{"id":43655,"date":"2024-11-07T11:26:10","date_gmt":"2024-11-07T16:26:10","guid":{"rendered":"https:\/\/www.parkinson.ca\/?p=43655"},"modified":"2024-11-07T11:27:45","modified_gmt":"2024-11-07T16:27:45","slug":"advocacy-in-ottawa-shining-a-light-on-the-parkinsons-community","status":"publish","type":"post","link":"https:\/\/archiveparkinson.thedev.ca\/fr\/advocacy-in-ottawa-shining-a-light-on-the-parkinsons-community\/","title":{"rendered":"Advocacy in Ottawa: Shining a light on the Parkinson\u2019s community"},"content":{"rendered":"

On October 29, 2024, Parkinson Canada headed to Ottawa alongside people living with Parkinson\u2019s for a full day of discussion with federal leaders.\u00a0<\/span>\u00a0<\/span><\/p>\n

Parkinson\u2019s is a growing issue in Canada and places substantial burdens on people, families and our healthcare systems. Action is needed to address the complex challenges those impacted by Parkinson\u2019s face\u2013 but we cannot do it alone.\u202f By meeting directly with federal policymakers, our community\u2019s stories resonate in a profound and impactful manner that brings awareness to Parkinson\u2019s.<\/span>\u00a0<\/span><\/p>\n

Our day was full of meaningful conversations with government representatives, many of whom have been directly affected by Parkinson\u2019s. We discussed how we can partner together to respond to challenges with Parkinson\u2019s and ensure our community can live well.<\/span>\u00a0<\/span><\/p>\n

This day comes on the heels of the release of our Economic Burden of Parkinson\u2019s in Canada report which outlined the financial realities facing people with Parkinson\u2019s, their care partners and the healthcare system today as well as over the next decade. We\u2019ve encouraged our community to take action by asking their government representatives for better support for people affected by Parkinson\u2019s. Read the full report and send a letter to your government representative at <\/span>www.parkinsonspricetag.ca<\/span><\/a>\u00a0<\/span>\u00a0<\/span><\/p>\n

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The Highlights<\/span><\/b>\u00a0<\/span><\/h3>\n

This year, in addition to meeting directly with parliamentarians, Parkinson Canada hosted a roundtable discussion focused on the need for improving Parkinson\u2019s research and care in Canada. The roundtable brought together people from across the Parkinson\u2019s ecosystem including people living with Parkinson\u2019s, care partners, parliamentarians, researchers and clinicians, and representatives from Parkinson\u2019s organizations across Canada. The result was a robust discussion that brought perspectives and insights from all areas of our country on how, by working together, we can improve care and outcomes for people living with Parkinson\u2019s in Canada, including the need for more interdisciplinary collaboration, prioritizing research funding, and ensuring stability and financial security for those affected by Parkinson\u2019s.\u00a0<\/span>\u00a0<\/span><\/p>\n

We are grateful to our roundtable sponsors, MP Lloyd Longfield and Senator Stephen Greene for their steadfast support and advocacy on Parkinson\u2019s. We are likewise grateful to Minister of Health, Mark Holland, MP Dr. Steven Ellis, and MP Peter Julian for joining us at the event and speaking to our participants.<\/span>\u00a0<\/span><\/p>\n

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Statement in the House<\/span><\/b>\u00a0<\/span><\/h3>\n

On October 28, MP Lloyd Longfield of Guelph, Ontario, delivered a statement in the House of Commons. His message spoke to the importance of research and encouraged his fellow Members of Parliament to join Parkinson Canada\u2019s work to find solutions for those living with Parkinson\u2019s. You can watch the clip below:\u00a0<\/span>\u00a0<\/span><\/p>\n

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We made 5 key asks to our national leaders:<\/span><\/b>\u00a0<\/span><\/h3>\n
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  1. Make Canada a world leader in access to medicines. <\/span><\/b>The federal government must ensure Canadians have access to the best Parkinson\u2019s medicines available. Any pharmacare plan that is further developed by the federal government should prioritize patient needs and preferences, ensuring comprehensive medication access, quick approval for new drugs, and enhancing the sustainability of Canadian healthcare.<\/span>\u202f\u202f<\/span><\/i>\u202f<\/span>\u00a0<\/span><\/li>\n
  2. Fair Financial Assistance and Access to Disability Supports. <\/span><\/b>Canadians impacted by Parkinson\u2019s should have access to the full suite of financial supports available to them \u2013 but this is not the current reality. The federal government must address known eligibility and accessibility barriers to the Disability Tax Credit, and, given its known shortcomings, the government should ensure it is not the only route to receiving the new Canada Disability Benefit.\u202f\u202f<\/span>\u00a0<\/span><\/li>\n
  3. Access to health professionals<\/span><\/b>. The federal government must work with the provinces and territories to ensure there are adequate numbers of specialists being trained and entering practice in Canada. This includes removing barriers to the credentialing of internationally trained healthcare professionals.<\/span>\u202f<\/span><\/i>\u202f<\/span>\u00a0<\/span><\/li>\n
  4. Support for care partners<\/span><\/b>. Care partners play a critical role in supporting the Parkinson\u2019s community and the national economy but the mental, physical, and financial strain of providing this support amounts to more than a full-time job. As the Federal Government develops the National Caregiver Strategy, they must listen to the needs and gaps faced by care partners and provide adequate supports.\u202f\u202f<\/span>\u00a0<\/span><\/li>\n
  5. Improved data collection<\/span><\/b>. The first step in finding a cure for Parkinson\u2019s is getting better data on Parkinson\u2019s in Canada. Decision-makers should ensure robust demographic data on the state of Parkinson\u2019s is collected and updated regularly by each Province. By working with the provinces on better health data, the Federal Government can help Parkinson\u2019s research efforts immensely.\u202f\u202f\u202f<\/span>\u00a0<\/span><\/li>\n<\/ol>\n

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    Meetings<\/span><\/b>\u00a0<\/span><\/h3>\n

    Parkinson Canada met with several Members of Parliament and government officials. In these meetings, our community members focused on highlighting the need for fair financial support, affordable and accessible medications, and emphasized the concern of the Parkinson\u2019s community around the lack of Movement Disorder Specialists.\u00a0<\/span>\u00a0<\/span><\/p>\n

    Members of Parliament<\/span>\u00a0<\/span><\/p>\n