To cost vs benefit evaluators
My first time using this forum 🙂
My partner is type III and still able to walk. No long distances, no steep walkways, but walk.
A couple of years ago we were informed by her neurologist about a potential treatment named ‘Spinraza’. She told us it was under revision and waiting to be approved in the UK. Then it had to be reviewed by the Scottish Medicines Consortium and, if approved, she could possibly be endorsed for the medicine and stop the progress of her illness.
The year after, she went through all types of testing for heart, lungs, spine, nerves, etc. Every doctor we saw told us she was in good condition and they saw no problems to go ahead with Spinraza. That took one entire year and by then Spinraza was already approved and it was already being supplied to children affected with Type I in Scotland.
This year, with the Covid 19 breakout we didn’t hear for any news about Spinraza for months.
Now, early december she have had her annual appointment with her neurologist hoping to get some good news about progress. I always go with her but this year I wasn’t allowed.
She was informed that Spinraza has finally not been approved for adults in Scotland due to a negative evaluation cost vs benefits.
It is being supplied in England, Wales, Germany, Spain, USA, no problems, but not here. After all the tests, the hopes… We were so close and suddenly, some money makers evaluating people as numbers, decided to break our dream.
I can’t describe in words the deep disappointment she came out with from that neurologist visit.
Spinraza has now cut its cost due to other medicines being evaluated and offering competency, yet, she has no offered any treatment and won’t probably get any being almost 35yo and type III.
All we were told is to keep waiting for next medicine, next evaluation cycle, next few years, next this, next that.
SMA is a slow countdown and every day she wakes up is one day closer to a life time in a wheelchair. Her job, our home, our lives… many things will change when that happens. Yet here we are, not doing nothing but waiting.
It is unfair allowing people to dream with hopes and when is so close wipe it out like if it never existed.
I know there are people suffering this illness in a worse condition than my partner and I really hope these people gets a treatment and improves their quality of life. Same goes for all the children for which Spinraza is saving their lives. I am glad families has found the hope they deserve, but this message aims to any of these cost vs benefit decision makers in case by coincidence ever read this.
They can not do this to people. This illness won’t wait for you to decide how costly is to grant someone’s life quality and independency.