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 treatment
In October 2018, Health Canada approved Tegsedi (inotersen), the first medication to treat polyneuropathy in hATTR patients. This was a very exciting day for our community, but now our work begins to ensure that this treatment is not only available, but accessible to all patients who can benefit from it – no matter where they live in Canada, or whether they depend on private or public drug coverage.
There will be many opportunities to have your voices heard regarding the importance of access to treatment for hATTR. Right now, the CADTH Common Drug Review is conducting its assessment of Tegsedi to determine if it should be publicly funded, and is accepting patient and caregiver input through submissions from established patient groups to inform its process. HAC has developed an online survey to gather (anonymous) input from hATTR patients and their caregivers – and you don’t need to have experience with Tegsedi to participate.
Just click here to complete the Tegsedi questionnaire and take your first step towards becoming an advocate. Don’t delay! This survey closes on March 1, 2019.
Help give a voice to hATTR amyloidosis today!
If you have any questions, would like to get involved, or want to learn more about advocacy, please contact us at firstname.lastname@example.org
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