Responses to Canadian Cystic Fibrosis Treatment Society 2019 Election Candidate Questionnaire

Candidate Candidate For a life-shortening disease such as Cystic Do you support negotiating with a Do you agree with the federal Party Name Fibrosis, do you believe the Government of pharmaceutical manufacturer for government’s initiative to provide Alberta should take action to prevent this the best price in order to provide financial assistance to Canadians inequity from continuing? full access to life-saving CF with rare diseases and potentially medication in Alberta? those with CF? Alberta Thank you for reaching out to me on this very important issue. I believe you have received the response to the survey from United our party however, I want you to know that this issue is extremely important to me as I have several friends who suffer Conservative from rare diseases and understand how many drug protocols do not include research proving efficacy for rare diseases. If Party elected, I will take a personal interest in this issue to ensure that those who suffer can access the drugs they need.

NDP, Leader Rachel Notley and the NDP know that for Rachel Notley and the NDP are We want Albertans with rare Albertans with cystic fibrosis and their fighting for a high-quality public diseases to have access to the best families want and deserve the best treatment healthcare system for all Albertans. care available. If reelected, we will available. The NDP government is committed We know that patients and families work with the federal government to the same. That is why when the Canadian with struggling with illness want the to establish a strategy on high-cost Agency for Drugs and Technologies in Health best care available and that is what drugs to support Albertans with issued a “do not list” recommendation, we the NDP has been fighting for. On an rare diseases access the drugs they did our own research, consulting with cystic ongoing basis we work with other need. fibrosis specialists. These specialists provinces to find the best deal for recommended that Orkambi be used on an Albertans needing medication. exceptional, caseby-case basis for patients who meet specific criteria. We will continue to monitor the development of new medications For patients and their families looking for the and changes to existing medications. best treatment, we understand the If recommendations change or a disappointment in this decision. If re-elected, new drug becomes available, we are we will continue to invest in our healthcare committed to working with our system to ensure that Albertans get high- partners throughout the country to quality care and we will continue to monitor ensure the fair pricing of and Orkambi and the funding status will be re- consistent access to rare disease evaluated if appropriate. drugs.

