By Josh Hall (Twitter: @Vancan19)

voices unheard

IBD patients say they weren’t consulted on forced switch to biosimilars

Dec 17, 2019 | 12:03 PM

Crohn’s and colitis patients currently on Remicade say they feel belittled by a lack of consultation leading up to the Alberta government’s decision to switch patients to new medicine (biosimilars).

Health Minister Tyler Shandro announced last Thursday that patients have six months to transition. But patients and doctors, along with Crohn’s and Colitis Canada, and Janssen Inc., the makers of Remicade, have lobbied for the last month against the move.

The argument against the switch doesn’t question the safety of biosimilars for new patients, but rather the concept of changing treatment for existing patients for no medical reason.

Those who are opposed also maintain that medical decisions should only be made between doctor and patient.

Some are also asking why the government is boasting about cost savings from the switch when Janssen has reportedly offered to deliver comparable savings for Remicade.

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Steve Buick, press secretary for Minister Shandro, says managing the provincial drug program through “one-off deals” would compromise work provinces do together by pooling buying power through the pan-Canadian Pharmaceutical Alliance.

“We may get a reduced price on one drug, but we have no way to know we’ll get the same reduction for other drugs,” he states. “We need certainty; our policy has to apply equally to all the drugs we manage today and the next one that gets approved tomorrow.”

Janssen Inc.’s offers were considered, but the same savings aren’t there, says Buick.

Varying levels of conversation with doctors and patient advocate groups have been reported, but one stakeholder seemingly left out has been patients.

rdnewsNOW spoke to six IBD patients currently on Remicade. Each says they were not consulted by the province.

“It’s ignorant. Why weren’t we consulted?” says Travis Dutkiewicz, a Red Deer resident with Crohn’s disease. “Why is the government telling us what’s good for us, while doctors are saying this isn’t the way to go? So many people are staunchly against this?”

Sherri MacLean, a Crohn’s patient from Calgary who’s been on Remicade since 2009, says she found out about the change through social media.

“It’s alarming that the government is making treatment decisions that’ll impact me and I have no say,” says the 39-year-old. “The decision to start a biologic wasn’t made lightly, and it has changed my life immensely for the better.”

“Given that our present government hasn’t embarked upon consultations with stakeholders regarding most decisions, I didn’t expect to be in a position to provide input,” says Red Deer’s Patti Yackulic, who saw her colitis go into remission after starting Remicade in 2016. “What’s frightening is that once again my bad track record with medications leads me to dread yet another severe drug reaction.”

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

Dr. David Ryan, a Red Deer gastroenterologist, says he has been bombarded with calls and emails from patients expressing strong anxiety about the change. He says gastroenterologists clearly don’t support it, as evidenced by the absence of quotes from any IBD doctor in the province’s announcement.

“The gastroenterologists of Alberta are committed to their patients, and if this is going to be mandated, we will do everything to ensure there is due diligence in terms of monitoring patients for adverse effects,” he says. “We are already working towards a better system of surveillance for patients going through this switch. But that’s going to cost the system in terms of the number of visits to doctors and time for patients to go for blood and stool tests.”

There will be an exemption process in which a doctor can apply for their patient to stay on Remicade, with each application peer-reviewed. But if the current process is any indication, Ryan feels there’s little reason for optimism that many will be approved.

“Patients are feeling abandoned. At this point they’re looking to their doctors to step in, and we will not let people fall through the cracks.”

Dr. Remo Panaccione, a world-renowned Calgary-based gastroenterologist said on Twitter this week that his sources in B.C. have told him only 1-in-400 have been approved for exemptions in that province.

“Alberta has become the most restrictive and most difficult place to treat Crohn’s in the country/world,” he tweeted. “Despite one of the highest prevalences in the world, the (Government of Alberta) turns its back on the voice of patients and experts.”

A study co-authored by Panaccione suggests there will be at least 63 avoidable surgical procedures directly due to the switch to biosimilars, and that there could be as many as 184.

Crohn’s and Colitis Canada says Shandro has “misguidedly dismissed this study.”