Government red tape puts boy's life a risk

Page 4

Mackenzie Olsen's hands are closing into fists and they may never open again unless he gets the medicine he needs to combat his illness, yet the federal and provincial governments are unwilling to pay for his treatment.

Mackenzie, 10, has Mucopolysaccharide (MPS) 1, commonly known as Hurler-Scheie Syndrome, a rare metabolic disease that can lead to weight gain, blindness, deafness, heart problems, spine and joint problems, breathing difficulties and death by his late teens or early twenties.

"He can't lay his hands flat on a floor and lift himself up now," explained Mackenzie's father, Raymond Amato. But there is hope for Mackenzie. Aldurazyme is a new, life-saving drug that stops the body's deterioration. It is a synthetic form of the enzyme alpha-L-iduronidase. This enzyme, missing in MPS 1 sufferers, helps the body remove mucopolysaccharides from the body. Without the enzyme, mucopolysaccharides slowly build up in the body's tissues and cause swelling in all of the major organs.

Aldurazyme has helped the boy live a normal life, until now. The clinical trial in which Mackenzie was participating ended in February before Health Canada's Common Drug Review process was complete. Although Health Canada has approved the drug for sale in Canada, the First Nations Inuit Health Branch (FNIHB), the arm of Health Canada that provides health care coverage for Aboriginal people, is not covering the costs of the drug until the review process runs its course. And at a cost of $17,000 per week for the drug, there is no way the family can afford to provide it on their own.

In a press release on March 23, Jason Goodstriker, Assembly of First Nations (AFN) regional chief for Alberta, criticized the government for their disregard of the boy's health.

"It may be very expensive to treat this rare disease, but a boy's life is at risk," he said. "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."

The family tried to get help from Alberta Health, but it refuses to fund the treatment because, as a First Nation member, Mackenzie falls under the jurisdiction of the federal government. There is a non-Aboriginal child in Alberta who is receiving treatments of Aldurazyme through the Alberta Children's Hospital.

The Common Drug Review process should be complete by June 22, but then the drug's availability will still depend on how fast the provinces, territories and the FNIHB accept the recommendations to include the drug and cover the costs of Mackenzie's Aldurazyme treatment. In the meantime, Mackenzie's body continues to deteriorate. Because the changes are permanent, by the time the drug is available it may be too late for Mackenzie to live a normal life.

Health Minister Ujjal Dosanjh has said that providing the drug before the Common Review Process is complete would destroy the credibility of the health care system.

But children's hospitals in British Columbia, Alberta, Saskatchewan, Quebec and Newfoundland are funding the Aldurazyme treatment for non-Aboriginal MPS 1 sufferers, said Kirsten Harkins, the executive director of the MPS society of Canada.

The AFN has called on the federal government to use emergency funding to help the boy.

"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," said the AFN Yukon Regional Chief Rick 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."

A Health Canada official said the proincial, territorial and federal governments are currently discussing a catastrophic drug coverage program under the National Pharmaceutical Strategy, but couldn't say when the program would be underway.

The AFN remains hopeful that Genzyme, the company that makes Aldurazyme, the Canadian Medical Association and the Alberta Minister of Health, Iris Evans, will hear its appeals to help Mackenzie.

"We're working towards a solution to ensure that Mackenzie's therapy continues," said a spokesperson for Alberta Health. But aside from writing a letter to Minister Dosanjh and asking to put the issue of orphan drugs on the agenda for the next health meeting with representatives from the provincial, territorial and federal governments, the spokesperson was unable to say what Alberta's proposed solution was or when the problem could be resolved. Orphan drugs are those that treat very rare diseases, like MPS 1, where there is typically no medical alternative to treat the disease. Alberta Health office also expressed regret that Genzyme pulled the drug supply to Mackenzie before the review process was complete.

"So really what we want to do, not just Albertans but as Canadians, it's really a national issue, is to find a way that the patient's therapy can continue while the review's underway," said the Alberta Health spokesperson.

Because the cost of the drug is so high, donations from the boy's home First Nation have not been enough to provide all of the drug treatment. Mackenzie has been taking slightly less than a half dose lately, but with his health already showing signs of deterioration, his doctor wants to put him back on a full dose, said Amato.

The Siksika Nation, where Mackenzie lives, donated enough funds to last through to the end of March, and the Na-Cho Nyak Dun First Nation in the Yukon, his birth nation, donated $24,000 on April 4. Though generous, it is barely enough to provide treatment half-way through April.

Harkins told Sweetgrass that six no-Aboriginal children in Ontario also had their Aldurazyme treatments cut as the Toronto Hospital for Sick Children has decided to wait until the Common Drug Review is complete.

"It's important for people to realize that the option is just not acceptable, to let the kids progressively deteriorate. It's not going to be a good outcome. I don't think anybody's going to be proud of that in our country, letting that happen to these kids. If they could see what would happen to them they wouldn't let this continue ... I mean we live in a country where we say that we pride ourselves on universal access to healthcare and yet these kids who need this desperately are being denied," said Harkins.

Mackenzie's family has set up a charitable bank account at the Bank of Montreal in Siksika with the hope that more donations will come.

"I guarantee we're not going to give up. You know, we do what we can and this isn't going to go away," said Amato.