FEDERAL ELECTION
WE NEED TO
SUPPORT CANADIANS
LIVING WITH CF!
TOOL KIT 2019
Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. There is no cure. CF causes various effects on the body, but mainly affects the digestive system and lungs. The degree of CF severity differs from person to person, however, the persistence and ongoing infection in the lungs, with progressive loss of lung function, will eventually lead to death in the majority of people with CF. Other typical complications caused by cystic fibrosis are: difficulty digesting fats and proteins; malnutrition and vitamin deficiencies because of inability to absorb nutrients; CF-related diabetes; liver disease, and sinus infections.
In 2017, there were 115 CF diagnoses; approximately one in every 3,600 children born in Canada has CF.
More than 4,300 Canadian children, adolescents, and adults with cystic fibrosis attend specialized CF clinics.
Medical management promotes significantly improved survival outcomes of what historically was a fatal chronic disease of children and young adults. Canadian CF patients attended over 19,000 CF-specific outpatient clinic visits in 2017; cumulatively they spent over 26,000 days in the hospital. To put things in perspective, that adds up to almost 80 years.i
Thanks to significant progress in treatment and care, the majority of children with CF will easily reach
adulthood. Nevertheless, of the 60 Canadian patients who died in 2017 of CF-related complications, half were under 33.6 years of age (the median age at death in 2017).ii
The most recent data for 2017 shows the estimated median survival age to be 52.3 years of age. This is an important statistic that continues to increase over time, implying the successful clinical management of CF in Canada. The interpretation is that a child born with CF in Canada in 2017 will have a 50% probability of living beyond 52.3 years of age.iii
Canadians with CF live 10 years longer than their U.S. counterpartsiv, likely due to the high standard of clinical care and access to medicines; however, this gap could close if Canadians with CF can’t access disease-modifying therapies through public drug plans like Americans with CF can. Ages of individuals living with cystic fibrosis today range from birth to almost 80 years old. The median age of all individuals reported on in 2017 was 22.8 years. Furthermore, 61% of individuals are over age 18 years of age. Year over year, for the last decade, the majority of those who live with CF are now adults, which brings new challenges in the world of work, wellness and well-being.
Cystic Fibrosis Canada is a national charitable not-for-profit corporation established in 1960, and is one of the world’s top three charitable organizations committed to finding a cure for CF. As an internationally recognized leader in funding innovation and clinical care, we invest more in life-saving CF research and care than any other non-governmental agency in Canada. We are committed to helping people with CF to live healthy and well.
Since its establishment, Cystic Fibrosis Canada has invested more than $261 million in leading research, innovation and care. As a result, Canadians with cystic fibrosis have one of the highest median survival rates in the world. As we work toward new treatments and ultimately a cure for this devastating disease, we also work to improve the services and supports people with CF need to live healthy and well.
i The Canadian Cystic Fibrosis Registry - 2014 Annual Report, The Canadian Cystic Fibrosis Registry - 2016 Annual Report, http://www.cysticfibrosis.ca/our-programs/cf-registry
ii Ibid.
iii Ibid.
