Provide cystic fibrosis patients with the drug Kalydeco
  • Petitioned British Columbia Health Minister Terry Lake

This petition was delivered to:

British Columbia Health Minister Terry Lake
Saskatchewan Health Minister Dustin Duncan
Manitoba Health Minister Erin Selby
Ontario Health Minister Deb Matthews
New Brunswick Health Minister Hugh Flemming
Nova Scotia Health Minister Leo Glavine
Newfoundland Health Minister Susan Sullivan
Alberta Health Minister Fred Horne
Prince Edward Island Health Minister Doug Currie
Health Ministers participating in the pan-Canadian Pricing Alliance

Provide cystic fibrosis patients with the drug Kalydeco

    1. Petition by

      Cystic Fibrosis Canada

  1.  
  2.   
June 2014

Victory

I am pleased to announce that a letter of intent has been entered into between the participating provincial/territorial jurisdictions (Quebec excluded) on a pricing agreement for Kalydeco in Canada. A letter of intent typically sets out the standard terms for health ministries and Vertex when considering provincial coverage for Kalydeco. In terms of next steps, each provincial health ministry will consider how Kalydeco will be funded in accordance with its own drug reimbursement framework. Over the coming weeks, we will be updating patients and families on developments in each province. On behalf of Cystic Fibrosis Canada, I want to thank all our advocates especially those patients and families personally impacted by Kalydeco for their tenacity and courage in the fight for Kalydeco. Thank you for having taken a minute of your day to sign this petition.

When Carys was 18 months old, she was diagnosed with a rare form of cystic fibrosis, and struggles with living life the way other kids do. Cystic fibrosis is a rare and fatal disease affecting the lungs and digestive system, and it makes her every breath a struggle. She describes it as feeling like she's underwater.

With this petition, seven-year-old Carys and her family, and dozens of other cystic fibrosis patients across Canada are desperately seeking access to Kalydeco, a breakthrough drug that targets the underlying cause of CF.  There is no known cure for CF, but with this drug, Carys could hope for a longer, healthier life and to avoid a lung transplant.

Even though Kalydeco was approved for use in Canada over a year ago, it's still out of reach for families like Carys’ because of its high price. The price negotiations between the provincial governments and the manufacturer Vertex Pharmaceuticals are taking far too long. Fortunately, Nova Scotia Health Minister Leo Glavine has taken a public stance in support of CF patients in his province – and we encourage others to do the same.

For patients like Carys who desperately need Kalydeco, every day that goes by without it means further irreversible lung damage, and that she'll eventually need a lung transplant.

This is now an issue of equitable access. For the past year, those with generous private health insurance have been able to access to Kalydeco and are seeing incredible results. Patients like Carys see this and know that they could be getting better too.Over the past year, the drug has been made available under public health insurance in the US, England, Scotland, Wales, Ireland, France and Germany! We need our Canadian provincial governments to take these negotiations seriously and come to a quick resolution.

On behalf of dozens of Canadian patients whose lives would be changed by having access to this miracle drug please sign our petition and share with your friends.

*The Pan Canadian Pricing Alliance (PCPA) conducts joint provincial/territorial negotiations for brand name drug products to combine the buying power of jurisdictions and increase access to treatment options by improve listing consistency across Canada. The PCPA includes all provinces with the exception of Quebec.

Recent signatures

    News

    1. Thank you! Patients are a crucial step closer to accessing Kalydeco

      Dear supporters,

      I am pleased to announce that a letter of intent has been entered into between the participating provincial/territorial jurisdictions (Quebec excluded) on a pricing agreement for Kalydeco in Canada. A letter of intent typically sets out the standard terms for health ministries and Vertex when considering provincial coverage for Kalydeco. In terms of next steps, each provincial health ministry will consider how Kalydeco will be funded in accordance with its own drug reimbursement framework. It was your support that got us here to the final stage. Ontario has already listed Kalydeco on their formulary and over the coming weeks, we will be updating patients and families on developments in each province.

      On behalf of Cystic Fibrosis Canada, I want to thank all our advocates, especially those patients and families personally impacted by Kalydeco, for their tenacity and courage in the fight for Kalydeco. Thank you for taking a minute of your day to sign this petition. Together, we are making a difference in the lives of Canadians battling cystic fibrosis. To continue on the journey with us as we ensure all Canadians who can benefit from Kalydeco get access – including Carys whose story you heard when you signed this petition – please stay updated via our Blog, or get more involved with our advocacy efforts here.

