Bosentan decision delayed by NICE as they deem it to be non urgent and not in demand.

[adow]

I wonder if anyone is being affected by "NICE" decisions regarding Bosentan? My husband had great success with a 6 month trial from the Royal Free. NICE are being very unhelpful in granting the use of it. They were due to make a decision about now, but have put it back to November (at the earliest) as they deem it to be not needed and not of any urgency. My husband has had some adverse reactions to Iloprost and had been admitted to hospital through it. Bosentan meant that he had no ulcers, no gangrene, no passing out and much more control of his Systemic Sclerosis and his Raynaulds as well. This is a huge blow to us, I just wondered if anyone else has had any experience of NICE ? their decision making, and disregard to the positive effects of certain medication? I do understand about costs, but the Iloprost and hospitisation has cost more in the long run.

[Amherst]

There are ongoing discussions with NHS England from many directions to obtain medication for severe cases and it is NHS England that is making the decision, not NICE, about the criteria for broader access to bosentan.

Hope this clarifies things.

AHM

[adow in reply to Amherst]

Thanks for the info. My concern is that NHS England (sorry) are delaying they decision as they think it isn't urgent or needed. It sounds like they have already made their minds up. It made a huge difference to my husband, his health and quality of life. Like many other people, I want to get what is best for him, and if Professor Denton says it is best for him, that's good enough for me. Thanks for your info. Cheers x

[Amherst in reply to adow]

Don't worry - Prof Denton is on the case!!

AHM

[146nanab]

Dear Adow, sorry to hear this, I must say I haven't heard about NICE or had an experience with them. I have only just started taking Bosentan myself after having several iloprost and other medication that has not helped. I'm yet to see the effects of Bosentan but from what I have read it seems its going to help. Now my worry as well is in six month's time when the weather is getting cold and i need the help, the decision from NHS may still be negative and I will go back to a bad state. I feel your pain and I pray we get a decision sometime soon.

Lets keep our fingers crossed and hope for the best!