iv Stephenson A.L., Sykes J, Stanojevic S, Quon B.S., Marshall B.C., Petren K, Ostrenga J, Fink A.K., Elbert A, Goss C.H. 2017. Survival Comparison of Patients With Cystic Fibrosis in Canada and the United States: A Population- Based Cohort Study. Anals of Internal Medicine. http://annals.org/aim/article/2609289/survival-comparison- patients-cystic-fibrosis-canada-united-states-population-based
ABOUT CYSTIC FIBROSIS
CYSTIC FIBROSIS CANADA
Charitable Registration Number / Numéro d’enregistrement d’organisme de bienfaisance : 10684 5100 RR0001
HIGHLIGHTS FROM THE CANADIAN CF REGISTRY
DEMOGRAPHICS
HEALTH OUTCOMES
CF CARE AND TREATMENTS
SURVIVAL
OVER 4,300 CANADIANS
OF 22.8 YEARS DIAGNOSES
NEWBORN SCREENING
66 11 ADULTDIAGNOSIS
NEW CF
115
ARE ADULTS
60.9%
18.7% TRAVELLED
MORE THAN 250 KM
TO RECEIVE CF CARE
WITH CF WITH MEDIAN AGE
MEDIAN FEV1
PERCENT PREDICTED OF FEMALE
ADULTS
HAVE A NORMAL WEIGHT
(BMI BETWEEN 18.5 AND 24.9 KG/M2)
68.7%
OF MALE ADULTS
63.5%
FOR CHILDREN
92.4%
FOR ADULTS
67.5%
48.7% OF CHILDREN UNDER 2 YEARS
45.9% OF BETWEEN 2-17 YEARSCHILDREN
ARE ABOVE
THE NATIONAL GOAL OF 50BMI PERCENTILE
COLLECTIVELY MORE THAN CLINIC VISITS
HOSPITAL DAYS 1,000
19,000 26,000
OVER
&ALMOST COURSESOF HOMEIV THERAPY
84.9%
TAKE PANCREATIC ENZYMES
TO DIGEST FOOD
& ABSORB NUTRIENTS
40.2% HAVE PSEUDOMONAS AERUGINOSA INFECTIONS
22.4%
HAVE CF-RELATED
DIABETES
OF THOSE TRANSPLANTED TODAY EXPECTED TO LIVE BEYOND
YEARS
50% 10.3
MEDIAN AGE OF SURVIVAL
ESTIMATED TO BE
52.3
YEARSOF AGEGet in contact with your candidates!
Go out and meet your local candidates, all of them! Reach out to their campaign offices. The best time to visit a campaign office is on Saturday or Sunday, when the canvassing teams go out and the candidate is more likely to be at their campaign office. Go out and speak with the candidate and provide them information on people living with CF.
Write a letter, send an email or make a phone call to all local candidates. Provide them or their campaign office with Cystic Fibrosis Canada’s key messages. Introduce yourself as a constituent. Ask their opinion on our key topics: Supporting a national pharmacare model that closes the access gaps for Canadians who need medicines, supporting the creation of a pan-Canadian rare disease strategy and expediting coverage for specialty drugs, such as speciality drugs for CF through national pharmacare to ensure equitable access to medicines. Be prepared to share your story and background information on CF. Most candidates will have little knowledge of CF or our community’s concerns.
Election campaigns provide many opportunities to promote our community’s messaging. Attend debates, town hall meetings, festivals, community celebrations or other local events candidates are attending.
Check all candidates’ websites and social media accounts for upcoming events. Go to these events!
If a candidate does not respond to your question be prepared to ask a follow-up question.
Engage in social media
Use social media to share information about support for those living with CF. Use Twitter, Facebook, Instagram, LinkedIn and YouTube to share messages about improving access to medicines, the need for a pan-Canadian rare disease strategy and the need for expediting coverage for specialty drugs through national pharmacare. Share updates or spread awareness by voicing your concerns on social media.
Follow your candidates on social media. Tweet, and share information on CF with local candidates.
Engage in media
Write a letter to the editor of your local news outlet and share your point of view. It must be no longer than 250-300 words. Make sure your letter is focused, concise and touches upon one of our major objectives (pan-Canadian strategy, or supporting a national pharmacare model that closes the gaps in access to medicines).
Call your local radio or television stations or community newspapers and ask for information about any reporters covering the election. Contact them to inform them of one of our major objectives.
For assistance with writing a letter to the editor, media relations or if you require media training; please contact Nicole Young, Director, Corporate Communications for Cystic Fibrosis Canada.
Email: [email protected]
Be prepared for campaign activity
Use backgrounder, key messaging and Q&A pages for door to door canvassing teams that approach your home.
Use key messages on campaign phone calls.
