One year ago, we launched Hereditary Amyloidosis Canada (HAC) because we saw a need for a dedicated community, support group and information and resources for people living with hATTR amyloidosis. Since then, much has changed in the way hATTR amyloidosis is managed in Canada with the approval of the first two treatments for our disease.
As you may already know, the Canadian Agency for Drugs and Technologies in Health (CADTH) and the Institut national d’excellence en santé et services sociaux (INESSS) in Quebec recently recommended that Tegsedi™ (inotersen) and Onpattro™ (patisiran) be reimbursed by public drug plans for Canadians living with hATTR amyloidosis. We’re so pleased that the voices of hATTR amyloidosis patients, families and their caregivers were heard – but there is still more work to be done.
Despite being approved by Health Canada and receiving positive funding recommendations, these treatments are not yet accessible through publicly funded drug plans for patients who could benefit from them. HAC believes it’s imperative for those who have been diagnosed with hATTR amyloidosis to have immediate access to all approved therapies to allow for the best possible outcomes. For this reason, we’ve launched the #stophATTRnow campaign to urge provincial and territorial governments to make these treatments accessible through public funding without further delay.
To find out how you can get involved and lend your voice to #stophATTRnow, please visit https://madhattr.ca/advocacy/ today, or contact us at info@madhattr.ca.