Government needs to act…now

Melissa Verleg is a mother of two bright, healthy kids and a loving wife to her husband. She is an active member of her community in Verno. Melissa also has Cystic Fibrosis (CF). The median life expectancy for her, and other CF sufferers was 32 years of age in 2014. But radical innovation in the treatment for CF has led to the creation of two remarkable drugs – Kalydeco and Orkambi.

Melissa has been taking Orkambi since 2016 and has seen a dramatic improvement in her quality of life and health. She was lucky enough to get access to the drug through a private insurer since the government of BC refuses to cover the medication. But now her private insurer is also denying her access. For Melissa this is tantamount to a death sentence.

Canadians have led the fight for a cure to CF. It was a Canadian scientist that discovered the gene that causes CF in 1989. It was Canadians from coast to coast holding bake sales and raffles that raised the money to fund critical research into the disease. The results of our efforts are two life changing medications that target the basic defect that causes CF and halts the progression of the disease.

So why are Canadians now being denied access to the fruits of their labour? Because it turns out that in the fight for a cure, Canadians had to go up against their own governments.

Not too long ago CF patients were being denied access to Kalydeco. This medication works best for a small percentage of the CF population with a specific gene mutation. Advocates like Melissa fought hard to get provincial governments to cover the life saving drug and finally won the day in 2014. Now Kalydeco is covered across Canada for those CF sufferers it can help. Orkambi followed on the heels of Kalydeco and is able to treat a broader percentage of the CF population – approximately 25%. But once again provincial governments are digging in their heels and refusing to cover the medication.

Melissa, and many other CF patients across the country are being punished for their earlier success. Despite clear scientific evidence that demonstrates significant improvement for a quarter of CF sufferers, they are being denied access. After a brief glimmer of hope with Kalydeco, Canadian governments appear to be shutting the door on targeted therapies.

Like Kalydeco, Orkambi works at the genetic level to address the root cause of the disease. It is a revolutionary, personalized treatment approach, and that is at the heart of this fight. Like Kalydeco, Orkambi doesn’t work for everybody. But for those that it does work, the results are miraculous. The outdated systems that decide if a medication should be covered are used to a pill that makes everyone a bit better, not a targeted therapy that practically cures some. This is the future of medicine, and Canadian governments are clinging to the policies of the past.

It is time for the government of BC, and all Canadian governments, to stop being a blocker to innovative therapies and start enabling the best possible care alternatives for all patients.

Time is no longer on Melissa’s side. She has 3 days of medication left. I am asking Minister Dix and Premier Horgan to please act now and place this life saving CF drug on the British Columbia formulary so Melissa, and others who fought for a cure, can finally get access to it.

Chris MacLeod

National Chair, CF Treatment Society

A patient with CF who is currently on the life-saving drug Kalydeco

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