Knowing the issues that matter to the ALS Community: ALS Election Commitments

The 2021 federal election is wrapping up in less than a week! With Election Day scheduled for Monday, September 20, 2021, now more than ever, it’s important to know the issues that matter to you before you cast your vote.

ALS Canada reached out to each major political party to get more details about how they, if elected, would support the Canadian ALS community. We asked them about how they would accelerate access to newly approved ALS therapies, invest in much-needed ALS research and brand Canada as a viable environment for innovative treatments, and engage in meaningful patient involvement at critical decision-making tables.

As you go to the polls on September 20, we hope this blog post provides you with more information on how different parties’ policies will affect people and families living with ALS. Read each of the party’s responses and platforms below to learn more.

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

Note: Additional responses sent to ALS Canada before Election Day will be posted as they are received. ALS Canada gave each party approx. three weeks – until September 10, 2021 – to respond to our request. Responses received after this date were not included in this blog’s original publication.

QUESTIONS:

QUESTION ONE:

The existing pathway for drug access is too long for a person living with ALS and other terminal illnesses. In consultation with the broader Canadian ALS community, ALS Canada released a Position Paper in June that offers two solutions to getting Health Canada-approved therapies to Canadians living with ALS in a timeframe that more accurately reflects the urgent needs of this community.

Will you and your party support the following two priorities, and if so, please explain how:

1. Working with the Provinces and Territories to implement an interim funding mechanism to immediately publicly reimburse Health Canada-approved ALS treatments.
2. Condensing the entire drug access pathway – including parts under federal jurisdiction – so that the total approval and reimbursement processes associated with ALS therapies take no longer than 18 months.

QUESTION TWO:

Foundational investments in ALS research are critical to developing more effective ALS treatments and making Canada a leader in the health research and life sciences sectors. Our 2022 Pre-Budget Submission asked the government to invest $35 million over five years to expand CAPTURE ALS from a pilot initiative to a world-leading, self-sustainable Open Science platform. CAPTURE ALS is a comprehensive research platform that will enable Canadian researchers to study why people experience ALS symptoms and progression differently. We believe the federal government has a role in supporting this essential initiative. At the same time, Canada’s pharmaceutical regulations are vital to transforming Canada into a viable market that will facilitate quick access to the newest and most innovative treatments. The government must create an environment where Canada is seen as a viable market to run clinical trials, pursue regulatory approval, and launch new and innovative ALS treatments early.

What will your party do to invest in dedicated ALS research funding and strengthen Canada’s position as a viable market for new therapies and R&D that will facilitate Canadians’ early access to new therapies, especially given the limited options available to Canadians living with ALS?

QUESTION THREE:

People, patients, and their families are the central focus of health care – they are the ultimate benefactors and are directly affected when health system changes take place. This is especially the case when it comes to changes that will affect Canadians living with ALS and other terminal rare diseases. Given the vital importance of patient input in respect to the ongoing creation of a national strategy for rare diseases and the Canadian Drug Agency, people living with ALS and other rare diseases must have their perspectives listened to and acted upon.

When considering new policy changes regarding Canadians living with rare diseases, how will your party commit to meaningful patient engagement with the ALS community at decision-making tables?

Party Responses:

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

Bloc Québécois

No response received yet.

Read the Bloc Québécois’s full platform (French only).

Conservative Party of Canada

Six years before becoming the Leader of Canada’s Conservatives, Erin O’Toole participated in the Ice Bucket Challenge and added his voice to those raising awareness about ALS. He joined the Internet phenomenon in memory of Gerry Johnston, a business leader and former police officer from Durham, Ontario.

Many Canadians, including Mr. O’Toole, know someone who has been affected by this devastating terminal disease. That is why Canada’s Conservatives stand with the ALS Society in your efforts to raise awareness and promote advocacy so that scientists can continue to research and help those who are suffering.

We know that it is only through awareness, advocacy, and understanding that the ALS community can promote research and help Canadians with the services they need. Continued research into slowing and stopping ALS is critical. We will also ensure that Health Canada includes the voices of patients and their families in its efforts to bring an end to the devastating effects of ALS.

Within Canada’s Recovery Plan, we have a detailed plan to secure the future of Canada’s universal healthcare system. We have attached the chapter of our plan addressing this important priority.

A Detailed Plan to Secure Healthcare
The COVID-19 pandemic has exposed the cracks in our healthcare system and reminded us all of the need to strengthen it. Canada’s Conservatives believe that the federal government should pay its fair share. Under the last Conservative government, federal transfers to the provinces grew at six per cent per year. Unfortunately, in 2017, the Trudeau government cut this in half, putting lives at risk.

Canada’s Conservatives will take immediate action to restore health funding and to tackle the urgent crises of mental health and addiction.

Secure, Predictable Funding
Canada’s Conservatives will meet with the Premiers within the first 100 days of forming government to propose a new health agreement with the provinces and territories that boosts the annual growth rate of the Canada Health Transfer to at least six per cent. This will inject nearly $60 billion into our healthcare system over the next 10 years.

Treating Mental Health as Health – the Canada Mental Health Action Plan
Mental health and addiction were serious problems long before COVID hit. After a year of lockdowns made them worse, these are crises that our government needs to address. Canadians are suffering and dying. It’s time for real action – and a new approach.