Take notes of what candidates and campaign teams say in response to your question. Share information with the advocacy team and report important notes from conversations with candidates in our Online Meeting Tracker.
FOUR WAYS TO GET INVOLVED
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BACKGROUNDER
Below is important background information to help identify our concerns with national pharmacare and the need for new mechanisms for evaluating drugs for rare diseases. This background information will help support your key messages.
NATIONAL PHARMACARE CONTEXT:
National Pharmacare is a proposal for Canada to have a universal drug program through which all Canadians can access prescription drugs. The 2019 federal budget proposed a single-payer model of national pharmacare, one in which all medicines are covered by the federal government, and all residents of Canada have equal access to a national pharmacare system.
IMPORTANT FOR THE CF COMMUNITY:
Some Canadians have a greater need to access medicines than others, and while some can afford medicines others cannot. Some people with rare diseases fall into this bracket. CF Canada supports an equitable approach and a pharmacare model that would cover those who are uninsured or under-insured, that way everyone can access the drugs they need. The national pharmacare report released in June 2019 notes that speciality drugs, including CF speciality drugs sometimes covered through provincial drug programs, will be added to national pharmacare after more commonly prescribed drugs. This is unacceptable for Canadians living with rare diseases which are often progressive, and have a high burden of disease. People with rare diseases don’t have years to wait to access these speciality drugs through a national pharmacare program.
THE PAN-CANADIAN RARE DISEASE STRATEGY CONTEXT:
Canada is one of the few developed countries in the world without a rare disease strategy to guide decisions around access to life-changing drugs for rare diseases. As a result there has been very limited access to some rare disease therapies. Canadian drug review bodies do not have processes to fairly assess drugs for rare diseases, nor do they have a common definition of rare diseases.
IMPORTANT FOR THE CF COMMUNITY:
Creating a rare disease strategy would mean that Canada would develop a drug review process that fairly assesses drugs for rare diseases, including some CF therapies. CF Canada suggests the creation of a pan-Canadian strategy;
a strategy where there is collaboration between the provincial and federal government. A national strategy implies that responsibility only lies with the federal government. We need all governments aligning and working together, especially to ensure that a national pharmacare program is sustainable.
NATIONAL PHARMACARE
The national pharmacare report released in June 2019 calls for a universal, single-payer public
pharmacare model. A model in which many Canadians will be able to access commonly prescribed drugs, and eventually speciality drugs.
National pharmacare, as positioned by the federal government, strives to be accessible and to provide Canadians with drugs based on medical need; however some Canadians have greater medication needs than others.
The report suggests that a universal single-payer public pharmacare can save billions by lowering the price of prescription medicines.
It recommends a single-payer model based off the premise that a ‘fill the gaps’ approach would have limited effect on lowering drug prices or creating fairness or uniformity in access across the country. The report notes that private drug benefits for workers are becoming less and less affordable.i
The council recommends a model in which all residents of Canada should have equal access to a national pharmacare system.
Access to drugs should be based on medical need, not ability to pay. The model embodies five fundamental principles in the Canada Health Act: Universal, Comprehensive, Accessible, Portable, and Public.ii
National pharmacare should have equitable access to prescription drugs.
The notion of “equality” is problematic. Treating everyone as the same – or equally – does not result in equity, nor is it fair. Some Canadians have a greater need to access medicines than others, and while some can afford medicines, deductibles and co-pays, others cannot.
Cystic Fibrosis Canada supports equitable and sustainable pharmacare models that improve access to CF drugs.
CF Canada supports a pan-Canadian pharmacare model that covers those who are uninsured or under- insured, one that will close the access gaps for Canadians who need medicines the most.
The advisory council recognized the growing number of high-cost specialty drugs used to treat chronic
conditions such as severe rheumatoid arthritis, multiple sclerosis and cancer.iii The report recognized there is a need for including speciality drugs in a national pharmacare program.
