Following the science
October 14, 2020
I don’t often talk about the nitty-gritty of my MS, just the broad strokes, but I think it’s time for me to dish out some details in the hope that it will explain the need for change. And, if you stick with me, you will see why today is the day for me to write it, and what it has to do with our election in BC.
My MS began with my version of the Big Bang – no MS to not walking in 4 days. I never really got back to work, and within 6 months my career as a school principal was finished and I was a full time wheelchair user. Gradually my severe fatigue got worse, and for the last 5 or 6 years, I’ve spent roughly 16 or 17 hours a day in bed, most of them asleep. But this is no sob story – no pity parties here. I have gone on to fill my available time in many productive ways and I intend to enjoy every minute I have.
At times, I thought that there was little that could be done for my MS with the various treatments being offered. I quickly went through 5 disease modifying therapies (DMTs) – Rebif, Tysabri, Gilenya, Tecifedera, Aubagio – all of them promising to slow my MS down to some extent, while bringing with them side effects, big and small. I stuck with it, because the rate my MS had progressed was scary – I was prepared to try all the approved therapies as insurance policies for the future.
So, the “nitty-gritty” was a whole of things going on in the most inconsistent manner possible. One day I’d be non-verbal on and off, on and off – the next I’d transfer off my wheelchair and on to the toilet by myself, and not be able to get off without someone lifting me. I’d plan a short trip out in the couple of hours I had before I knew I had to be back in bed, only for something not to be working up to its previous meagre standards, and I would have to cancel, and on and on. Nothing was predictable, not even in the small pockets of time I knew I had to work with each day. My 7 or 8 hours a day out of bed full of these inconsistencies.
Three years ago, my neurologist suggested I try Rituximab. It’s a treatment for Rheumatoid Arthritis and some lymphomas, given as an infusion every 6 months. It was off-label for MS, however, as it had never completed clinical trials. My neurologist had used it in the US for MS, and told me it had been successful, and given that it was already being used for other diseases, its side effects were known. It seemed better than doing nothing – which was what my treatment plan was at that time.
After the first infusion I felt the predicted side effects for a few days, but the first 6 months were really no change – and by that I mean full of change! Every day the same inconsistent little roller coaster. As I moved into the second 6 months I realized that I hadn’t used Proloquo4Text, the app that I used to speak for me when I was nonverbal, for months. I was still spending the same time in bed, but the time out of bed was getting to be clearer, consistent, something I could work with.
The third set of infusions followed the same plan – but 5 months in, the old, ugly roller coaster reared its head. I had fallen into what was euphemistically called “the crap gap” – a period where the positive effects wear off, and the crap comes right back. The reminder was humbling. Let’s be clear here – the 5 months are no joy ride. I’m weak, fatigued, can’t walk, have pain – you name it – but the difference with the previous version of my MS? Night and day.
So, all is well, you may think. You have a drug that gives you better quality of life 5 months out of every 6 – what’s the problem?
Well, this isn’t just about me. It’s about everyone with MS. It’s about access to treatments that are approved by Health Canada, in a timely and fair way.
Let’s go back to Rituximab – an off-label treatment. That means it’s not approved by Health Canada for MS, and as such, most insurance plans and no governments will pay for it. And, a “better mousetrap” came along – Ocrelizumab aka Ocrevus. The younger sibling to Rituximab – a “humanized” version of it – described to me by one neurologist as “the clean drug”. Health Canada approved for Relapsing Remitting MS and Primary Progressive MS – the first treatment for PPMS! Yay! Everyone gets that one, no?
Not so fast. Somehow, BC has approved Rituximab for RRMS and Ocrevus for PPMS. BC’s approved version for RRMS is not approved by Health Canada – how can that be? And, Rituximab now has “biosimilars”, as it has moved “off patent” (think generic store brand vs Tylenol, for a very rough and ready analogy), and those of us on Rituximab, for whatever disease, have been told we must use a biosimilar from February. So now not only am I not going to be taking a Health Canada approved treatment, I’m going to be taken a biosimilar of a treatment not approved by Health Canada – but paid for by the Government of BC.
The last two months have been rough. One day in mid-August I woke at 6am and I was numb from the hips down and couldn’t move my legs at all. Two weeks ago I was nonverbal for 3 days. There have been an ongoing round of up and downs, pains, weaknesses, countless extra hours in bed. On Friday I had my last Rituximab infusion, and I spent the last 3 days in bed recovering from its side effects. Today I woke up and my head was as clear as a bell. I think the three hours I spend out of bed this morning will be productive. I’m excited for the next 5 months. But what will my next infusion bring – when I move on to an as-yet unknown biosimilar? Will the side effects be the same predictable 4 day pattern I’ve grown used to? Will I get my consistent 5 months?
Dr Aaron Boster, a neurologist from Ohio, talks about the concept of undertreated MS. He says:
“Forgo the flawed escalation model, in which providers prescribe mildly effective drugs and allow patients to accrue neurological disability before escalating them to a more effective agent. Brain lost is never regained, and early brain and spinal cord damage sets a poor long-term trajectory. It is not the clinician’s job to be paternal and decide what risk a patient should or should not be exposed to. Instead, it is the clinician’s ethical obligation to educate the patient on the seriousness of untreated or undertreated MS and help their family understand how to place the risks and benefits of the given therapeutic in the context of the disease.”1
Our BC model of treating MS is built on exactly this. It’s a model where we need to “fail” at less effective drugs to get access to more effective ones – but it’s not the clinician that’s treating us paternally – it’s the government, through its control of the drugs we can access, in the hope of saving money. It’s a false economy. Money saved now on less effective treatments becomes money spent later in expensive home and long term care, money spent on wheelchairs, adapting houses, all manner of costs associated with the disability that accrues, because “brain lost is never regained”. And, the human cost. The poor quality of life, the wasted time, the lost potential.
So, this election, I ask you to ask the candidates you might see or the leaders of the parties, what are they prepared to do to ensure that people with MS have timely access to Health Canada approved therapies – the best therapies, the ones with the best outcomes for all of us – because if 2020 has taught us anything, it’s taught us we must follow the science.
1 https://www.neurologylive.com/view/treating-ms-a-simplified-strategy-boosts-patient-and-provider-satisfaction
