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Volunteer Advocate

CF Drug Access and Advocacy Timeline

June 12, 2020 – The pan-Canadian Pharmaceutical Alliance (pCPA) agreed to enter negotiations with Vertex Pharmaceuticals on Orkambi and Kalydeco. Cystic Fibrosis Canada calls on governments and Vertex to get through these negotiations quickly and to work together to fast-track access to Trikafta. For more information please see the Q&A.

June 8, 2020 – The #cfcantwait MP Constituency Meeting Challenge concluded with advocates in the National Advocacy Network meeting with over 130 MPs. British Columbia advocacy team reaches 90% coverage in the challenge. 

June 1, 2020 - The announcement of the amended Patented Medicines Regulations was changed from July 1, 2020 to January 1, 2021. Thanks to our community’s good work and the work of others in the patient community, the PMPRB extended the implementation of the draft guidelines. 

May 25, 2020 - Saskatchewan advocacy team launches a phone call campaign for the week of May 25th-29th calling on volunteers to call federal Health Minister Patty Hajdu’s office asking the government to stop the PMPRB changes and fast track access to Trikafta. 

April 20, 2020 – Alberta advocacy team meet with Alberta Minister of Health Tyler Shandro to discuss PMPRB, and improving access to disease modifying therapies. 

April 1, 2020 – Cystic Fibrosis Canada launches the #cfcantwait Constituency Meeting Challenge. The goal of the challenge is to meet with as many of the 338 federal MPs as possible during CF Awareness Month in May. Advocates called on the federal government to stop the changes to the PMPRB, and to commit to fast-tracking access to Trikafta.

March 11, 2020 – Cystic Fibrosis Canada hosted a press conference in Ottawa at Parliament Hill, and at provincial legislatures in Regina and Toronto, calling  on the federal government to  stop the implementation of  proposed changes to the Patented Medicines Prices Review Board (PMPRB) and reconsider the changes so that access to new drugs like Trikafta will not be delayed or denied. We also sought provincial support for these initiatives.

March 2, 2020 – CF Canada leaders meet with the PMPRB to demand that they halt the proposed changes, which would negatively impact access to Trikafta for people living with cystic fibrosis.

February 29, 2020 – On Rare Disease Day, CF Canada applauds Alberta’s decision to expand coverage for Kalydeco. The government of Quebec announced the establishment of an Advisory Committee on rare diseases. 

February 28, 2020 – CF Canada shines a light on how the current drug landscape in Canada affects the lives of people living with CF.

February 26, 2020 – CF Canada CEO Kelly Grover joins others from the CF community at Queen's Park, Ontario, to call on the Ontario government to negotiate a deal with Vertex

February 25, 2020CF Canada chief scientific officer John Wallenburg tells the Canadian Press that the prospect of policy adjustments does little to quell the climate of "uncertainty" that has big pharma spooked and patients fearing for their lives. 

February 21, 2020CF Canada calls on the federal government to halt proposed regulatory changes that will prevent Canadians with CF from accessing the medicines they need. 

February 20, 2020 – PMPRB indicates that it “is contemplating significant changes” to its draft guidelines in light of stakeholder feedback.

February 14, 2020CF Canada makes a formal submission to the PMPRB, objecting to pricing changes that will prevent manufacturers from selling their medicines in Canada. 

February 12, 2020CF Canada called on the CF community to make their views known to the PMPRB. More than 800 people downloaded our letter template and key messages

February 6, 2020 – CF Canada holds an online Q&A on our advocacy efforts

February 3, 2020Life Sciences Ontario study reveals new federal drug pricing rules are already delaying product launches

February 2020 – CF Canada made a submission to the Ontario budget process, calling for access to CF drugs and pointing out that this is aligned with the objectives of the government.

February 2020CF Canada’s CEO Kelly Grover met with elected officials in Manitoba and with the executive director of the Manitoba Provincial Drug Program. She continues to work with advocates in the CF community to improve access to CF symptom management and modulator drugs. The Minister of Health did not accept our invitation to meet.

January 31, 2020 – 47,000+ people have signed CF Canada’s petition calling on the federal government to create a rare disease strategy to ensure that new medications get to the people who need them. 

December 2019 – Wrote and met with provincial ministers of health and drug managers, calling on them to expand funding for the modulators that are already approved for use in Canada and to reduce the barriers to access Orkambi.

December 2019 – Called on Vertex, through letters, messages and meetings with staff, to apply for Health Canada approval of Trikafta.

December 2019 – CF Canada held an online workshop to support members of the community to meet with elected representatives, staff, and public servants and to reach out to the news media.  

December 10 2019 - CF Canada attends Patented Medicine Prices Review Board (PMPRB) Civil Society Meeting. Tells PMPRB that while we support lower drug prices, the pendulum has swung too far too fast and that access to game-changing medicines like Trikafta has been compromised.

November 22, 2019 – CF Canada initiated a letter-writing campaign to push provincial elected leaders for access to new medicines for cystic fibrosis. 

November 22, 2019 – Called on Vertex and Health Canada to start a special access programme for Trikafta – and that programme has now been established. 

November 2019 – CF Canada advocates hard to influence proposed changes to the Patented Medicine Price Review Board (PMPRB), which put access to game-changing medicines like Trikafta at risk. 

November 7, 2019CF Canada hosts a Facebook Live event to update the community on our post-election advocacy efforts, continuing to push for a rare disease strategy that fairly assesses drugs for rare diseases, including cystic fibrosis.

November 4, 2019 – CF Canada launches the social media campaign #CFcantwait and urges provincial governments and Vertex to have the necessary conversations and submit the applications to bring these medications to Canada.

October 31, 2019 – CF Canada discusses advocacy strategies with other CF patient organizations world-wide, learning what did and didn’t work for them.

October 24, 2019
– The U.K. strikes a deal with Vertex to pave the way for public drug plans to cover Orkambi in England. 

October 21, 2019 – The U.S. FDA approves Trikafta after designating it a breakthrough therapy and fast-tracking its application. A triple-combination, disease-modifying drug, Trikafta can treat 90% of people with cystic fibrosis. 

October 6, 2019 CF Canada launches a media campaign to share the stories of people whose lives have been transformed by disease-modifying treatments such as Symdeko and Trikafta and to push for access.

October 2, 2019CF Canada calls on federal candidates to create a rare disease strategy and launches a petition to improve access to drugs for rare diseases. 

For more information on our advocacy work please contact advocacy@cysticfibrosis.ca