Advovacy
Updated: March 14, 2012
It ain’t over till we say it's over!
We are almost reluctant to remind you but the battle to have government reimbursement reinstated in Ontario continues into its fourth year. Additionally, thanks to an enterprising patient in Alberta who went to the media with her story, that battle has opened on a new front.
To bring you up-to-date, four years ago this coming spring the Ontario government stopped approving funding for new patients who were prescribed Prolastin (the only brand of augmentation therapy approved for use in Canada). They continue to renew funding for those previously approved but refuse to process new applications.
In addition to a number of scientific submissions from the Grifols (formerly Talecris Biotherapeutics) the manufacturer of Prolastin, Alpha-1 Canada also made a scientific submission in January 2011, which was written by Dr. Kenneth Chapman. On November 11th 2011, Remembrance Day, we made yet another submission grounded in patient outcomes. This second submission by us was based on the personal stories of dozens of Canadians from coast to coast to coast that have been fortunate enough to receive Prolastin. Without the direct participation of these members of our community this submission would not have been possible. The document takes its name from a quote from a patient in British Columbia who wrote that she, and her sister, were “Living Proof” that Prolastin therapy is effective in preserving lung function and extending life.
Living Proof has been in the hands of the Ontario government since November and is being reviewed by them, we expect a response shortly.
Even as the ink on Living Proof was still drying, the same issue flared up in Alberta. Living Proof was quickly rewritten for the Alberta situation and submitted to the Alberta government on December 15th, 2011.
You can read both of these versions of Living Proof here:
Living Proof – Ontario – November 2011
Living Proof – Alberta – December 2011
Alpha-1 Canada will continue to advocate for equitable and affordable access for people affected by alpha-1 antitrypsin deficiency to all forms of treatment that may be prescribed or encouraged by their qualified medical practitioners in Ontario, Alberta and everywhere else in Canada. We should point out that the governments of British Columbia, Manitoba and Québec do pay for this treatment.
Unfortunately, the way these process work in the provinces and territories a patient group like Alpha-1 Canada cannot begin the approval process. We will however, work to convince those who can begin those processes to do so and we will take an active role in ensuring those approvals.
Baseball great Yogi Berra, is famous for many sayings including, “It ain’t over, ‘til it’s over.” In the fight for equitable and affordable access to treatment you can rest assured that these battles ain’t over till we say they’re over!
Join with the Canadian Rare Disease Community to Advance our Shared Goals
It has been nearly 30 years since the USA passed the first Orphan Drug Act and more than a dozen years since the European Union passed their orphan drug legislation. Although Canadians with rare disorders are feeling optimistic about Canada’s engagement, your patient voice is now more important than ever to ensure that the needs of people with rare diseases are met.
We need your help in raising awareness and building momentum for the support needed to advance the policies and programs which affect those with rare disorders. One way to do so is by writing to the Prime Minister and Health Minister Aglukkaq as well as your local MP. A sample letters can be found below. If you are unsure of who your member of parliament is or where to write to, you can find him or her using your postal code at the following web site:
http://www.parl.gc.ca/Parlinfo/Compilations/HouseOfCommons/MemberByPostalCode.aspx?Menu=HOC
Sample Letter to your MP, the Prime Minister and Health Minister Aglukkaq