TORONTO – In its fight for “the best possible care and treatment” for the fewer than 100 people in the country suffering from atypical hemolytic uremic syndrome (aHUS), aHUS Canada has a very powerful ally: the company behind a pricey drug used to treat the rare disease.
Soliris costs half a million dollars for a year of treatment. aHUS Canada is trying to get the Ontario, B.C. and Alberta governments to fund the drug.
And the group is doing so with funding from Alexion Pharmaceutical, the company that makes Soliris.
In an email to Global News Alexion confirmed it provides unrestricted education grants to patient organizations, including aHUS Canada, but it wouldn’t say how much money it gives out.
“We have limited resources on our own, so this is the only way to go about the work that we are doing,” said Michael Eygenraam, vice chair of the aHUS board.
“We needed extra support with government advocacy. We’re patients with regular jobs, and I don’t work right now, but I work in engineering and that doesn’t give me any background in government advocacy. I’m a real newbie in this.”
Eygenraam lives with aHUS. He wants access to Soliris because he says it’s proven to stop the disease from attacking the body’s organs.
“(Alexion isn’t) telling us what to do. It’s completely up to us and we’ve made plenty of decisions on our own that just have nothing to do with the company at all. We don’t represent the company. We are completely on our own,” Eygenraam said.
WATCH: Drug policy researcher Alan Cassels explains how drug companies pay sick patients to promote their products.
Alan Cassels, a drug policy researcher with the University of Victoria, says drug companies have for many years financially supported groups that promote their products and position in the market place.
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“You’ve got a whole range of voices speaking in favour of the drug. You’ve got the manufacturer, often you’ve got the paid specialist, and you add on top of that the patient group or the individual patient and it sounds like there is a kind of chorus of voices even though, perhaps, all are paid for,” Cassels said.
The Canadian Association of PNH Patients successfully pushed for Soliris coverage in all provinces but Quebec – with the help of an unrestricted grant from Alexion.
The public relations firm Cohn & Wolfe worked with The Canadian Association of PNH Patients to get its message out and is now working with aHUS Canada.
“We are working with a PR firm that’s hired by the company (Alexion) because they have expertise. But that doesn’t mean we have to follow what they say or suggest, and they do suggestions because they have a lot of knowledge in advocacy. But it’s completely up to us and we’ve made many decisions completely independent of them,” Eygenraam said.
Eygenraam said he asked the PR firm to add a note on its website disclosing Alexion’s financial support.
“Most patient groups will strenuously deny they are being influenced in any way by these unrestricted grants. But clearly they’re there to emphasize the message the manufacturer wants. And in this case it’s lobbying for the coverage of the treatment,” Cassels said.
According to the 2012/13 Report Card for the Ontario Drug Benefit Program, drug spending made up 9 per cent, or $4.8 billion, of provincial health expenditures.
In an email an Ontario Health spokesperson told Global News Alexion first made a submission to the ministry to consider funding for Soliris to treat aHUS in 2013.
“The ministry is aware that many patient or disease groups receive at least some of their funding from drug companies,” the email reads.