Health Canada backs off on consent form

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Remember that March 1 deadline for signing a government consent form or doing without non-insured health care?

Forget about it. The deadline is history. The government has changed its mind.

The government has scrapped the universal, national consent form after facing an aggressive lobby against it by First Nations and Inuit leaders and much suspicion from people that the data collected with the form would be used to undermine health care entitlements.

Last year when Health Canada's Non-Insured Health Branch (NIHB) was pushing the form, director general Leslie MacLean said there were very specific goals the form was designed to achieve-help pay the bills, predict trends in medical services and share information with health care professionals to protect people's safety. There was also a requirement under the Personal Information Protection and Electronic Documents Act that had to be met, she said.

The goal of NIHB has now been articulated as such: to monitor clients for unusually high prescription drug use and seek to identify "individuals of concern." Those who use a lot of prescription drugs without a legitimate reason will be asked to sign consent forms.

Rather than call the new development a reversal of position, Health Canada called it a new approach to the Consent initiative.

"Under this new approach, the NIHB program will not require a signed consent form for day-to-day processing activities and program administration. NIHB clients will therefore continue to receive benefits for which they are eligible even if they have not signed a consent form," a government release stated. "Several factors have made this new approach possible. These include an evolving privacy environment, feedback from First Nations, Inuit and other stakeholders, and insights gained during the past three years. This approach respects the privacy rights of clients and is consistent with current privacy legislation."

The government statement also said "One of the keys to this approach to privacy is providing clients with clear information on how and why their personal health information will be collected, used and protected. Health Canada will continue its privacy awareness efforts in collaboration with First Nations and Inuit to ensure that clients know how their information is used and protected."

Attempts to contact Health Canada for additional comments were unsuccessful.

The government's change of plans was "Our victory," said Assembly of First Nations National Chief Phil Fontaine, whose executive and staff bent the ears of government officials to get the change.

"It was our victory and of course we should celebrate it. It tells me that this government is willing to listen. But more importantly, it goes beyond just listening."

About 160,000 Non-Insured Health Benefit clients-out of about 735,000-have signed the consent form. Those people who have signed can let their consent form stand, or they can withdraw their written consent.

The AFN has appointed Dr. Marlyn Cook, Dr. Michael Perley, Dr. Cornelia Wieman, and Rick Volpel to the Drug Utilization Review committee, which will develop the criteria to identify people at risk of abusing prescription drugs.

Manitoba regional Chief Francis Flett organized three conferences on the health consent issue in his region during the last year and was a vocal critic of the government initiative.

He was pleased that the government listened to the First Nation point of view, but still sees concerns.

"Well, it is a huge victory right now anyway. If we can hold it back for a certain amount of time. Right now, it's not in force. But we need to take a look at some of those things and say 'Well, do we really have people out there abusing drug use or addicted to certain drugs that we need to watch out for?' I know from personal experience that there are people out there that do do that. They go and see a number of doctors because the other doctor won't prescribe t again," he said. "That's the kind of thing we need to watch out for. . . We've got to control it. I'm not saying we're wrong in what we're trying to do. It's only a few people that might take advantage and use it for the wrong purpose. Other than that it's a huge victory."

Flett said First Nations people didn't really believe Health Canada's claims that their health information would only be viewed by health care providers.

"Once you provide information and give consent for your information to be used, a lot of these companies can also sell that information to someone in Visa or MasterCard or some bill collector or even if they did something wrong and the court can say we need that information. It doesn't stop them from giving that information," he said. "I don't think they'd be the only people knowing. Sometimes you wonder when you get something in the mail, you wonder how did they get my information."

Some critical health issues still need to be addressed, Flett added.

"A lot of our people believe health is a treaty right. If you look specifically in Treaty 10 it clearly indicates from the commissioner at the time that (health centres) were going to be strategically located around the territory because people were moving around and it wouldn't be feasible to have a doctor sitting in one spot," he said. "Treaty 10 says that all of the health services they were getting would be provided for free. That was said by the commissioners. The status of why First Nations people and non-Native people get to live together in this country is because of those promises that were made in treaty as a [condition] to live in this country."

And the steady succession of cuts to health services is still a major problem for First Nations people, he said.

"A lot of medication is being cut from the list because they feel it's not essential. When you look at our remote communities, when you have only a nursing station and they tell you that you can't have any more Tyleol, what else are they going to provide? And because of these cuts, emergency flights can't be made out of these communities," the chief said.

"There's a lot of problems associated with health that a lot of these people don't know about. Whether the government [thinks] what they're doing to these people is right, I don't know. But it certainly doesn't seem right to our people. Policy needs to change. And the way they can make it work is to have a joint negotiation process with First Nations people and make it work for everyone instead of just one side. Government can't just say we're going to cut you off. You don't just take those things away, especially in remote communities."