      Sincerely yours,

      Ken Chan
      Vice President of Advocacy, Research and Healthcare
      Cystic Fibrosis Canada Toronto, Ontario, Canada

    2. Vertex and provinces reach agreement on Kalydeco: CBC News

      Vertex and provinces reach agreement on Kalydeco

      It's been a long time coming, but some Canadians with cystic fibrosis should soon be able to begin treatment with an expensive drug that is considered a real game changer for their disease. Vertex Pharmaceuticals Inc., which makes the drug Kalydeco, announced late Monday that it had reached an agreement with provincial and territorial governments to enable public drug plans to cover the cost of the drug.

    3. Reached 45,000 signatures
    4. Nova Scotia Health Minister Leo Glavine Champions CF Patients

      Cystic Fibrosis Canada applauds the assertive commitment made today by Health Minister Leo Glavine to make the life-changing drug KALYDECO™ available to CF patients in Nova Scotia.

      In an interview with CBC’s Elizabeth Chiu, Minister Glavine stood up for CF patients, like Carys Nurse and Tim Vallillee, and committed to have his department take action to make Kalydeco available in Nova Scotia should the Pan-Canadian Pricing Alliance process not make progress by early next year.

      “Cystic Fibrosis Canada applauds Minister Glavine for his personal leadership in helping CF patients in Nova Scotia gain access to this powerful life-changing medicine,” said Ken Chan, Vice President, Advocacy, Research and Healthcare at Cystic Fibrosis Canada. “We strongly urge Health Ministers across the country to join the fight for speedy access to Kalydeco and make it a priority for those who need this drug regardless of which province they live in.”

    5. Reached 7,000 signatures
    6. CTV News Edmonton weighs in on this issue. Great coverage on our petition.

      The Alberta Health Minister spoke to CTV Edmonton News about the process but was unable to provide a time frame on when an agreement will be reached.

      CTV Edmonton News | Local Breaking News, Weather and much more

      CTV News Edmonton - Breaking news, local headlines and top stories from Edmonton, Alberta, Canada and around the world. Edmonton area Weather, Video, Consumer Watch, Your Health, MyNews, Contests and more.

    7. Reached 4,000 signatures
    8. Reached 3,000 signatures
    9. CTV Canada AM features our cause

      Canada AM: Dealing with exorbitant drug price

      Erick Bauer, who suffers from cystic fibrosis, and Cystic Fibrosis Canada's Ken Chan of, discuss the effectiveness and expense of the drug.

    10. CTV News broke this compelling story on Kalydeco in May 2013

      Expensive cystic fibrosis drug leaves most families out

      A drug that corrects a genetic mutation in some cystic fibrosis patients has shown remarkable results, but a high price tag in the hundreds of thousands of dollars puts it beyond the reach of most Canadians.

    11. Reached 2,000 signatures
    12. In less than 24 hours, 1000 supporters signed this petition

      "Tremendous!" is one way of describing the kind of support we have received. In less than 24 hours, 1000 people have joined our cause by asking Premier Redford and Minister Horne to show compassion for the roughly 100 CF patients who desperately need access to this drug. We need to keep the momentum going. Send them the message that they cannot put a price tag on the health and wellbeing of a citizen! Share this petition with your family, friends and colleagues. Use email, Facebook and Twitter. Keep up the great work.

      Ken Chan
      Vice President, Advocacy, Research & Healthcare
      Cystic Fibrosis Canada

    13. Reached 500 signatures

    Supporters

    Reasons for signing

    • Ellis D Chubbs LOURDE'DES BLANC SABLON, CANADA
      • about 1 month ago

      I would like to help the little kid's and adults with this terrible disease.

      REPORT THIS COMMENT:
    • Ellis D Chubbs LOURDE'DES BLANC SABLON, CANADA
      • about 1 month ago

      Because we never know when the same thing well happen to us or someone close to us and we will need support .

      REPORT THIS COMMENT:
    • Ellis D Chubbs LOURDE'DES BLANC SABLON, CANADA
      • about 1 month ago

      Ellis D Chubbs

      REPORT THIS COMMENT:
    • Ellis D Chubbs LOURDE'DES BLANC SABLON, CANADA
      • about 1 month ago

      Ellis D Chubbs I want to help people with this terrible disease" if I can lord help them please because with out his help it wont be done .

      REPORT THIS COMMENT:
    • Jean Rousseau COOKSHIRE-EATON, CANADA
      • 4 months ago

      Everyone should have access to proper care in Canada.

      REPORT THIS COMMENT:

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