Saturday, 9 July 2011

What price well-being?

What price do you put on well-being? And what is the cost if that price is too high? The drugs I currently take, in monetary terms, cost well over the amount of my annual income. In fact just one of them costs more than my annual income. I have eight different regular meds. I don’t pay for any of them.

I am extremely grateful to have excellent access to medication. I am equally thankful I have a prescription exemption certificate. I was even glad to have the dreaded self-injection disease modifying treatment Rebif. That can’t have been cheap.

In April, I read an interesting post about the price of DMDs by Lisa Emrich on her blog Brass and Ivory: Life with MS and RA.

Yesterday, I was daunted when my MS Specialist Nurse told me the UK market price of the trial drug I have been on. 

Fingolimod, now called Gilenya, costs many thousands of pounds. It is a daily capsule and each week I am swallowing hugely more than my weekly income worth of it. The trial has ended.  I and fellow trial patients are now on an extension until NICE and the PCT decide how to prescribe Gilenya and who is eligible for it.

These will be difficult decisions and people’s health and well-being are involved.

I was devastated today to be told my blood count from yesterday’s test show my neutrophils are again severely depleted. I am suspended from the extension trial until those pesky pacmans return to ‘normal’ strength. I have another blood test in two weeks. I desperately hope my blood count allows me to resume taking Gilenya.

It is hideously expensive but the upset caused to me by being told I can’t take it cannot be priced. Without drugs like Gilenya, my well-being might be as crushed as my pacmans seem to be. You can’t buy well-being but I’m sure if the price of my meds is too high for my PCT to stand, the cost to me would be the loss of it.


  1. I think it all evens out - some people pay taxes to the NHS for years and never need much from it - - and they are fortunate. But I want to live in a society where people get the best drugs for their condition and never mind the cost - I think health and well-being are the most important things.

  2. Indeed, as Daphne says, enabling people to receive the drugs they need is an essential hallmark of a civilised society. Sorry to hear about the Pacmans, Toots, hope they're back to normal soonest.


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