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??