Severely At-risk First Nations Boy Falls Between Funding Cracks

[Guest guest]

Seems pretty unethical to use someone for a clinical trial to help prove the efficacy of a drug they are going to market and then leave them high and dry...

 

Also didn't Alberta just report a huge surplus they didn't know what to do with? Here would be a good place to start....

 

Shouldn't we be putting life first?

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Gathering Place First Nations Canadian News Alerthttp://www.gatheringplacefirstnationscanews.com/March 23, 2005

 

 

http://www.gatheringplacefirstnationscanews.com/PressReleases/050323_06.htm

 

 

First Nations Child's Life at Risk because of Barriers to Access Drug Funding

OTTAWA, March 2, 2004 - A nine-year-old child from the Siksika First Nation in Alberta needs an expensive drug to stay alive - and no parts of the Canadian health system will pay for it.Mackenzie Olsen suffers from a rare disease called Hurler-Schele Syndrome. He requires nearly $17,000 per week in enzyme replacement therapy in order to stay alive. For the past three years, he received subsidized treatments as part of an international drug trial. The clinical trial is now over. Donations from First Nations organizations and concerned citizens will dry up this week.

The federal, provincial and territorial governments are unwilling to assist the family in subsidizing the treatment until a Common Drug Review is completed. Although the drug is approved for safety in Canada, public payers have agreed to review drugs collectively before the drugs are publicly funded.While some hospitals are paying directly for the treatment of other children with a similar condition, they are not willing to do so here because Mackenzie is First Nations and so, considered a federal charge.

Since First Nations health care costs are covered by the First Nations and Inuit Health Branch (FNIHB) of Health Canada, they have the first responsibility to assist Mackenzie. So far, FNIHB has refused to pay for the coverage even on a temporary, exception basis until the review is completed."It may be very expensive to treat this rare disease, but a boy's life is at risk," said AFN Alberta Regional Chief Jason Goodstriker. "Funding and policy should not play a factor when it comes to prolonging the life of a child. I find it appalling that Health Canada is refusing to help.Unfortunately, the system is not as 'caring and compassionate' as it claims to be. Again, First Nations citizens are suffering because of jurisdictional confusion relating to First Nations health."In addition to appealing to FNIHB without success, the AFN has also written to the Alberta Minister of Health, the pharmaceutical manufacturer, Genzyme Corporation, and the

Co-Chairs of the federal/provincial/territorial committee who oversee the review process.Mackenzie was born in the Nacho Nyak Dun First Nation of Mayo, Yukon. AFN Yukon Regional Chief Rick O'Brien has written federal Health Minister Ujjal Dosanjh to reconsider funding the drug treatments on an exception basis."In 2003, the federal government set aside $16 billion over five years to help provinces fund catastrophic drug coverage plans for families who cannot afford to pay for life-saving drugs," pointed out Regional Chief O'Brien. "The provinces do not provide coverage for First Nations, and the federal government refuses to cover the costs in this case. Once again, First Nations are victims of government red tape and indifference."The National Chief is urging the federal government to take action to prevent irreversible damage to Mackenzie's health.The Assembly of First Nations is the national organization representing First Nations citizens in

Canada.

For further information: Bryan Hendry, AFN Communications Officer - Health, Cell: (613) 293-6106, bhendry; Don Kelly, AFN Communications Director,(613) 241-6789 ext. 320, cell (613) 292-2787;Ian McLeod, AFN Bilingual Communications Officer,(613) 241-6789 ext. 336, cell (613) 859-4335;Nancy Pine, Communications Advisor, Office of the National Chief, (613) 241-6789 ext. 243, cell (613) 298-6382

*Editors note: I have added a list of people to contact about this young mans also there is bank information if you can help out in that way please us this information .. Bank of Montreal number is .403-734-5596 ....people can call, finance person is Rae Ann Gordon, taking donations on behalf of family.

I thank you in advance for any and all help you can give this family... Nia wen ... Sharon...onen

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*Editors Note:

Please send a message to those listed below to help this young man live ... This is an outrage--andCC gatheringplace

Also I have added the AFN contact information they need to speak with a louder voice on this issue for all our children and people ....if they get all the Chief's across this country to stand together to put pressure on the government about this issue they should be able to get the help he deserves and is his right ...

Office of the National Chief, Communications Advisor, Nancy Pine, (613) 241-6789 ext. 243, cell (613) 298-6382

Prime Minister Paul Martinpm

Minister Ujjal DosanjhMinister's Office - Health CanadaBrooke Claxton Bldg., Tunney's Pasture P.L. 0906COttawa, Ontario, CanadaK1A 0K9Fax: 613-952-1154EMAIL: Dosanjh.U

Minister of Indian Affairs and Northern DevelopmentAndy ScottHouse of CommonsOttawa, OntarioK1A 0A6Telephone: (613) 992-1067Fax: (613) 996-9955E-Mail: Scott.A

Health CanadaCatherine SaundersMedia Relations OfficerTel: 613.946.4250

 

Please find below the email and snailmail address for the drug company Genzyme ...

Contact Us

Product or Customer Service AssistancePlease refer to the following pages for contact information specific to patients, health care professionals, or business customers:

Patient AreaHealth Care Professional AreaBusiness Customer Area

Genzyme Corporate Offices500 Kendall StreetCambridge, MA 02142T: 617 252 7500F: 617 252 7600

Genzyme U.S. Community Relations500 Kendall StreetCambridge, MA 02142Information Line: 617 252 7811Email Community Relationshttp://www.genzyme.com/home/send_email.asp?to=media

Partnering and LicensingU.S. Scientific DevelopmentOne Mountain RoadFramingham, MA 01701F: 508 872 9080Email Partnering and Licensinghttp://www.genzyme.com/home/send_email.asp?to=partners

 

 

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