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Dr. David Ryan, a gastroenterologist in Red Deer, says the UCP government's proposal is not taking into account the opinions of doctors, and most importantly, patients. (rdnewsNOW)
"fundamentally wrong"

IBD patients “scared as hell” by UCP-proposed drug changes

Nov 22, 2019 | 6:15 PM

Crohn’s and colitis patients could suffer if the UCP government goes through with its plan to force patients onto alternative medications known as biosimilars.

Red Deer gastroenterologist Dr. David Ryan believes the Government of Alberta is not undertaking due process.

Revealed this week, a new policy is in the works which would have patients with Inflammatory Bowel Disease (IBD) involuntarily switch from their current biologic medication to a biosimilar.

“I don’t disagree with the concept of using biosimilars in clinical practice, but I do disagree wholeheartedly in an enforced unilateral non-medically indicated switch in therapy where patients and physicians are not consulted first and foremost. It’s fundamentally wrong,” says Ryan.

Research shows, he says, one in 11 patients who switch from a biologic to a biosimilar will suffer a setback. For AHS’ Central Zone, that means 30 people are likely to experience a potentially severe decrease in their physical health.

“There will be winners and losers. It’s a bit like rolling the dice,” Ryan says.

And he points out it isn’t solely physical health which IBD patients worry about, as mental health often takes a hit, be it with anxiety, isolation and/or depression, or overall uncertainty.

Red Deerian Travis Dutkiewicz, a Crohn’s patient, has been on Remicade – one of the more common biologics and most impacted drug by the incoming policy – for six years.

“This is scary as all hell. I went from 180 to 125 pounds at one point, was a cripple walking around barely able to stand up straight,” the 37-year-old says. “My kids know me as this 200+ pound guy who can lift anything, and all of a sudden, if this stuff doesn’t work like it’s supposed to, I’m a shell of the man I used to be. This is about someone who has no business putting their nose into something they know very little about.”

Ponoka resident and Crohn’s patient Steven Luxen, 29, is also on Remicade, which he receives intravenously every eight weeks.

“I’ve been in complete remission ever since I started on Remicade … why fix what ain’t broke?” Luxen asks. “Some people may be willing to do this, but I don’t want to take that chance because I know what I’m on works great.”

In a statement to rdnewsNOW, the Ministry of Health describes the cost of biologics as unsustainable.

“Like other provinces and countries, we’re planning to increase use of lower-cost, clinically equivalent biosimilars to ensure our drug coverage is sustainable and ensure every patient gets safe and clinically appropriate therapy,” says a spokesperson on behalf of Health Minister Tyler Shandro.

“Health Canada has clearly stated that biosimilars and their reference biologic drugs are equivalent in terms of quality, safety and efficacy … We reject the claim that biosimilars put patients’ lives at risk”

Dr. Ryan says that statement is uninformed and misses the point.

“I don’t believe the government has a fundamental role in the consulting room telling us what we can and cannot prescribe to our patients, especially in this situation where they’ve already allowed our patients to be on these treatments,” he says. “We don’t go to our doctors expecting Minister Shandro or Premier Kenney to be in the room with us.”

Similar policy was enacted in B.C. last May, where an approach was taken to more cautiously transition patients.

Government spending on biologics has gone from $20 million to over $200 million a year, the health ministry notes, though no reason is given. Though not all IBD patients take biologics, Crohn’s and Colitis Canada (CCC) says the number of Canadians with IBD is expected to jump from 270,000 to over 400,000 by 2030.

Biologics like Remicade are also used in the treatment of arthritis, among other things.

“Should a mandatory non-medical switch policy be implemented, Crohn’s and Colitis Canada is positioned to support patients affected by this policy,” the CCC says. “The care of patients with Crohn’s disease and/or ulcerative colitis remains our paramount concern. Patient/doctor choice remains the best option.”

Janssen Inc., which makes the biologics, has publicly offered to lower costs, but the ministry says it won’t negotiate prices in the media.

“We strongly believe the use of biosimilars in Canada should be based on what physicians determine is in the best interest of their patients rather than being driven by efforts that restrict treatment choice in any way,” the pharmaceutical says.

NDP Health Critic David Shepherd also raised the issue in the Alberta Legislature on Thursday (starting at 2:22:40) after Shandro met with patients and Calgary’s Dr. Remo Panaccione in Edmonton earlier this week. Shepherd says this is just another instance of the UCP not consulting with Albertans.

The health ministry would not elaborate on what cost savings they may stand to realize if Janssen’s prices remain the same, adding that a final decision is expected by the end of 2019.

Dr. Ryan, three other gastroenterologists, and two local nurses specializing in IBD therapy, will be signing a letter to be delivered to the health minister in the coming days.