Premier Kathleen Wynne
Legislative Building
Queen’s Park
Toronto ON M7A 1A1

Re: Funding of the Drug Kalydeco

As you are aware, I am the Chair of the Canadian Cystic Fibrosis Treatment Council an organization committed to ensuring access to life-saving treatments for patients with cystic fibrosis. I am also a 44 year old cystic fibrosis patient. I am fortunate that I have private insurance and have had access to Kalydeco since November 2012. The result for me and many others has been nothing short of remarkable.

However, Madi Vanstone, who you have met and too many others like her, have not been so lucky. Madi and others are forced to hold bake sales and use up their life savings to pay for a medication that makes a real difference for their lives.

You made a public commitment in the Ontario Legislative Assembly to Madi and the people of Ontario that this drug would be made available to her and others like her across the country. You left us with the impression that this was a priority and that it would happen quickly. We are now at 60 weeks or 15 months and counting since I met with Minister Matthews in January 2013.

I understand that another round of negotiations between Provincial Health Ministers and senior executives of Vertex Pharmaceuticals has been set for May 13th 2014. I insist that you take an active role to ensure that the negotiations come to a proper conclusion.

You are currently out around the province asking Ontarians to place their trust in your government and your ability to follow through on your commitments. As positive proof of the trust you are asking of all Ontarians, I ask you to ensure that this meeting fulfills your commitment to Madi Vanstone and others.

As a lawyer I am familiar with negotiations and how they can drag on. So in the meantime I have suggested to you and to Minister Matthews that Ontario and other provinces make Kalydeco available now to those that need it and ask the company to reimburse the difference when the price is ultimately negotiated(i.e. Drug plans pay the market price now and the company will rebate the difference.)

I also request the opportunity to brief your province’s delegation before they attend the planned negotiations. I ask you to instruct the Executive Officer of the Ontario Drug Plan to meet with my organization which includes leading Ontario doctors who treat cystic fibrosis patients every day. To date, our requests for a meeting have been refused.

A week ago you were quoted as saying to a group of high school students that:

“There’s nothing more inspiring than speaking with young people. I can’t wait to see the great leaders that they become. I believe that leadership is about making tough decisions – ones that provide opportunity now, as well as into the future. That’s what I will continue to do as Premier of Ontario.”

I call on you to provide Madi Vanstone and other children with this form of CF with a chance to actually live long enough to have the years to become great leaders. We need you to make the tough decisions that will provide them with an opportunity for a healthy life. I want to believe that is what you will do as Premier. Right now you have a chance to do so.

Power without a focus on people is an empty pursuit and I remain confident that you are better than that.

Yours truly,

Chris MacLeod

cc: Tim Hudak, Progressive Conservative Leader
Andrea Horwath, Leader of the New Democratic Party
Deb Matthews, Minister of Health
Beth and Madi Vanstone