Rare Diseases

National drug policy for rare diseases has fallen between the cracks

The Globe and Mail, April 04, 2011
Stephen James suffers from symptoms that are as extreme as they are rare: food cravings that compel him to take bolt cutters to the kitchen pantry that his parents have locked, or even a screwdriver to a padlocked freezer. His eating compulsion is due to Prader-Willi syndrome, which is caused by a gene missing on part of chromosome 15. Morbid obesity is one of its biggest medical challenges and many of those with the syndrome – at least 300 in Canada – have diminished muscle tone and decreased mental capacity; most will not be able to live independently. Orphan medicine – treatment for a life-threatening or chronically debilitating rare condition – cost the James’s private health insurer $50,000 annually, while treatments for other diseases can cost up to $1-million a year. To read the full article, click here