Group calls for national policy to cover drugs for rare diseases
14.05.2008 14:01
Health
- Source: cbc.ca
A group that represents Canadians with rare disorders is calling for a national policy to help pay for their astronomical medical costs. The call comes after the Alberta government decided to pay for a drug for a 17-year-old boy stricken with Pompe disease, a rare and potentially fatal disease caused by an enzyme deficiency that disables muscles. Trevor Pare of Innisfail has been a participant in a clinical trial that paid for the drug Myozyme. The trial is over at the end of May and the Alberta government has decided to take over the annual cost, which is more than $500,000. "It's just like unbelievable, unbelievable," Linda Pare, Trevor's mother, told CBC News. She said without the drug, her son would die in six months. The Canadian Organization for Rare Disorders is pleased Trevor will continue to get his special drug. But Durhane Wong-Rieger, president of the organization, said it is time for a national policy on funding of drugs used to treat rare diseases. "You've got families like Trevor's who have to go to the media and go begging to the government to get help and the sad news is even if we get one [paid for], we have to start all over with another," says Wong-Rieger. "Sometimes we even get a whole disease covered; then when the next disease comes along, we're starting all over again. She said Canada is one of the few developed countries in the world that does not have a policy for rare disorders. Alberta Health Minister Ron Liepert said the province is working on a policy to deal with all Albertans who require very expensive drugs for rare disorders. But because the policy hasn't been hammered out, the government decided to step in and pay for treatment in Pare's case. "We're not yet ready with the policy — it will be part of the pharmaceutical strategy that we roll out over the next few months," says Liepert. "However, in this particular case his clinical trial was expiring and caucus made a decision and it is a moral decision and we will be funding the drug through the Blue Cross plan." Post a commentPeople have commented on this storyRecommend this storyPeople have recommended this storyStory Tools: E-MAIL | PRINT | Text Size: SMLXL | REPORT TYPO | SEND YOUR FEEDBACKStory comments (0)Sort:Most recent | First to last | Most recommendedPost your commentNote: The CBC does not necessarily endorse any of the views posted. By submitting your comments, you acknowledge that CBC has the right to reproduce, broadcast and publicize those comments or any part thereof in any manner whatsoever. Please note that comments are pre-moderated/reviewed and published according to our submission guidelines. Comment:Characters allowed: 2500PostSubmission policyRelatedInternal LinksAlberta teen pleads for $500,000 drug therapyHealth HeadlinesCraving for sweets, obesity risk could be genetic: study00For those who have a sweet tooth and wonder why they're so drawn to sugary foods and beverages, the answer could be that it's all in the genes. Exercising teens have lower risk of premenopausal breast cancer: study 00New research shows exercise during the teen years — starting as young as age 12 — can help protect girls from breast cancer when they're grown. Eastern Health sends written apology to breast cancer patients00The health authority at the centre of Newfoundland and Labrador's cancer inquiry has sent a formal apology to hundreds of breast cancer patients.Heavy pot smoking could raise risk of heart attack, stroke00Heavy, long-term pot smoking might raise the risk of developing a stroke or heart attack, a new study found.Boy forced to get chemo treatments returned to parents00An 11-year-old Hamilton boy who was given chemotherapy against his wishes will be returned to his parents' custody.Health FeaturesIN DEPTHCholeraDisease of disasterCONSUMERCalorie trackerVIDEOImmigrant healthA decline in health after settling in (Runs 4:09)IN DEPTHFoot-and-mouthHuman, animal versions unrelatedHEALTHLightning ProcessControversial training program comes to CanadaPeople who read this also read …
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