This could include specialty drugs that treat the symptoms of CF such as Pulmozyme, TOBI or Quinsair. We need to ensure that provincial CF drug programs – where they exist - are protected until equivalent or better coverage is available.
National pharmacare will focus on developing a formulary of common prescription medicines. There are two lists the council considered as a starting point for the Canadian drug agency to use for creating the initial medicines list:
World Health Organization’s Model List of Essential Medicines - which has approximately 450 drugs.
CLEAN Meds list - with 136 drugs - a list developed at St. Michael’s Hospital in Toronto.iv
The current federal government plans to provide more common prescription drugs as soon as possible and speciality drugs later. This objective could change depending on who wins the October 21st election.
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ACCESS TO DISEASE-MODIFYING THERAPIES AND A PAN-CANADIAN RARE DISEASE STRATEGY:
Orkambi and Symdeko, like Kalydeco (ivacaftor) before it, treat the underlying defect in CF; these are the only drugs on the market to treat the underlying defect at present.
All three of these disease modifying therapies improve lung function, and reduce the rate of pulmonary exacerbations in some people.
Exacerbations lead to frequent hospitalizations - hospitalizations interfere with school and jobs, for both adult patients and the parents of children with CF.
Canadian CF patients attended over 19,000 CF-specific outpatient clinic visits in 2017; cumulatively they spent almost 26,000 days in the hospital.v
All three drugs have been approved by Health Canada and have shown to work well in some people with CF.
However, only some Canadians with CF can access them.
The limited access to disease-modifying therapies in Canada is in direct contrast to other regulatory agencies internationally that have evaluated these drugs, including Health Canada, which has approved them for use in cystic fibrosis patients with specific mutations.
For instance, pricing and reimbursement agreements for Orkambi have been struck in Austria, Denmark, Germany, Ireland, Italy, and Luxembourg. Orkambi is publicly available to patients who meet eligibility criteria in the U.S. and France.
Our governments need to work together to develop a common, equitable process for evaluating drugs for rare diseases.
Limited access to life sustaining CF therapies such as Kalydeco and Orkambi are examples of a failed system that does not recognize the unique qualities of drugs for rare diseases.
There are an estimated 40 other disease-modifiers that are in the drug development pipeline that may face similar access challenges if the system does not change.
It is estimated that in 2-3 years there will be medicines that will treat [the underlying cause of CF in] 95% of the CF population.
While this is very promising news for the Canadian CF community, these medicines are no good if people with CF in Canada cannot access them.
Cystic Fibrosis Canada supports the development and implementation of a pan-Canadian rare disease strategy.
CF Canada suggests a pan-Canadian strategy as we want to encourage collaboration between the provinces and federal government.
Canada is one of the few developed countries in the world without a rare disease strategy to guide decisions around access to life-changing drugs for rare diseases.
Canadian drug review bodies do not have processes to fairly assess drugs for rare diseases, nor do they have a common definition of rare diseases.
The bodies at present that review drugs and make recommendations on whether or not governments should cover them are:
Canadian Agency for Drugs Technologies in Health (CADTH)
Québec - Institut national d’excellence en santé et services sociaux (INESSS) 2
Canada needs a strategy that includes a fair and equitable process for drugs for rare diseases.
Due to small numbers, it is very difficult to undertake large scale randomized clinical trials in rare disease populations, such as CF.
CADTH has noted through their review of some CF drugs, that sample sizes are too small and that they struggle to identify clinical significance due to data limitations.
The 2019 federal Budget promised the creation of a national strategy for high-cost drugs for rare diseases to help Canadians get better access to the effective treatments they need.
Budget 2019 proposes to invest up to $1 billion over two years, starting in 2022–2023, with up to $500 million per year ongoing.
The national pharmacare report released in June 2019 supported this recommendation.
