Consent form causes concern

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First Nations people who access Health Canada's Non-Insured Health Branch (NIHB) services must sign consent forms so that their private information can be used by the government. The deadline for signing is Sept. 1, and if people don't meet that deadline they will be forced to pay cash, up-front, for medical services.

NIHB pays for medical care given to status Indian clients if it isn't covered by other programs. Elaine Johnson, the Assembly of First Nations' health director, says the government's form is a blanket consent form that she's afraid could allow the government to collect data that might be used to undermine Native entitlements.

Leslie MacLean, the director general of the NIHB, says that's just not the way it is.

"There are professional ethics on how you do research. One of the things that's clear about how you do research is that you don't do research on people without having their permission," MacLean said. "So one of the things that we're looking at clarifying right now with First Nations and Inuit people is just that. This data is not being collected for research purposes. This data is being collected to help us pay the bills, to help us examine how benefit areas are being used to make sure we're predicting trends accurately, and to share information on a very limited basis with health care professionals to help protect people's safety."

She emphasized that any decision to collect information on First Nations clients above and beyond those uses would require another, more specific consent form.

Johnson said First Nations people have heard those kinds of assurances before.

"People are mistrustful of what this information is being collected for and I think that's the bottom line. Health Canada has not been able to articulate once they get this information, what are they going to do with it? Who has access to it? Who are they going to share that information with? Are there First Nations that are involved in that process so they can monitor to make sure Health Canada's accountable for what they say they're going to do?" she asked. "They say, 'Oh well, you're protected by legislation.' But you and I know what legislation can and cannot do."

Johnson said some Native people see signs of a hidden agenda.

"That's what a lot of people are suspecting. That there's something else, a hidden agenda, here. But [the government officials] say that there's not. They say that their ultimate goal is to protect the client. But they need to be more up-front. I'm a nurse and I've said this to them as well. I said, 'You've come up with this deadline of Sept. 1. My bottom line as a nurse is there are people who have very grave concerns about this consent. Come Sept. 1, they are not going to sign this consent. And then what are you going to do? You're going to have people who are not going to have the service and then you're going to have big problems. Because it's a bread and butter issue. It's life and death issues we're talking about."

There's an Assembly of First Nations resolution to oppose the consent form and develop a strategy to fight it that will be presented to the chiefs during their confederacy in Vancouver in May.

Johnson said Health Canada is quoted in information that the reason they're pushing the consent form is because of the Personal Information Protection and Electronic Documents Act legislation, which has to do with privacy protection for electronic records.

Another reason the form has been developed, it's been said, is because some Native people were using the current system to access prescription drugs to overdose, or feed their addictions.

The auditor general and the public accounts committee have both pressured Health Canada to do something about First Nations abuse of prescription drugs.

MacLean said her agency is just playing catch-up, that modern technology requires new legislation to protect the public from having private information used for illicit purposes-inside or outside govenment.

"There's three pieces of legislation that were all coming together to tell us first, that we needed to get explicit consent from clients in order to keep paying their bills, in order to respect their privacy rights and in order to protect their safety. Because, unlike many other federal or provincial programs, we [the NIHB] don't have a legislative base. So if I take a federal example like Veterans Affairs. When people apply for benefits under Veterans Affairs, they have to sign a consent form. The form says, 'I'm applying for these benefits and you have a right to see if I'm eligible and you have the right to keep the information on file,'" Elaine Johnson said. "We require client consent in order to meet federal, provincial and territorial privacy requirements."

But First Nations people who won't sign the a form out of fear that doing so might impact on their treaty or Aboriginal rights are going to be forced to pay for the services up front.

"As you can appreciate, without the information we cannot pay the bills," said Leslie McLean. "If I don't know that a client has gone in, gotten his teeth cleaned, paid and that the service was $95 and it was received on Oct. 11 for the person who has this treaty or status number, we have no authority to pay the bill."

Johnson said that hard line approach is not going to work.

"What is Health Canada's liability? Come Sept. 1 when individuals have to sign a consent form, if an individual says, 'No, I will not sign,' the client can do what they call a one-time reimbursement form. What that means is they can do a one-time consent, they can pay for the medication. But that's only if they have to money to do so. If they don't have the money, they don't get the product. The concern I have is, if somebody still refuses to sign, then what's the liability of Health Canada if something happens to an individual who refuses to sign consent? A lot of people who access non-insured health benefits, a lot of them are diabetic, hae arthritis, chest pains. They really require the medication. If they decide that this is not good for them, then their health is jeopardized."

NIHB coverage has been cut repeatedly over the last couple of years. First Nation leaders worry this is another tactic to reduce expenditures.

"My concern with non-insured is that Health Canada tends to look at it from a fiscal view. We in First Nations look at non-insured as a service issue, " Johnson said.

Native physicians told Windspeaker the level of care under NIHB has dropped alarmingly in the last few years as a result of government cutbacks. Johnson sees the same thing.

"Exactly. Based on fiscal reality. It's not based on what services should be provided. And that's the concern that we have. They make benefit cuts, but it's not based on service, not on what services should be provided."

MacLean said the information collected by Health Canada from those who do sign the form will help the government improve its level of service.

"Pharmacists are paid to catch drugs that contradict one another at the local level. But they don't always catch it. So there's all kinds of follow up activity that private and public plans do," she said. "It's normal for benefit programs to have consent and it's normal that there be monitoring to make sure that people are getting benefits appropriately."

Windspeaker asked McLean what she could say that would re-assure people that their fears about the consent forms are unfounded?

"I wish that my saying it could make it so because I'd go all around the country and I'd tell all 700,000 First Nation and Inuit people we're really not doing this to be bad. We're doing it to comply with the law and, frankly, to respect your privacy rights in a way we haven't been doing," she said.