New Dad Seeks Approval For Life Changing Treatment
Rare Disease Day is an important day to me and many others around the world who are working towards social equity, healthcare, and access to diagnoses and therapies for people living with a rare disease.
That last point in the line above, “access to diagnoses and therapies for people living with a rare disease” is one that I want to draw attention to today (again) – and it may come across a little blunt. I was diagnosed with Spinal Muscular Atrophy III, a form of muscular dystrophy, when I was 13 years old. To make an otherwise long story short, in those 20+ years since then, the disease has progressed to the point where I am now unable to walk, have a hard time standing, lifting objects over a few pounds….the list goes on. Basically, with each day that goes by, I am losing more and more independence.
There are currently two health treatments that Canada approved for citizens living with #SMA, however, due to restrictions in some provinces around age and ambulatory status, I, along with other adults in Ontario, am unable to access either of these treatments. Anyone living with SMA in Quebec can access treatment and other provinces have plans in place that allow adults to apply for and access treatments. Federal government employees with SMA have had coverage for treatment since 2017 as part of their health care plan. Around the world many countries are making sure their citizens have access to these life altering treatments, for example the UK has recently opened up access to treatment for everyone with SMA, of any age or ambulatory status. As a new dad, the thought of not being able to hold my son for much longer and being severely limited in what I can do with him not only scares the shit out of me but also angers me. It angers me that our provincial government is unwilling to follow the lead set by other provinces such as Quebec, and open up access to treatment for EVERYONE, regardless of age or ambulatory status. It angers me that my application for treatment has sat on the desk of Christine Elliot since AUGUST 26, 2019, yes, 2019. 917 days. 2 years, 6 months and 2 days to date. The fact that for over 2.5 years I could have been receiving life-changing treatment is disheartening, frustrating, anxiety-inducing, stressful, and just pathetic. I try not to look back on “What If’s”, but sometimes it is hard not to. I am not here looking for sympathy. I am here looking once again to make a change, and draw attention to this issue in hopes that myself, as well as other adults living with SMA can get the treatment they need and deserve. These are people’s lives that hang in the balance.
I am fortunate enough to be a featured story in the March 2022 issue of MacLean’s Magazine, which is out on newsstands now. That article is attached here for further reading. Please feel free to share this as much as possible. I personally feel that 2022 is a “make or break” year for me when it comes to accessing treatment in Ontario. I am trying to stay optimistic that this is the year where adults, regardless of age or ambulatory status, will have access to these life saving and life changing drugs.