Ottawa delays NIHB consent form deadline

Medical patients in Canada’s Inuit regions won’t have to worry about being denied essential medical care if they don’t sign a mandatory consent form that surrenders their right to medical privacy by Sept. 1.

On July 25, after Nunatsiaq News’ press-time last week, Anne McLellan, the federal health minister, announced that the deadline for signing the form has been extended until March 1, 2004.

McLellan worked out the extension in talks with Phil Fontaine, the newly elected president of the Assembly of First Nations.

If Inuit beneficiaries and status Indians don’t sign the form, they won’t be eligible to have extra health-care costs paid by Health Canada’s Non-Insured Health Benefits program, or “NIHB.”

Called the “NIHB Program Consent Form,” the document gives Health Canada and DIAND bureaucrats — and numerous Health Canada agents and contractors — permission to look at sensitive personal information contained in medical files.

Those who refuse to sign the document may still receive medical care — but only if they pay for it out-of-pocket. For most Nunavut Inuit, that would amount to a denial of care.

That’s because the NIHB covers the costs of medical services that aren’t covered by universal territorial and provincial health insurance plans. In Nunavut, that includes patient air fares, prescription drugs, dental care, and vision care.

Last week, Nunavut’s privacy and information commissioner, Elaine Keenan-Bengts, said that in her opinion, the NIHB consent form violates privacy rights. Keenan-Bengts does not have the authority to act on complaints against federal departments and agencies.

But the Office of the Privacy Commissioner of Canada, which does have that authority, has received “a number of complaints” about the Health Canada consent forms, a staff person said last week.

The Privacy Commission official would not say if those complaints came from organizations or individuals, and would not say what regions of the country they represent.

Last month, the Qikiqtani Inuit Association’s social policy department issued a statement denouncing the forms, saying they violate a long list of rights, including the right to privacy, the right of Inuit to be consulted about social policy under Article 32 of the Inuit land claim agreement, and the right to medical care.

The QIA statement said that because Inuit are under enormous pressure to sign it, any “consent” obtained through signing the form is legally invalid.

Though First Nations are the largest single group affected by the scheme, most Canadian Inuit also risked losing access to medical care if they didn’t sign the form.

Last March, the Inuit Tapiriit Kanatami (ITK) advised Inuit not to sign the consent form until after ITK had worked out an agreement with Health Canada to protect the privacy of Inuit patients. But Health Canada launched the program before reaching such an agreement.

Though ITK is now “applauding” McLellan’s six-month delay, it is still urging Inuit not to sign the form until after an agreement is worked out.