NDP Party Todd Russell For patients and their families looking for the Rachel Notley and the NDP are We want Albertans with rare best treatment, we understand the fighting for a high-quality public diseases to have access to the best disappointment in this decision. If re-elected, healthcare system for all Albertans. care available. If re- elected, we we will continue to invest in our healthcare We know that patients and families will work with the federal system to ensure that Albertans get high- with struggling with illness want the government to establish a strategy quality care and we will continue to monitor best care available and that is what on high-cost drugs Orkambi and the funding status will be re- the NDP has been fighting for. On an evaluated if appropriate. ongoing basis we work with other to support Albertans with rare provinces to find the best deal for diseases access the drugs they Albertans needing medication. We need. will continue to monitor the development of new medications and changes to existing medications. If recommendations change or a new drug becomes available, we are committed to working with our partners throughout the country to ensure the fair pricing of and consistent access to rare disease drugs. NDP Party Ricardo We want Albertans with rare diseases to have access to the best care available. If re-elected, we will work with the federal Miranda government to establish a strategy on high-cost drugs to support Albertans with rare diseases access the drugs they need. NDP Party John Archer Rachel Notley and the NDP know that for Rachel Notley and the NDP are We want Albertans with rare Albertans with cystic fibrosis and their fighting for a high-quality public diseases to have access to the best families want and deserve the best treatment healthcare system for all Albertans. care available. If re-elected, we will available. The NDP government is committed We know that patients and families work with the federal government to the same. That is why when the Canadian with struggling with illness want the to establish a strategy on high-cost Agency for Drugs and Technologies in Health best care available and that is what drugs to support Albertans with issued a “do not list” recommendation, we the NDP has been fighting for. On an rare diseases access the drugs they did our own research, consulting with cystic ongoing basis we work with other need. fibrosis specialists. These specialists provinces to find the best deal for recommended that Orkambi be used on an Albertans needing medication. We exceptional, case- by-case basis for patients will continue to monitor the who meet specific criteria. development of new medications and changes to existing medications. If recommendations change or a new drug becomes available, we are committed to working with our partners throughout the country to ensure the fair pricing of and consistent access to rare disease drugs. NDP Party Shannon Rachel Notley and the NDP know that for Rachel Notley and the NDP are We want Albertans with rare Dunfield Albertans with cystic fibrosis and their fighting for a high-quality public diseases to have access to the best families want and deserve the best treatment healthcare system for all Albertans. care available. If re- elected, we available. The NDP government is committed We know that patients and families will work with the federal to the same. That is why when the Canadian with struggling with illness want the government to establish a strategy Agency for Drugs and Technologies in Health best care available and that is what on high-cost drugs to support issued a “do not list” recommendation, we the NDP has been fighting for. On an Albertans with rare diseases access did our own research, consulting with cystic ongoing basis we work with other the drugs they need. fibrosis specialists. These specialists provinces to find the best deal for recommended that Orkambi be used on an Albertans needing medication. We exceptional, case- by-case basis for patients will continue to monitor the who meet specific criteria. development of new medications and changes to existing medications. For patients and their families looking for the If recommendations change or a best treatment, we understand the new drug becomes available, we are disappointment in this decision. If re-elected, committed to working with our we will continue to invest in our healthcare partners throughout the country to system to ensure that Albertans get high- ensure the fair pricing of and quality care and we will continue to monitor consistent access to rare disease Orkambi and the funding status will be re- drugs. evaluated if appropriate. NDP Party Robyn O’Brien My dear friend and artist Curtis passed away from CF a few years ago and I try and walk for him every year with his family. Alberta Tom Grbich Yes Yes Yes Independence Party Yes, absolutely Yes and it makes perfect sense Yes for sure but what's really especially if it improves access and needed is also for Alberta to availability. seriously work on our own "rare illnesses strategy" Alberta Party Yes Yes Yes Ron Reinhold Alberta Party Jason The Alberta Party believes that Cystic Fibrosis Of course the Alberta Party supports If the federal government wishes Avramenko continues to be a complex disease that is finding the best price for all to help Albertans, we are going to often neglected as we engage in necessary pharmaceuticals, which encourage them to do so. The predominately focusing on reacting to these certainly are. We envision a Alberta Party is always interested emergencies and illness, rather that creating a patient-centric system where front- in streamlining care, and avoiding proactive health and wellness model. Our line healthcare professionals are the over-complexity of our current platform, and Shadow Budget, promote engaged and empowered to health-care model. Front-line care strategies and best practices proven to keep enhance patient outcomes and is the most direct, personal, and people out of the hospitals, and robust access reduce costs, which would mean we fastest method of administering to to comprehensive community-based Primary would support any efforts to make struggling Albertans. We need to Care providing urgent care, family physician that a simpler and more cost- bolster home care and treatment services, and access to community social effective process. Hence, full access options ensuring transition and services. All of which clearly supports those to life-saving CF medications. rehabilitation is available to help struggling with Cystic Fibrosis. restore the strength and mobility of patients so they can confidently return home with the proper supports. This is how we would use this money effectively. Alberta Party Jim Black I support any treatment that will improve the quality of life for patients with this horrible disease. Green Party Allie Tulick Yes, I believe our province needs to take Yes, I support negotiating for a best I agree that life-saving medications action and grant easy access to rare diseases price for medication. Green Party for Cystic Fibrosis and other medication such as Orkambi. MP, , has been diseases need to be accessible and demanding the Federal Government affordable. Saving lives and saving to use its purchase power advantage tax dollar are the responsible rather than leave each province in MLA’s duty to the province and the balance. As your first Green Albertans. MLA, I support and will demand this cost saving and life-saving action on the behalf of Albertans living with rare diseases. Green Party Cass Romyn I have realized our health system needs Due to the current stronghold the Very much appreciate the improvements, and inequality within pharmaceutical industry has over Government of 's initiative treatment/ healthcare is completely our healthcare system, we will have to provide financial support, unacceptable. That is why, as a candidate for to negotiate the best price for however we also need funding into the , I advocate for Orkambi, if there isn't a generic, research and development of universal pharmacare, among other extremely similar but less expensive other treatments as well, if not a healthcare initiatives, to create a healthcare options available, to keep cure. Throwing a small amount of system that is actually universal - pharmacare costs as low as possible. money at the problem is more of a encompassing all healthcare needs. If band-aid solution - we need Orkambi is a life-saving drug for the majority solutions at the root of the issue. of CS patients, then it should be available to We need to support our education all, with minimal restrictions - least of all system, as well as the medical/ being cost. We also support the scientific community, to encourage implementation of a Guaranteed Annual those solutions to be developed as Income, which would treat poverty at a more quickly as possible systemic level, while reducing some additional strain from our healthcare system, and other public services. Green Party Heather I believe the provincial negotiations for Yes, in lieu of a national Yes when paired with a national Morigeau treatments such as Orkambi will continue to pharamacare plan there must be pharamacare plan for negotiating result in higher-than-necessary costs for the additional efforts to reduce the cost lower costs for all pharmaceuticals. medication. I believe the Government of of the medication for the province of Alberta should support a national pharmacare Alberta. I hope these responses give plan at the federal level. greater insight into both the provincial and national efforts of The has a federal the Green Party’s efforts to ensure platform to negotiate a national pharmacare drug treatments are cost effective plan, reducing costs for prescription and accessible for all citizens medication for the entire country, in place of across the nation. the patchwork negotiations of expecting each province to advocate for their individual needs. I fully support a national pharamacare plan and would advocate that Orkambi be one of the medications which are negotiated aggressively with Vertex Pharmaceuticals, for Canadians living with Cystic Fibrosis. Green Party Jenn Roach I do believe the Government of Alberta I believe pharmaceutical companies I do agree with the federal should take action to prevent people like are making more than enough government’s initiative to provide Laura Stevens from missing out on receiving money as it is, and would absolutely financial assistance for access to the care they need to live a happier, more negotiate for the best price in order drugs for Canadians with rare fulfilling life. I support publicly-funded to provide full access to the CF diseases. I would like to see the healthcare, and also would like to see medication(s) Albertans may need. Canadian government meet with pharmacare be included within our general all of the Provincial Governments healthcare system. This would ensure no in order to discuss working family is left with the burden and unnecessary together to purchase stress of having to afford expensive drugs pharmaceuticals in bulk as a during some of the hardest times of their country for all Canadians. This lives, both emotionally and financially, by would benefit Albertans by providing access to what they need, when decreasing the cost of higher they need it. quality medication, which if the public healthcare system is paying for, would mean other funds would be free to use in other areas. Green Party Carl Svoboda The Green Party of Alberta does support a national pharmacare program, in which governments negotiate with pharmaceutical suppliers to obtain better pricing, and we are willing to cooperate with the national government on a program to assist persons with rare diseases. Alberta Michelle As an Albertan Liberal, health care is of the upmost importance to invest in. We just released a strategy to have health care Liberal Party Robinson more sustainable. While it doesn’t directly speak to pharmaceutical, I believe we have a pharmacare strategy coming. More to your questions, as Alberta Liberals, we would advocate with companies and injunction with other levels of government as it’s a fundamental belief to access to health care, rare disease or not.