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Volunteer Advocate

CF Drug Access and Advocacy Timeline

March 10, 2021 - The second meeting of the Ontario caucus on access to Trikafta meets with CF Canada, CF Get Loud and the CF Treatment Society to discuss access in Ontario

February 28, 2021 - Members of the CF Canada led federal all party caucus on emergency access to Trikafta send letter to Health Minister Patty Hajdu, thanking her for expediting the Health Canada review and calling on her to provide the broadest indication possible and to work with the provinces to fast-track coverage

February 24, 2021- CF Canada provides patient group submission to INESSS, the Quebec body that conducts cost-effectiveness studies on behalf of the province

February 12, 2021 - CF Canada provides patient group submission to CADTH, informed by survey results from almost 1500 Canadians with CF. CF Canada’s Health Advisory Council and members of our clinical trials network, CF CanACT, provided physician submissions

January 19, 2021 - CF Canada opens a survey to inform the submission to CADTH, INESSS and BC Pharmacare for the cost effectiveness reviews of Trikafta

December 23, 2020 - Health Canada accepts Trikafta for review and updates their website. This begins the 180 day deadline for a fast tracked Health Canada review, though this could change if Health Canada needs to request additional information.

December 21, 2020 - The Food and Drugs Administration (FDA) approves Trikafta in the US for an additional 177 rarer mutations.

December 18, 2020 - Trikafta continues to progress rapidly through the Canadian drug review and reimbursement system with CADTH listing the drug open the website for an aligned review and open consultations from the community

December 10, 2020 - A Health Canada official confirms the Special Access Program is being extended for children ages 6 and up

December 10, 2020 - Health Canada's Supriya Sharma and public policy expert William Dempster hosts a CF Canada webinar on Access to Modulators: Modulators in Canada’s Healthcare system.

December 4, 2020 - Health Canada receives the submission to review Trikafta

December 3, 2020 - CF Canada launches a new series of advocacy webinars called Access to Modulators. The first session focused on Understanding CF Modulators

November 20, 2020 - CF Canada hosted the first meeting for the all party emergency access to Trikafta caucus. This caucus was an outcome of an all party emergency meeting with Members of Parliament and Senators on access to Trikafta. The meeting was joined by Get Loud and the Cystic Fibrosis Treatment Society

November 17, 2020 - Health Minister, Patty Hadju, confirms that Health Canada has granted a ‘priority review’ for Trikafta once it has been submitted by the manufacturer

November 12, 2020 - CF Canada hosts a webinar taking questions from the CF community about what the decision to bring Trikafta to Canada means and the drug review and reimbursement process Trikafta will go through before it reaches the hands of Canadians who need it

November 9, 2020 - CF Canada announces a decision has been made by the manufacturer to bring Trikafta to Canada. The CF community both celebrates and mournes that it did not come soon enough

November 6, 2020 - CF Canada sends submission to The Standing Committee on Health (HESA) for the study of the final PMPRB guidelines

October 29, 2020 – CF Canada and the Protect Our Access coalition place an op-ed in the Toronto Star

October 26, 2020 – The Standing Committee on Health (HESA) unanimously votes through a motion to provide further consultations on the PMPRB guidelines

October 23, 2020 – CF Canada hosts a historic all party meeting on access to Trikafta. Approximately 30 MPs and Senators from all parties attended and committed to an all party approach for access to Trikafta

October 23, 2020 – the PMPRB release their final update to the revised guidelines

October 22, 2020 – CF Canada joins a coalition of 13 health charities and patient groups to launch a campaign to ensure Canadians aren’t denied access to breakthrough drugs, like Trikafta

October 21, 2020 – 1 year anniversary since the FDA approved Trikafta in the US

October 9, 2020 – CF Canada met with Conservative Health Critic, Michelle Rempel, and other key Conservative party members about access to Trikafta

October 7, 2020 – CF Canada met with the Minister of Health, Patty Hadju. In the meeting she agreed to fast track Trikafta and work with the provinces to expedite pricing negotiations. CF Canada also implored her to reconsider the changes to the PMPRB that are negatively impacting access to innovative new drugs in Canada

September 30, 2020 – CF Canada presented in court alongside Chris McLeod from the Cystic Fibrosis Treatment Society and the Canadian Organization for Rare Diseases (CORD). The court case challenged the power of the PMPRB to set maximum prices in Canada

September 24, 2020 – CF Canada launches a campaign for writing letters to editors to raise awareness of the CF community’s fight to gain access to Trikafta. Two letters are published

September 22, 2020 – CF Canada shares an open response to any Canadian Government Officials pointing to Vertex’s lack of application to Health Canada as the reason that Trikafta is not in Canada, instead of taking action to bring the life changing drug to Canada

September 17, 2020 – more than 70 clinicians from across Canada sign an open letter to the Canadian Government imploring them to fix Canada’s broken drug reviews and reimbursement system

September 15, 2020 – CF Canada meets with Elizabeth May, MP and leader of the Green Party 2006 - 2019

August 24, 2020Canadian research is released showing that access to Trikafta in 2021 could reduce the number of people with CF living with severe lung disease by 60% and reduce deaths by 15% by 2030.

August 4, 2020 – over 1,850 people submit letters to the PMPRB consultations in support CF Canada’s recommendations

July 30, 2020 – CF Canada hosts a live webinar answering questions from the CF community about the revisions to the PMPRB guidelines and how they could impact access to medicines in Canada

July 28, 2020 – CF Canada submits a response to the PMPRB revised guidelines

June 30, 2020 – The UK confirmed a deal with Vertex for Trikafta

June 26, 2020 – the European Medicines Agency (EMA) grants marketing authorization for Trikafta for people 12 years and older

June 19, 2020 – the PMPRB releases revised draft guidelines and opens a public consultation period. In the notes on the revision the PMPRB commented that they received over 900 letters from the community from an initiative spearheaded by CF Canada

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, 2020 – Life 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, 2019CF 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 


Historical advocacy timeline

September 2019 - CF Canada coordinates physician input into Ontario Orkambi review and submits recommendations to the Ontario Ministry of Health. Despite continued pressure, as of March 26, 2021we were still waiting for the Ministry to respond to the recommendations.

