Following the money between patient groups and Big Pharma

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Why would more than two dozen patient advocacy groups want to stop Health Canada from trying to lower prescription drug prices in Canada?

"It seems startling because you would think lower drug prices are in the interests of patients," said Sharon Batt, a Dalhousie University researcher who studies the links between such groups and the pharmaceutical industry.

You would think lower drug prices are in the interests of patients.- Sharon Batt, Dalhousie University

The coalition of 28 groups argues that lower drug prices could be bad for patients because it would prompt drug companies to stop selling new drugs in Canada and to pull research out of Canada, which could mean fewer clinical trials.

This coalition and other Canadian patient advocacy groups receive funding from the pharmaceutical industry — an issue that made headlines this week after a U.S. senator revealed links between opioid manufacturers and patient advocacy groups. 

The coalition's message echoed the one being advanced by the pharmaceutical industry lobby group Innovative Medicines Canada, which made a similar argument in a series of full-page ads this week in The Hill Times, a newspaper that covers the federal government and politics.

"Far-reaching changes to Canada's patented drug regime will lead to job losses, a cutback in R&D investment and reduced access to the latest therapies," said the full back-page notice in Monday's edition.

The Canadian patient groups said their position on changes to Canada's Patented Medicine Prices Review Board was made "independently from all funding bodies and solely represent[s] the views of the patient groups themselves."  

'We all feel the same way'

The similarity between the two messages is no coincidence, said Louise Binder with the Save Your Skin Foundation who organized the coalition of groups representing patients with cancer, arthritis and a variety of rare diseases. 

"We all feel the same way — that there may be better ways to resolve this problem," said Binder. She said she did not work with the industry group to co-ordinate the campaign against Health Canada's proposed changes.

Binder said she has accepted funding from pharmaceutical companies including Novartis, Janssen, Pfizer and AstraZeneca. Many of the other groups in the coalition have also disclosed industry support.

Innovative Medicines Canada did not answer questions from CBC News about why the two campaigns are so similar.

In a statement, president Pamela Fralick said, "We have voiced our concerns about the effects of the proposed changes in speeches and in the media. We have also discussed these concerns with all levels of governments, as well as various stakeholders, including patient groups, think-tanks and researchers."

The timing of the full-page ads and the patient news release coming out in the same week wasn't a coincidence either. Both Binder and Fralick said it's because Health Canada closed its consultations on the policy changes on Wednesday.

Groups maintain independence

Earlier this week in the U.S., Democratic Senator Claire McCaskill released a report revealing financial ties between opioid manufacturers and patient advocacy groups.

Between 2012 and 2017, five leading opioid manufacturers contributed almost $9 million US to patient groups, and the report concluded that money had an influence.

"Through criticism of government prescribing guidelines, minimization of opioid addiction risk and other efforts, ostensibly neutral advocacy organizations have often supported industry interests at the expense of their own constituencies," the report said.

Payments from Purdue Pharma, makers of oxycontin, accounted for about half of the funding.

Purdue Pharma Canada, which operates independently of its U.S. counterpart, provides financial support for Canadian patient advocacy groups. It was "a founding partner" in the creation of an influential Canadian patient advocacy group, the Canadian Pain Coalition (CPC), Purdue Canada told CBC News in an email, adding it has not supplied funding to the group since 2010.

The CPC has also accepted funding from other pharmaceutical companies over the years but was forced to dissolve in November when its funds dried up.

"Within Canada, pain has not been recognized as a national priority, and it's just really difficult to find funding," said Lynn Cooper, who was executive director of the coalition when it ceased operations.

The Chronic Pain Association of Canada is also listed by Purdue Canada as one of its grant recipients over the past two years.

"Last year, we had grant funding of $18,000 from the pharmaceutical industry. It went to arranging and holding meetings of leaders of local support groups in Toronto (I'm in Edmonton) and in Atlantic Canada," executive director Barry Ulmer said in an email, adding that the group is run by volunteers.

At Action Ontario, a group that advocates for people suffering from neuropathic pain, Lisa Hooper said all funding comes from industry. But she said the money comes with no strings attached. "We in no way, shape or form promote the drug companies," she told CBC News.

At the People in Pain Network, Richard Divine said he happily accepts industry funding because his group is run by volunteers on a shoestring budget. "We do not allow them to dictate what we do with it," he told CBC News, adding that Purdue has provided funds in the past but Pfizer and Merck have turned down their requests.

Researcher Batt says the groups may maintain their independence but they could get cut off if they don't play along.

"They're being cherry-picked," said Batt. "The companies will fund them as long as they're onside with the same point of view that the companies have. If they start to contradict what the companies are saying, they're going to get cut off."

Batt says patient groups can have a positive impact, "but they've been so compromised by their relationships, these close relationships that have developed between the groups and the companies, that they've undercut their own power to serve the interests of patients."

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