LETTERS: A call for support to help save a son’s life

With a bonus that negotiations could save taxpayers money

To the Expositor:

I am writing to you today in regards to Orkambi. Orkambi is a drug which treats the underlying defect for many of those suffering from cystic fibrosis, specifically those with the F508del mutation. This accounts for over 700 people in Ontario.

My 10-year-old son Benjamin has cystic fibrosis (CF). CF is the most common fatal genetic disease affecting Canadian children and young adults. Ben has already undergone a non-transplant surgery and frequently deals with lung infections that severely curtail his enjoyment of life.

The approval process for Orkambi has taken longer than expected. A similar drug called Kalydeco was made publicly available in Ontario recently. Kalydeco has the same success as Orkambi in reducing or eliminating many symptoms for many individuals taking it. Kalydeco works like Orkambi, except that it is targeted at a different cystic fibrosis mutation.

Orkambi currently costs more than $250,000/year. Many major private insurance providers cover Orkambi. Many western nations have negotiated pricing agreements. France, Ireland and the United States make Orkambi publicly available for those who meet eligibility requirements.

While Health Canada has already approved Orkambi, the Canadian Agency for Drugs and Technologies in Health, the Common Drug Review, the Committee to Evaluate Drugs and the pan-Canadian Pharmaceutical Alliance must also approve the drug.

Negotiations can significantly reduce the current cost. The long term benefits of drugs like Orkambi can be measured in fulfilling years lived, and in a more practical sense, money saved for the taxpayer by way of less hospital visits and expensive procedures that will only increase as time moves on for untreated individuals.

Orkambi may alleviate many of Ben’s symptoms and prevent much future lung deterioration, however, damage already present cannot be undone. Transplants are often the last resort for individuals with CF. Please consider to act as a voice for my son and others like him. Please contact Christine Elliot to request that Orkambi is made publicly available as soon as possible.

Minister of Health Christine Elliott
Hepburn Block
10th Flr, 80 Grosvenor St
Toronto ON M7A2C4


Zak Nicholls
Little Current