September 2019 - The Liberal Party of Canada and Conservative Party of Canada support implementation of a rare disease strategy in their election platforms.

September 2019 - CF Canada releases its federal election campaign calling for a rare disease strategy and launches “Whatever it Takes” campaign. Thousands of letters calling for a rare disease strategy are sent to candidates across Canada.

August 2019 – After five long years, price negotiations for the remaining mutations indicated by Health Canada for Kalydeco successfully concluded. CF Canada begins work to pressure governments to implement coverage quickly.

June-August 2019 - CF Canada and members of the National Advocacy Network participate in National Pharmacare consultations right across Canada, calling for a rare disease strategy that will provide a fast and fair review and reimbursement process for precision medicines.

June 2019 - CF Canada meets with the pan-Canadian Pharmaceutical Alliance regarding public coverage of Kalydeco for those who have mutations that are not publicly covered.

May 2019 - At a CF Canada lobbying day, Ontario Health Minister Christine Elliott promises to review Orkambi access criteria and to share review with other provinces.

March 2019 - Federal Budget 2019 commits to a rare disease strategy to cover drugs for rare diseases and precision medicines, committing to $500 million per year starting 2022/23.

February 2019 – Saskatchewan, Alberta and Ontario establish criteria to prescribe Orkambi on an exceptional, case-by-case basis for children 6-17 years old with cystic fibrosis. CF Canada welcomes the decision and calls for all provinces to follow suit, but continues to push for more inclusive criteria, including access for adult patients.

January 24, 2019 - CF Canada hosts There is Promise in the Pipeline: Now How do We Pay For It?, a forum on how predictive precision programs such as the Cystic Fibrosis Canada-SickKids Program for Individualized CF Therapy (CFIT) can inform drug reimbursement decision-making. Leaders from Health Canada, the Patented Medicines Prices Review Board (PMPRB), the Canadian Agency for Drugs and Technologies in Health (CADTH), the pan-Canadian Pharmaceutical Alliance (pCPA) and the Canadian Life and Health Insurance Association (CLHIA) attend and present on their initiatives related to precision-medicines. Manulife and Sunlife attend and continue to express interest in the program.

November 2018 - During a CF Canada lobbying day Saskatchewan Premier Scott Moe and Health Minister Jim Reiter announce that they will provide access to Orkambi to those who need it within 90 days and will reach out to other provinces to try to bring them along.

Thursday 4 October 2018 - the Canadian Agency for Drugs and Technologies in Health (CADTH) recommended that Orkambi not be reimbursed by federal, provincial and territorial drug programs for the second time.

July 2018 - CF Canada meets with the Canada Life and Health Insurance Association (CHLIA) membership companies to discuss how a program like The Cystic Fibrosis Canada-SickKids Program for Individualized CF Therapy (CFIT) can inform drug reimbursement decision-making. following this, Manulife and Sunlife take interest in program.

May 2018 - CF Canada meets with the Canada Life and Health Insurance Association (CHLIA) leadership to discuss how a program like The Cystic Fibrosis Canada-SickKids Program for Individualized CF Therapy (CFIT) can inform drug reimbursement decision-making.

December 2017 - March 2018 - Three petitions for Orkambi are tabled in provincial legislatures - British Columbia, Ontario, and Saskatchewan.

October 2017 - Cystic Fibrosis Canada and local CF advocates host a BC Legislative Rally for access to Orkambi.

April 2017 - CF Canada launches the National Advocacy Network, a program that trains and supports the development of advocates across the country. Starting with 17 volunteers in British Columbia, this program now has over 250 advocates across the country who advocate to government for better access to CF medications and quality CF care.

October 26, 2016 - CADTH recommends that Orkambi not be reimbursed for the treatment of cystic fibrosis (CF) in patients aged 12 years and older who are homozygous for the F508del mutation in the cystic fibrosis transmembrane conductance regulator (CFTR) gene.

January 26, 2016 – Health Canada approves Orkambi, a life-changing drug that targets the underlying cause of cystic fibrosis in patients with two copies of the F508del mutation in the CFTR gene.

December 15, 2015 - Cystic Fibrosis Canada provides a submission to CADTH on behalf of the CF community in Canada for CADTH’s review of Orkambi

November 2015 - The European Commission approved Orkambi for use in people with two copies of the F508del mutation ages 12 and older.

July 2015 - Orkambi obtained approval from the FDA in the USA for use in people with two copies of the F508del mutation ages 12 and older.

March 13, 2015 - Health Canada approves Kalydeco for patients with the R117H mutation

December 19, 2014 – CADTH recommends covering Kalydeco for additional 9 mutations.

July 22, 2014 - Cystic Fibrosis Canada submitted patient input to Canada’s Common Drug Review for the additional mutations

June 16, 2014 - the Pan-Canadian Pharmaceutical Alliance (pCPA) completes pricing negotiations with the manufacturer of Kalydeco for people with the G551D mutation. Unfortunately, the additional gating mutation indications did not make it through the pCPA negotiations at that time.

June 6, 2014 - Health Canada approves Kalydeco for patients with 9 additional mutations

March, 2013 – Kalydeco becomes available through publicly funded drug programs for patients age six and older who have the G551D mutation in the CFTR.

November 2012 - Health Canada approved Kalydeco for use in Canada for patients with the G551D mutation