Canada’s Conservatives will introduce the Canada Mental Health Action Plan that will:

• Propose to the provinces that they partner with us by dedicating a significant portion of the stable, predictable health funding to mental health to ensure that an additional million Canadians can receive mental health treatment every year;
• Encourage employers to add mental health coverage to their employee benefit plans by offering a tax credit for 25% of the cost of additional mental health coverage for the first three years;
• Create a pilot program to provide $150 million over three years in grants to non-profits and charities delivering mental health and wellness programming; and
• Create a nationwide three-digit suicide prevention hotline.

Supporting Canadians Suffering from Addiction
Canada’s Conservatives will treat the opioid epidemic as the health issue that it is. We believe that law enforcement should focus on dealers and traffickers. The last thing that those suffering from addiction should have to worry about is being arrested. Any interaction the government has with them should focus on keeping them safe and helping them recover.

To help more Canadians recover from addiction, Canada’s Conservatives will revise the federal government’s substance abuse policy framework to make recovery its overarching goal. We will reorient the Canadian Drugs and Substances Strategy towards ensuring that everyone suffering from addiction has the opportunity to recover and to lead a drug-free life and that all policies that fall under the Strategy have the reduction of harm and promotion of recovery as their objectives. To realize this goal, we will:

• Invest $325 million over the next three years to create 1,000 residential drug treatment beds and build 50 recovery community centres across the country.
  • This will give spaces to those who suffer from addiction, their families, and those who have recovered where they can get the help they need and support each other.
• Support innovative approaches to address the crises of mental health challenges and addiction, such as land-based treatment programs developed and managed by Indigenous communities as part of a plan to enhance the delivery of culturally appropriate addictions treatment and prevention services in First Nations communities with high needs.
• Partner with the provinces to ensure that Naloxone kits are available for free across Canada.

Supporting Canadians Who Are Suffering
Canada’s Conservatives believe that the Government of Canada should have appealed the Quebec Superior Court decision on Medical Assistance in Dying. Instead, the Trudeau government passed a vague law with no safeguards that devalues human life.

When it comes to Medical Assistance in Dying (MAID), Conservatives will:

• Reinstate the ten-day waiting period to make sure somebody does not make this decision at their lowest point.
• Restore the requirement for two fully independent witnesses to ensure that a vulnerable person is not being forced or coerced.
• Require that any discussion of MAID only occur if raised by the patient and prevent healthcare workers from suggesting it to someone who is not seeking it. Canadians living with disabilities report regularly being in situations where MAID is suggested to or pushed on them and report how this undermines their sense of security in healthcare environments.
• Repealing the Bill C-7 provision allowing MAID for those with mental health challenges.
• Require any patient receiving MAID to be informed/reminded immediately before receiving it and given the opportunity to withdraw consent.
• Protect the right of patients to choose to receive care in a MAID-free environment.
• Require healthcare practitioners approving MAID requests (MAID accessors) to examine and consult directly with the patient before approving the request (with allowances made for virtually-enabled examination where required).
• Require MAID assessors to complete MAID assessor training to ensure full awareness of and compliance with laws and best practices around MAID.

A Conservative government will also invest in palliative care. To help Canada become a place where all Canadians who suffer are offered relief, we will double the direct federal investments in palliative care. The Canadian Hospice and Palliative Care Association has estimated that under 30 percent of Canadians who need it have access to palliative care services.

Read a PDF version of the Conservative Party’s response.

Read the Conservative Party of Canada’s full platform.

Green Party of Canada

No response received yet.

Read the Green Party of Canada’s full platform.

Liberal Party of Canada

No response received yet.

Read the Liberal Party of Canada’s full platform.

New Democratic Party of Canada

New Democrats believe that Canada must seize this moment to work towards a cure for ALS, and we must ensure that all Canadians impacted by this devastating disease have access to high-quality treatment and compassionate care.

That’s why a New Democratic government will work in partnership with the provinces and territories to establish universal public pharmacare as rapidly as possible – with a target launch date of 2022. We will create an arms-length agency that will be responsible for establishing and overseeing the list of medications and devices covered by pharmacare. The agency will be governed collaboratively by the federal, provincial, and territorial governments and include strong patient representation.

We are very mindful of the need to ensure that Canadians with rare diseases and disorders are well-served and that promising drug therapies are appropriately accessible. We believe that special care must be taken to ensure that formulary listing decisions are responsive to these requirements and future pharmaceutical innovation. Our goal is to construct a broad, comprehensive formulary that all provinces and territories will agree to cover with no direct cost to patients in exchange for dedicated federal transfer payments.

Furthermore, New Democrats believe the federal government has a responsibility to fund research that will accelerate progress towards the development of effective treatments for ALS. The low prevalence of ALS makes competition for CIHR grants more difficult, and funding research less attractive to industry partners. Additionally, without a survivor population, grassroots funding is limited – all resulting in a need for targeted public support. We agree that CAPTURE ALS represents an important investment in ALS research that has the potential to make meaningful and impactful discoveries about the disease.

Read a PDF version of the NDP’s response.

Read the New Democratic Party of Canada’s full platform.