With the 2019 federal election campaign underway, are you curious about what the parties are saying about the issues that could affect Canada’s ALS community?

ALS Canada asked each of the major parties what they would do, if elected, to help people and families affected by ALS.

Specifically, we asked them about how they would improve equitable, timely and affordable access to proven ALS therapies and patient engagement, provide dedicated ALS research funding, and implement a palliative care strategy.

As you go to the polls on October 21, we hope this blog post helps inform you about the issues affecting people and families living with ALS. Read each of the party’s responses below to learn more.

ALS Canada would like to thank the parties for their participation and responses.

*NOTE: All responses are directly from the parties. ALS Canada did not edit or change the responses in any way.

Question #1

The existing pathway for drug access is too long for a person living with a terminal illness. As recently experienced with one new ALS therapy, it has been a year since Health Canada priority-review approval and there is still no timeline in sight for public reimbursement and pricing decisions. With more than 60 prospective ALS therapies in development right now, what will your party do to improve equitable, timely and affordable access to proven ALS therapies and how will you ensure that the perspectives of people with lived experience are meaningfully considered throughout the process?

 

Conservative Party of Canada

No response was received.

Green Party of Canada

The Green Party will expand the single-payer Medicare model to include Pharmacare for all Canadians. We will also create a bulk drug purchasing agency, and reduce drug patent protection periods.

Liberal Party of Canada

Liberals believe that all Canadians – but especially those living with ALS – deserve consistent, timely access to the treatments they rely on. That’s why our government has taken several steps over the past four years to streamline this process. We are reviewing drugs and medical devices more quickly and finding ways to support innovative treatments coming to Canada.

Health Canada has accelerated the review of many new medicines, and we continue to expedite reviews so that Canadians get quicker access. We’ve also taken steps to reduce the time between our approval and the recommendation for reimbursement, which means that new drugs will be covered by drug plans sooner. Finally, we are modernizing the Special Access Programme to better meet the needs of patients and physicians. Most recently, Health Canada approved Edaravone (Radicava) in Canada for the treatment of patients with ALS in October 2018.

As well, we are in the process of establishing the new Canada Drug Agency which will help to further streamline the process through which new treatments are approved in Canada. A re-elected Liberal government will also move forward, working with provinces, territories and stakeholders, with the creation of a national formulary and the implementation of a $500 million per year rare disease strategy so that Canadians can have better access to high-cost treatments.

New Democratic Party of Canada

Decades of Conservative and Liberal cuts and inaction have left too many Canadians digging deep into their pockets to pay for prescription medication. Many people cannot take the medication they are prescribed because it’s too expensive or because the medication is not readily available.

Instead of making things better, Andrew Scheer and the Conservatives have closed the door on implementing universal pharmacare and negotiating fair prices and timely
access to new therapies with drug companies.

The Trudeau Liberals claim that pharmacare is on its way but they have made no realistic investments that would help implement pharmacare soon rather than decades
from now.

This hurts Canadians, especially those who need expensive, life-saving medication. It’s time for Canadians to have a federal government that’s in it for them.

Jagmeet Singh and the NDP have a bold vision to provide Canadians with head-to-toe health coverage. Affordable health care is our top priority – this is why we’re making a historic investment in universal pharmacare.

Our pharmacare plan ensures that all Canadians will have access to prescribed medication, at no cost.

An NDP government will invest $10 billion in our pharmacare plan. Investing in people and expanding access to medication will improve Canada’s position as a priority country for new drug launches and health research.

We will work with drug companies, experts, provinces and territories, and patients with lived experiences to develop a national formulary and ensure that patients and their
families have timely access to new drug therapies covered by our plan.

Question #2

There has been more progress in ALS research in the past five years than in the previous 100 – momentum that needs to be built upon in order to develop effective treatments. Right now, the ALS Canada Research Program is the only program in Canada that provides dedicated funding for ALS research, and it is funded entirely by donors. We believe government has a role to play in providing dedicated ALS research funding. What will your party do to invest in dedicated funding for ALS research?

 

Conservative Party of Canada

No response was received.

Green Party of Canada

The federal government can and should lead the way in demonstrating a better model of health care. It is important that health care challenges are addressed at a federal level and that vulnerable populations receive equal access to care.

Scientific research is the foundation of innovation. The Green Party will invest in scientific research and implement the full funding recommendations from Canada’s Fundamental Science Review. We are happy to work with members of the ALS Society of Canada to determine research priorities at the federal level.

