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The Pulmonary Hypertension Association of Canada Welcomes Federal Government Investment to Support Access to Rare Disease Drugs  
Vancouver, British Columbia (March 22, 2023) - The Pulmonary Hypertension Association of Canada (PHA Canada) is pleased to see the announcement of $1.5 billion over three years in support of a National Strategy for Drugs for Rare Diseases. Most of this funding, $1.4 billion, will go to the provinces through bilateral, individualized agreements. As a critical next step to advance the development of these bilateral agreements, the Government of Canada will engage with provinces and territories to jointly determine a small set of new and emerging drugs that would be cost-shared and covered in a consistent way across the country.
“This is a good start. PHA Canada has long advocated for PH patients to receive equitable and timely access to optimal treatment options to manage their disease,” said Nicole Dempsey, Chair of PHA Canada’s Board of Directors. “The disparities that exist in the access to treatments PH patients may receive, depending on what province or territory they live in or whether they have private insurance, can significantly impact their quality of life and health outcomes. If the optimal treatments for pulmonary hypertension are included in the list of drugs publicly covered across Canada, it will go a long way to improving the lives of many people living with PH.” 
The announcement included funding for research, improved data sharing for rare diseases, and establishing a stakeholder Implementation Advisory Group that will provide advice and continued engagement as the plan is unrolled. The Advisory Group, to be struck by Summer 2023, will comprise representatives of public and private drug plans, patients and clinicians, the pharmaceutical industry, and others. 
What this means for Canadians living with pulmonary hypertension needs to be clarified. PHA Canada is encouraged by the proposed approach includes a patient input mechanism. We will be working to identify opportunities to have the voices of the PH community included in the process.  

Health Canada press release:

Canadian Organization for Rare Disorders (CORD) press release:
About Pulmonary Hypertension
Pulmonary hypertension—or PH—is a rare and very complex lung disease, which is progressive and potentially fatal. PH is characterized by high blood pressure in the pulmonary arteries (blood vessels) that carry blood to the lungs. PH means that the blood pressure in the arteries that carry blood to the lungs is too high. This excessive pressure is usually caused by restriction or blockage in the blood vessels. PH can cause the heart to work harder and lead to heart failure.
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About the Pulmonary Hypertension Association of Canada (PHA Canada)
PHA Canada is a federally registered charity whose mission is to empower the Canadian pulmonary hypertension community through support, education, advocacy, awareness, and research. PHA Canada was established in 2008 by patients, caregivers, and healthcare professionals to work together to better the lives of Canadians affected by pulmonary hypertension and represent a united national PH community.
For more information about the Pulmonary Hypertension Association of Canada, please visit:
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For inquiries, please contact: 
Darren Fisher
Manager, Community & Stakeholder Engagement, PHA Canada
604-682-1036 x104 / 1-877-774-2226 x104