Forum

Wheelchair users denied access to DMTs

I’m interested in other opinions about the fact that:

“People aren’t given DMTs, including ocrelizumab, if they’ve been using a wheelchair for at least six months. This is because there’s not enough evidence at the moment that DMTs will make enough difference to their MS”

Taken from the MS Society site.

I’m a wheelchair user now and have been for almost 2 years. My diagnosis was changed to SPMS which excludes me from DMDs anyway but even if I was still RRMS this criteria set by NICE would prevent me accessing treatment.

This seems to be based on an assumption that if someone cannot walk their remaining function and quality of life is not worth preserving. I would argue that with few other symptoms - no impact to my arms, vision and minimal impact to cognitive function - I may in fact be just as able as someone who may have lost sight or the ability to use their arms.

Furthermore it potentially accelerates disability and dependence. As a wheelchair user with full use of my arms I am pretty much independent. I can transfer unaided, I am raising a teenager as a single, wheelchair bound parent, I cook meals, do laundry, walk my dog on my scooter and can use the Internet for any shopping we need. I rely on a cleaner a few hours a week and occasional help from friends and family BUT I have no carer and manage to shower, get dressed, etc unaided.

By denying someone like me access to DMDs simply because they have been in a wheelchair for more than 6 months they’re at greater risk of a relapse that could affect their arms for example and take that independence and quality of life away.

I’m unsure as to how it has been decided this would therefore not “make enough difference” to their MS??

You might be interested in the “Think Hand” campaign on the Barts Blog.
Think Hand – Multiple Sclerosis Research Blog (multiple-sclerosis-research.org)

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I have had ms for over 20 years.
I have been on dmt treatments for the last 13 years. About 4 years ago my ms took a shift and walking became really bad and started to use a wheelchair on and off regularly for distances. I was moving into spms. I was in a fight.
My neurologist put me on ocrevus two years ago. I am winning. Maybe changed course. So many good days. Haven’t used my wheelchair this year. I still get bad days but manageable and short lived. So def need to fight for a treatment that will stop progression and keep all your limbs as functional as possible. A wheelchair gives you freedom and independence when your not working right. I can’t say enough how much this drug has done for me. More improvement after each infusion. Slow but steady. Keep fighting. So much hope now with these new treatments.

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This is ridiculous if you ask me. I agree wholeheartedly with you on this one, Surely , putting someone on an effective dmt to prevent future further relapses is the most common sense approach. People without MS assume that mobility is the only factor worth preserving, which is totally wrong !! Please try getting a second opinion from a different neurologist.

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Thank you. It was ocrevus I had asked about so I will ask my new neurologist and push for a different outcome. I’m so glad and encouraged that you’ve seen such a positive response.

Thanks for this. I still struggle a bit to understand why they need a study to tell them that lower limb function isn’t the only thing worth preserving and that preventing progression that might affect your arms is as important (I’d actually say more important these days) than being able to walk. Surely the criteria should be based upon something else.

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I agree, and it’s your hands that keeps you independent, not legs. The Barts team understand this, but guess they need evidence to prove the obvious.