Hereditary Amyloidosis Canada (HAC) is dedicated to connecting all patients and families affected by hATTR amyloidosis to the community and the resources they need. One of the ways we do this is through our advocacy efforts. We want to help empower and provide support to patients, caregivers, family and friends, as well as members of the hATTR medical community to advocate to federal, provincial and territorial governments on issues that are important to our community. Your engagement in advocacy can help ensure that the hATTR community’s voice is heard and needs are met by government decision-makers.
Current advocacy issue: Access to approved therapies
For the first time, new therapies have been developed that treat the underlying cause of hATTR amyloidosis. Despite being approved by Health Canada, two new treatments – Tegsedi (inotersen) and Onpattro (patisiran) – are not yet accessible through publicly funded drug plans for patients who could benefit. Given the significant unmet medical need, and the fact that not every treatment is appropriate for every patient, HAC feels that it is important for those who have been diagnosed with hATTR amyloidosis to have access to all Health Canada-approved therapies to slow the progression of this debilitating and life-threatening disease. We urge provincial and territorial governments to ensure that these treatments are accessible through public funding without further delay, to allow for the best possible outcomes for all patients living with hATTR amyloidosis.
Help give a voice to hATTR amyloidosis today!
If you would like to learn more about advocacy, or how you can get involved in HAC’s advocacy efforts, please contact us at firstname.lastname@example.org.
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