Yukon Legislature Unanimously Urges Ottawa to Ensure Yukon Patient Receives Assistance

For Release #05-86
Wednesday, Apr 6, 2005

WHITEHORSE -- The Yukon legislature passed a unanimous government motion today urging the Department of Indian Affairs and Northern Development to fulfill its fiduciary responsibility for First Nations health care and ensure that a nine-year old Nacho Nyak Dun First Nation citizen suffering from the rare medical condition MPS-1, continues to be provided with the medication he needs.

"The time is now. This young boy needs to continue taking this medication. He has been part of a trial drug program that has now ended, and his life depends on the continuation of the drugs," said Dean Hassard, MLA for Pelly Nisutlin who brought forward the motion.

The disease, MPS-1, is a deficiency of a certain enzyme that results in a build-up of complex carbohydrates in victims cells. This leads to a series of conditions that cause death before adulthood.

Peter Jenkins, Yukon's minister for Health and Social Services, is urging the Federal Government to find a solution.

"This is the time for the federal government to take responsibility. This child should not suffer because Canada lacks an Orphan Drug Strategy," said Jenkins. "Not only is this a Yukon issue, it is also a national issue as there are other instances of rare diseases for which extremely high cost drugs are being tried. These situations can place families in catastrophic financial straits."

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