Saskatchewan vows to list potentially life-saving cystic fibrosis drug should negotiations be successful

Federal, provincial and territorial alliance tasked with negotiating drug access for entire country announced start of talks for Orkambi and Kalydeco last Friday

The Saskatchewan Legislature is shown. © Submitted photo

Two drugs that could mean the difference between life and death for people diagnosed with cystic fibrosis (CF) will be made available in Saskatchewan if purchase price negotiations are successful, the province has said.

Late last week the pan-Canadian Pharmaceutical Alliance (pCPA), an alliance of federal, provincial and territorial governments responsible for negotiating access to drugs for Canada’s provinces and territories, agreed to begin negotiations on two drugs, Kalydeco and Orkabi. The drugs are the first and second generation of what is referred to as a CFTR-modulator, which has shown success in treating the defective gene causing CF, as opposed to existing medications that only treat symptoms of the disease.

Cystic fibrosis, or CF, is a fatal genetic disease affecting Canadian children and young adults. It has no cure, and causes many detrimental side-effects on the body, including on the digestive system and lungs.

Typical complications include difficulty digesting fats and proteins, malnutrition and vitamin deficiencies, progressive lung damage, diabetes and sinus infections. CF Canada estimates that one in every 3,600 children born in Canada has CF.

Lung disease eventually worsens to where the person is disabled. According to the US government, the average life span for people with CF who live to adulthood is 37 years. Death is most often caused by lung complications.

While CF Canada praised the decision as a positive first step Friday, the drugs are still a long way from reaching Canadians who need it.

While the province had not responded to questions regarding its plans should negotiations be successful by Friday evening, a statement from the Ministry of Health was provided Tuesday afternoon.

In that statement, the province said Kalydeco, which has been successfully negotiated for by the pCPA, is currently listed as an exception status drug but that the designation is in the process of being expanded.

The province also said they list Orkambi on a case-by-case basis for children who are rapidly deteriorating.

Should pCPA negotiations be successful, though, “Saskatchewan will be updating the listing status of Orkambi and Kalydeco on the Saskatchewan Formulary,” which lists medications covered by the drug plan, the ministry said.

“Our government has heard interest from residents in improving access to cystic fibrosis medications, and we have been working closely through pCPA to move these discussions forward to help meet the need for cystic fibrosis drug treatments.”

Critics say the exceptional drug process is too restrictive, and between the three provinces that offer it, only one CF patient has ever been successful in accessing the drugs.

A report due to be released next Tuesday by an Ontario-based CF patient who originally hails from Saskatoon is expected to lay out the rising numbers of CF diagnoses in the province.

That report’s author, Chris MacLeod, said that despite the growing caseload, funding and support for treatments, such as the CFTR-modulators, hasn’t kept pace.

He intends to send the report to all MLAs and registered political parties in the province ahead of this fall’s provincial election.