Liberal Party of Canada

Liberals know that health research is one of the most important investments we can make as a nation – transforming lives at home and abroad. Unlike the last government – who cut funding and muzzled scientists – we strongly support our health researchers, investing over $1.1 billion annually in the Canadian Institutes of Health Research, with an additional $350 million in 2018. This includes significant investments in ALS research, with close to $20 million in ALS research over the past five years.

This supports research from institutions across Canada through investigator-initiated research programs and is focused on understanding the underlying mechanisms of ALS and trying to find treatments. For example, we’re supporting the work of Dr. Janice Robertson from the University of Toronto, who is investigating the potential cause of ALS. CIHR has a long history of partnering with the ALS Society of Canada to advance ALS research and supporting the Canada Brain Research Fund. Finally, we were thrilled to appoint world leading ALS researcher Dr. Michael Strong as the new President of the Canadian Institutes of Health Research in 2018. Dr. Strong actually developed the international criteria for diagnosing ALS, the aptly named “Strong Criteria.”

A re-elected Liberal government will continue to make major investments in health research – including ALS research – to ensure our researchers keep making life changing breakthroughs that make a meaningful difference in the lives of Canadians with ALS.

New Democratic Party of Canada

In 2017, the NDP supported ALS Society of Canada’s pre-budget request for $25 million over five years in research to help build upon the momentum of the ice-bucket challenge at the time. The Trudeau Liberals rejected the request – the Liberals have made its priorities quite clear.

An NDP government will ensure that Canada is a leader in innovative health research. We will work with universities and health professionals to make sure that public
research on critical health issues continues to flourish. This is especially needed for rare diseases like ALS.

Question #3

Whereas challenges and gaps in Canada’s palliative care system are increasing, how will your party implement the Framework on Palliative Care in Canada and improve the access and quality of palliative care for Canadians, including for people living with ALS.

 

Conservative Party of Canada

No response was received.

Green Party of Canada

The Green Party is committed to implementing the Framework on Palliative Care in Canada . We support innovative home-sharing plans and other measures to allow people to stay in their own homes as long as possible. We will work to create more long-term care beds in neighbourhood facilities. We will also consult with caregivers and employers to create a work environment where caregivers are not penalised for taking care of a loved one, exploring options to increase flexibility, EI and tax credits, and
work sharing.

Liberal Party of Canada

Liberals believe that Canadians approaching the end of their lives should live out their days in comfort and dignity, in the setting of their choice. We know that palliative care is both one of the most essential and most difficult parts of our health care system – it’s literally a matter of life and death.

We were proud to unveil Canada’s first-ever Palliative Care Framework, but we know that it alone is not enough – so we’re putting our money where our mouth is. This starts with the largest investment in Canadian history in home and community care – which includes palliative care – an unprecedented six billion dollars. We’re also supporting targeted initiatives that – bit-by-bit – help more Canadians get access to palliative care. These range from $1.9 million for the Canadian Hospice Palliative Care Association to improve advance care planning to two million for the Canadian Virtual Hospice to expand virtual services and resources to $600,000 for the Canadian Home Care Association to improve delivery of care at home.

We also know that in order to make palliative care more accessible it needs to be well integrated all throughout the health care system. That is why we have provided more than $6 million to Pallium Canada in order to expand palliative care training across the country so that health professionals are fully able to support Canadians and their families in their end of life needs.

These investments will help bring the comfort of palliative care to more Canadians. But we’re just getting started. A re-elected Liberal government will continue to expand access to to palliative care nationwide, supported by an additional six billion dollar towards our health care system.

New Democratic Party of Canada

New Democrats have made health care our priority, which is why we are advocating for head-to-toe health coverage, including palliative care.

We successfully put forward the motion in 2013 that helped establish the Framework on Palliative Care in Canada.

Now, our historical investment in pharmacare means that people can afford expensive medication they need if they choose to receive palliative care outside hospital settings.
This is important because drug therapy helps control symptoms at the end of life.

We will improve access and quality of palliative care as part of our National Seniors Strategy so that we have a stronger, cohesive approach to planning care for our aging
population.

We will ensure that caregivers are supported as part of this strategy. In order to help make life a little more affordable for caregivers, who are overwhelmingly women, we’ll
make the Canada Caregiver Tax Credit refundable. This will provide thousands of dollars to the most low-income caregivers, many of whom have given up work
completely to care for a loved one.

New Democrats believe Canadians and their families have the right to make the choice for the kind of care they would like to receive that is dignified and compassionate.

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