About the Campaign – Access To Approved Therapies
Hereditary ATTR (hATTR) amyloidosis is a rare, genetic disease which can lead to significant disability and death. Early and accurate diagnosis is important due to the rapid, natural progression of hATTR amyloidosis, however, patients can experience a delay in diagnosis of up to 8 years given the complexity of the disease.
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, the hATTR community 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 need to work together to 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.
We want to hear from you!!
We hope you will join our advocacy efforts by using the tools on this website. Please reach out to Hereditary Amyloidosis Canada (HAC) with any questions about our work, to share your hATTR amyloidosis stories, or to tell us how we can make this site even better.