Cystic Fibrosis Canada believes that people with CF and their loved ones have waited long enough for help. CF is a progressive and fatal disease: people with CF do not have time to wait. We need a pan-Canadian rare disease strategy now.
i Canada. Health Canada. A Prescription For Canada: Achieving Pharmacare For All. Final Report of the Advisory Council on the Implementation of National Pharmacare. Ottawa: Min. of Health, 2019.
ii Ibid.
iii Ibid.
iv Ibid.
v The Canadian Cystic Fibrosis Registry - 2014 Annual Report, The Canadian Cystic Fibrosis Registry - 2017 Annual Report, http://www.cysticfibrosis.ca/our-programs/cf-registryv
Use these key messages in your discussions with political candidates and their campaign teams. The most important messaging is bolded. More detail has been provided below should you need to elaborate or provide more information to candidates or campaigns teams that may ask you questions.
CONTEXT:
Canada is one of the few developed countries in the world without a rare disease strategy to guide decisions around access to life-changing drugs for rare diseases. Creating a rare disease strategy would mean that Canada would develop a drug review process that fairly assess drugs for rare diseases, a process we currently do not have at present. CF Canada suggests and supports the creation of a pan-Canadian strategy; a strategy where there is collaboration between the provincial and federal government, not a national strategy where responsibility only lies with the federal government.
The CF community needs a strategy that will improve access to life changing CF medicines now and in the future.
CF Canada’s vision is to create a world without CF. While we are working towards this vision, it is imperative that those living with CF gain access to the CF therapies that treat the disease (and) symptoms that would benefit them.
MESSAGE #1 ACCESS TO DISEASE-MODIFYING THERAPIES & A PAN-CANADIAN RARE DISEASE STRATEGY:
CF Canada calls for the creation of a pan-Canadian strategy to improve access to drugs for rare diseases.
A pan-Canadian strategy should include support from all provinces - governments, provincial and federal, as well as private insurers and employee benefits providers. All payers need to work together to address the gaps in access to medicines for Canadians with rare diseases.
CF CANADA RARE DISEASE STRATEGY RECOMMENDATIONS:
Improve access to treatment and care for people living with rare diseases by developing a common drug review and reimbursement approach to reduce duplication in the system and ensure timely and equitable patient access to drugs for rare diseases like cystic fibrosis.
Provide more opportunities for patient input. Patients should have the opportunity to voice their opinion in regulatory and decision-making processes. There should be patient representation in a proposed national expert panel for implementing a national rare disease strategy and the newly announced Canadian Drug Agency.
Incorporate precision medicine tools. The Cystic Fibrosis Individualized Therapy (CFIT) program at SickKids hospital holds great promise in determining which disease modifying therapies work in which individuals. If the promise this program holds turns into a full-fledged program, it could be included in the decision making process around access to disease modifying therapies.
The strategy must be sustainable and create an environment that provides incentives for rare disease research, drug development and create a strong market for new rare disease drugs and treatments.
KEY MESSAGES
MESSAGE #2 – NATIONAL PHARMACARE:
Patients who need access to speciality drugs cannot be left waiting years to access drugs through national pharmacare. Canadians with CF in particular have a high burden of disease and are required to take speciality drugs that treat the symptoms of the disease.
There are hundreds of therapies that aid in symptom management not all of which will be included in a national pharmacare program immediately.
in the categories of: antibiotics, supplemental vitamins, aerosol bronchodilators, mucolytics and pancreatic enzymes.
NATIONAL PHARMACARE RECOMMENDATIONS:
CF Canada supports a national pharmacare model that covers those who are uninsured or under-insured, one that will close the access gaps for Canadians who need medicines the most.
Expedite coverage for speciality drugs through national pharmacare to ensure equitable access to medicines.
The national pharmacare report notes that these drugs will be added after more commonly prescribed drugs, this is unacceptable as those living with rare diseases in Canada have a higher burden of disease.
KEY MESSAGES
MEETING WITH CANDIDATES
PREPARE IN ADVANCE:
Do some research on your candidates! All candidates have an online website with a biography and details of their visions and interests as a politician.
