Healthcare issues aren’t nationalistic.  When one country faces issues with accessing vital medicine or another important issue, others surely may follow suit.

Occasionally, I’ll take on international issues if they are relevant to our community because it could affect my fellow LAM sisters, TSC advocates, & other transplantees I know globally.

Today is one of those days…

LAM Action & Tuberous Sclerosis Association friends, please take heed for future reference for those you serve who may have had transplants or may need them in the future. Even though it primarily affects renal transplantation & drugs now, it sets a dangerous precedent for similar problems with other organs.

I was distressed to have this information passed along to me via another healthcare chat/transplant friend yesterday.

I agree with his assessment that this is a disaster.  Transplant patients need more options, not less.  Especially with immunosuppressive regimens.

NICE‘s (National Institute for Health & Care Excellence) full final appraisal regarding their decision can be found here.  While detailed & extensive, it still doesn’t make sense.  I also think it goes against their mission.   This decision is not improving health or social care.

I agree with the British Kidney Patient Association (BKPA)’s assessment on the situation. (I’ve linked to the appeal document for adults which can be downloaded.)

The problem is significant because according to the BKPA this puts as many as 400 or up to more than 700 patients (by NHS estimates) at risk for rejection & potential graft failure because they can’t tolerate the specific NICE recommended drugs, but can tolerate the others that NICE is rejecting.

However, this isn’t the first incident where NICE has put patient interests last.   This Guardian news article is but one of a plethora that come up when searching under NICE blocking access to drugs. According to this link & general searches this has been quite frequent with Cancer drugs the past few years.

The problem is, that the National Health Service (NHS) takes their cues from this entity.  Such decisions do have a ripple effect with access to life-saving drugs.

I hope other organizations will band together with the BKPA to contest the NICE ruling & force them to overturn their decision.

Lives are at stake.

This type of potential rejection issue is preventable by keeping full access to ALL immunosuppressant drugs at the ready for those who need them.