My family knows Multiple Sclerosis (MS) intimately. My only cousin, a former model, was larger than life; when we were growing up, she was simply the coolest, and everything I wanted to be–beautiful, vibrant, and the life of the party. To my mother, she was ‘Cinderella’–and to my brother and I, and to our friends, she was simply ‘Cuz’.
Five years ago, however, Cuz’s life and our lives changed over night with her devastating diagnosis of MS. Today, she is immobile, and a headrest is needed just to keep her head upright, as the muscles in her neck are long-gone. My cousin is one of the bravest people I know, as she has the courage to wake each day to look after her 18-year-old daughter; caregivers bathe her, and my aunt feeds her, but is always struck by her indomitable spirit, passion for Smokey Robinson and her sense of humour, even on the really hard days–the days with excruciating pain that painkillers can’t kill.
I came to Parliament Hill in order to fight for neurological disease. I was aware there was tremendous need for education and awareness, treatment, caregiver support, and research–I was also aware there were treatments available overseas that were not available to Canadians. I therefore garnered all-party support for a House of Commons Sub-Committee on Neurological Disease.
On May 6th, Liberal Health Critic, Dr. Carolyn Bennett and myself, wrote an open letter to Federal Health Minister, Leona Aglukkaq regarding chronic cerebro-spinal venous insufficiency (CCSVI), but we have yet to receive a response.
I have written two questions for the Order Paper on MS and CCSVI.
The Sub-Committee on Neurological Disease had four hearings on CCSVI, including one day of testimony from Dr. Zamboni (Italy), who pioneered the ‘liberation’ procedure to treat CCSVI.
A take-note debate on this was finally granted by the government, and took place on Monday, June 14th.
Members agreed during the take note debate that the Federal Government must show leadership regarding diagnosis and treatment of CCSVI, that it must work with the provinces and territories, and that ‘we have to move this along as quickly as possible’. The clock is ticking, MS patients simply do not have the time to wait.
I will continue to advocate on behalf of all Canadians living with Multiple Sclerosis, who not only have the courage to battle their disease every day but also have the guts and the tenacity to take on a new fight, the fight for CCSVI.
Kirsty
—
Dr. Kirsty Duncan, MP
Opposition Critic for Public Health
