There are three drugs – Rilutek, Albrioza and Radicava – currently available and approved by Health Canada to treat ALS and provide hope to ALS patients. These drugs help slow progression – by months, not years. They are NOT a cure.
I take the Rilutek and Albrioza twice daily, on an empty stomach, 1 hour before meals. Radicava is on a two-week cycle. This is taken in the mornings one hour prior to the other medication. Needless to say, my medication schedule definitely influences my daily schedule.
Why do I bring this up? I received a call on Monday, November 6, 2023 from a support program that helps provide financial support to cover the costs of Rilutek. They were calling to inform me that their program support coverage ended as of September 30, 2023. I don’t get why they were calling me after support had ended.
These Drugs Cost How Much???
These three drugs are not cheap. Rilutek costs about $2,000/month, Albrioza $18,000+/month and Radicava $10,000/month. This adds up to $30,000/month or $360,000/year. Yes, you read that right.
I am extremely lucky as all my medication costs are covered between both my work benefits and my wife’s work benefits. So, the ending of this program support does not impact me directly… at least not yet.
The Province of Ontario does provide coverage for these drugs through their Exceptional Access Program, so long as the patient meets all the qualifications. This is also why I love our health care system. It may not be perfect, but I shudder to think of the alternative.
For any patients that depend on this coverage, please talk to your health care team to complete the necessary applications, if you have not already done so.
But Do they Help?
At times like these, I think of Lou Gehrig and Stephen Hawking. Lou Gehrig died 2 years after his diagnosis. Would that have changed today? Probably not. It may have been extended his life by a few months, or he may have been diagnosed a bit sooner, but essentially nothing would have changed. He falls into the 80% category.
Stephen Hawking lived for another 50+ years after his diagnosis. Would his progression have changed? Again, probably not. He is definitely in the 20% category. I joke with my wife that I am just like Stephen Hawking… well almost. Okay, he may have been a bit smarter than me, but I am DEFINITELY funnier!
Let’s put this into perspective. As per the ALS Society of Canada website, 80% of patients, once diagnosed with ALS, have a life expectancy of 2-5 years. These drugs currently extend life by months, not years. But it is a start. Why only a start? Because over the last 100 years, the bulk of the research has only been done in the last 10 years. I refuse to believe more cannot be done. I HAVE to believe there is more that can be done.
A Cure is Built on Hope… and Research!
So, I’m a bit of a Star Wars nut. We’ve all heard of Luke Skywalker or Yoda or Darth Vader. In the first Star Wars spinoff movie, Rogue One: A Star Wars StoryTM, the Rebel leaders are arguing over the news brought to the Rebel Council by Jyn Erso, daughter of the Death Star’s chief architect, about a flaw he created in the Death Star and the need to launch an attack against the highly secure Imperial installation of Scarif where the Death Star’s plans are stored. The Rebel leaders declare the odds are too great and to launch an attack and there is no hope in winning a battle against the Death Star. They declare the rebellion finished. Erso, speaks up shocked at the suggestion of there being no hope. ‘Rebellions are built on hope!’, she argues.
For me, I see this disease as the Death Star and a cure is what I hope and fight for. Those plans are the research needed to find a cure. Whether it be for me or for future ALS patients remains to be seen.
Having said that, I start my virtual mobility challenge as I ride across Canada on December 1, 2023 to raise funds for the ALS Society of Canada. The funds raised will go to support the following:
- ALS research
- Advocacy
- Patient and care-giver support, including equipment loans and equipment funding assistance
For those who have contributed to my fundraising campaign, I THANK YOU. If you haven’t done so, please consider either of the following:
- Making a donation via my fundraising page
- Join me by doing your own virtual mobility challenge and:
- Link to my fundraising page, or
- Create your own fundraising page
- Support me by sharing this with your network on LinkedIn, Facebook or other social media platform
Whatever you choose to do, you will be helping not only me, but the 3000 people in Canada and over 200,000 around the world living with ALS, and the caregivers providing support to each and every one of us.
I have hope that one day there will be a cure. Please join me in sharing this hope.
My ALS Challenge 
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