split 50/50 between the federal government and the provinces or territories.

Two provinces have addressed the issue. The government of Alberta has a Rare Disease Drug Program, which came into effect on April 1, 2009. Albertans are required to apply for coverage under the program. The program defines a rare disease as one that affects less than 1 in 50 000 Canadians, or fewer than 50 Albertans, and current diseases which are eligible for coverage are: Gaucher’s disease, Fabry Disease, MPS-I (Hurler/Hurler Scheie), Hunter disease; and Pompe disease.

Ontario has developed a framework to assess how these drugs could be funded for certain patients.

This area of the NPS has the potential to be one in which there will be great and extremely unfair variation among the provinces, since prescription medication for rare diseases could potentially cost anywhere between $250 000 and $ 1000 000 annually . As well, the two issues of catastrophic drug coverage and expensive and rare diseases rare diseases are both extremely costly. The result seems to have been that the provinces and territories have struggled to resolve funding issues, which has been a primary factor that is hindering progress in this area.

Although individual provincial progress has been made in terms of catastrophic drugs, coverage for rare diseases is still lacking. We have yet to see the impact that Alberta’s step forward in this area will have on other Canadian jurisdictions. Regardless, the ‘National’ in National Pharmaceutical Strategy seems to have slipped away, and Canadians could still benefit from a renewed national approach to ensuring that no Canadians are left to struggle with both diseases and drug bills.