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TORONTO – For disease-specific groups fighting for treatment, pharmaceutical companies have the funds to turn pipe dreams into reality.
How much influence those companies exert over the advocacy groups they help can be a trickier question – especially when the treatment in question is a drug the company makes.
So next month, the Canadian Consensus Frameworks for Ethical Collaborations will try to hammer out guidelines similar to those used internationally: When should patient advocacy groups take pharma cash, and under what circumstances?
“Any area needs rules and boundaries … for any kind of relationship,” said Gail Attara, member of the Framework and head of Canada’s Gastrointestinal Society.
READ MORE: Patient groups must say if their funding comes from pharma companies
“If you’re getting funding from a foundation or a pharma company or another corporation of any kind, and even from an individual donor, it’s important for everyone to know how you are going to use those funds.”
The GI Society is one of 84 patient advocacy groups registered with the Ontario government. Of those, Global News has so far independently confirmed at least 46 accept money from pharmaceutical companies – usually manufacturers of treatments for the disease these advocacy groups cover (we have yet to hear back from 36).
The Ontario Health Ministry requires all groups wanting to make presentations on the need for drugs fill out an application form that includes a question related to “conflicts,” specifically regarding funding from drug companies.
In an emailed statement, the ministry said it conducted eight drug reviews this month, at which 13 advocacy groups made their case.
All 13 declared conflicts.
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Some indicated funding details on their websites; others included it in annual reports.
But many had no funding information openly available online, requiring Global News to reach them by phone.
But Attara said his group has strict rules on the conditions under which it accepts pharma company cash.
“We receive funding on our terms, so we ask them for funding for specific projects and either they agree or disagree. And if they disagree we don’t receive the funding.”
Attara says her organization has been around long enough to know it has to be the “dog wagging the tail, not the other way around.”
She hopes those stringent guidelines become the reality for all groups.
WATCH: What role do pharmaceutical companies play in gaining support for their drugs?
Newer groups can say, ah, that’s how we do it,” Attara said.
The Canadian Consensus Frameworks for Ethical Collaborations hopes to have guidelines ready for everyone to use in the new year.
Beth Vanstone and her young daughter, Madi, fought for more than a year so the now 13-year old could get access to a drug to treat her rare form of Cystic Fibrosis.
She said they were never funded by the drug’s manufacturer, however, and she was shocked to hear other patient advocates were.
“You need to have everyone know that you are being helped and assisted by the drug company. I think to keep it authentic it needs to be out on the table that you’re not going at it alone, like we did,” she said.
“Every patient has their own story and fight, and I understand that. However, I think when you have big pharmacy involved in funding that journey, it’s perhaps not going to be looked at the same as somebody going at it from the heart to get what they need.”
Ontario’s Health Minister Eric Hoskins said he’d like more transparency but wants to keep hearing from patient advocacy groups, regardless of any corporate pharmaceutical ties.
“They bring that important patient experience, which I think is vital as we deliberate on additional measures.”
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