I don’t understand why you don’t hear much in the way of possible treatments for PPMS. You hear quite a lot about possible treatments for relapsing remitting but very rarely do you hear about PPMS and then when there is a possible treatment is gets rejected on cost. Perhaps the people rejecting it on cost or setting the extremely high price would like to experience life with PPMS or even the life after PPMS because no treatment is available.
My husband was diagnosed in 2001, he was slowly deteriorating and walked with sticks for years. When we were in Spain he was put on some medication that helped slow the progression, when we moved back to the UK he was taken off of it because they said it wasn’t safe long term and within 6 months was in a wheelchair, obviously we don’t know if that would of happened if he had stayed on the medication but I feel unlikely as he had been on it for years. He has been left to deteriorate because he couldn’t have stem cell treatment unless he went aboard, and other treatments not suitable or considered suitable for PPMS.
My husband is totally dependant now, he can’t move, fed via a peg tube and lost the ability to communicate. We care for him and love him because he is my husband, a dad, a son and brother etc. These people deserve a life made better by medication or treatments so why do the likes of Roche make it so expensive and why do NICE refuse it, why can’t they work with the NHS because these are peoples lives, family members and they do deserve treatment if it is available.