Understand the priorities of the party and the candidates and connect messaging with their priorities. Visit party webpages to see the full party platform.
EXECUTING THE MEETING:
Stay non-partisan. Our issues and concerns are non-partisan: we build relationships with all parties.
Do not give false information. Always fact check. Use briefing notes and messaging from the election tool kit. If you don’t know the answer to a question tell the candidate that you will get back to them, then contact us and we will provide follow up assistance.
Establish your key messages in the meeting. Make sure your priority message is addressed. Leave enough time for the candidate to ask questions.
Do not be afraid to tell your story to candidates: politicians need to hear from both our hearts and our heads.
Your story provides the emotional context needed to make our key public policy asks.
Take notes in the meeting. Make note of any commitments.
Do not tell elected officials that your issue is more important than any other.
MEETING WITH YOUR ELECTED OFFICIAL: QUESTIONS
The questions listed below can be used when speaking with candidates and campaign teams. Certain questions are more appropriate for certain situations, for instance shorter questions can be used when asking questions at debates or town halls. Longer questions are better used during face to face meetings, phone call conversations, and discussions with door to door canvassers.
If elected as my member of parliament will you encourage government to:
• Support a national pharmacare model that covers those who are uninsured or under-insured, one that will close the access gaps for Canadians who need medicines the most?
• Increase patient engagement in meaningful ways throughout the drug review and reimbursement system?
• Expedite coverage for speciality drugs through national pharmacare to ensure equitable access to medicines?
• Champion the creation of a pan-Canadian strategy for improving access to drugs for rare diseases?
• Reduce duplication in the system and ensure timely and equitable patient access to drugs for rare diseases?
What can your party provide to those living with CF? As my elected representative will you support equitable access to rare disease medications such as drugs for CF? How?
A national pharmacare model calls for equality of access to medicines. This is not the case for people with rare diseases like cystic fibrosis. As my elected representative, will you support a national pharmacare that helps those who are uninsured or under-insured, that way everyone can access the drugs that they need?
National pharmacare will focus on developing a formulary of common prescription
medicines, but those with CF and other rare diseases need access to disease modifying therapies. If elected will you support coverage for disease modifying therapies for rare diseases through national pharmacare?
If elected as my member of the parliament will you set up a meeting with me after the election to discuss these issues further?
Will your party support the creation of a pan- Canadian rare disease strategy and commit to working in partnership with provincial and territorial governments to address the gaps in access to medicines for Canadians with rare diseases?
If elected as my member of parliament will you support the creation of a common definition of rare disease and a pan-Canadian review process that fairly assesses rare disease drugs?
The national pharmacare report notes that speciality drugs will be added after more commonly prescribed drugs. Canadians with CF have a higher burden of disease and are required to take speciality drugs; they cannot be left waiting years to access them through national pharmacare. If elected will you support expediting coverage for speciality drugs through national pharmacare to ensure equitable access to medicines?
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The upcoming federal election is our opportunity to strengthen our collective voice. Together, we can take a stand and educate residents on the issues and concerns within our community and healthcare system. This election, we need to address the challenges facing our community and the models we need to improve access to medicines.
We want to ask candidates what they can do to help those living with CF, and what specifically their party can offer. Will their party support a national pharmacare model that closes the access gaps for Canadians who need medicines? Will their party support expediting coverage for specialty drugs through national pharmacare to ensure equitable access to medicines?
Will their party commit to developing and delivering a pan-Canadian rare disease strategy? Will they work in collaboration with other jurisdictions to create a common definition of rare disease and a review process for rare disease drugs? Will Improving quality life for Canadians with rare diseases be a part of their agenda?
We want elected officials to listen, engage with our community and ultimately make a commitment in fostering change for people with CF. We hope this election you become a leader in advocating for people living with CF.
SUMMARY
For more information contact:
Eric Mariglia 416-485-9149 x 305 [email protected]
SUPPORT THOSE LIVING WITH CF!
