Benra and NICE

[EGPAGuy]

Calling to everyone with EGPA being treated with Benralizimab. For me it has been life changing and hope to soon be off pred completely having tapered down to 1mg/day. Next May NICE will make a decision on Benra and EGPA - lets hope for a positive result. However a likely outcome could be to stop us using or making more difficult access to Benra via the Asthma clinics. Benra treatment costs the nhs 15000 a year per patient so this is a real risk. I intend to do a bit more research and potentially ask this community to visit the NICE website and tell our stories and how Benra ( if its the case) has positively effected our lives. I got this information yesterday from Prof Jayne at Addenbrookes.

[Reboundman]

fingers crossed on that. £15k per person is a lot of money I can see why this will be at risk - will we know in May 25?

[EGPAGuy in reply to Reboundman]

Probably soon after 9th.

[AmyS1]

The cost has to be compared to real cost of admission to hospital and the net cost saving. This cost is less than the cost of 3 days in intensive care in the UK or 5 days on a general ward. If this medication keeps people out of hospital it has the potential to save vast sums of money.Biologics are also now used first line in many auto immune conditions due to the cost savings! eg Crohns Disease. Hopefully people with rare diseases will continue to access this.

[EGPAGuy in reply to AmyS1]

Agreed which is why after xmas I will provude links where we can all tell NICE about our journeys

[Sprocker16]

Hi EGPAGuy

My son has EGPA. He was diagnosed 2 years ago after ending up in intensive care with all kinds of problems, including lung involvement.

He was put on high dose prednisolone, and rituximab which saved his life, but after discharge he continued with problems. He was then put on Nucala/Mepolizumab, which has been a godsend! He is literally a different boy! (Well boy for not much longer. He turns 18 tomorrow-a milestone we didn’t think he would reach!)

He has been completely off Prednisolone for a year and has now stopped taking rituximab. He’s in college now. Something we didn’t think would be possible, because he had severe fatigue and could do nothing but sleep.

I am hoping benralizumab will be approved for EGPA and you can continue taking it, but I was wondering if you’ve tried mepolizumab. You could ask to be put on this instead, if Benralizumab isn’t approved.

Just incase this helps anyone…he is also prescribed vitamin D, 1000iu, because apparently there is some kind of link between low vitamin D levels and vasculitis. Sorry to be vague.

Good luck!

[EGPAGuy]

Really sad to hear someone so young has EGPA. I initially started on Mepo but i couldnt reduce pred below 7.5mg daily so switched to Benra which has been life changing for me . In the Uk as I understand it neither Mepo or Benra are approved for EGPA although Mepo is approved in the US. I fear Mepo will also be affected by the biologics review..in the Uk we get access to the drugs via the asthma clinic as nearly all of us have severe or eosinophilic asthma but the danger is this will no longer be a route to the drugs. I will do my research after xmas and hope to provide links here where we can all tell NICE about our journeys. Best wishes to your son. Lev

[zoe69 Moderator Volunteer Vasculitis UK]

The appraisal is coming up soon, and I really hope it will be approved as relying on asthma clinics is not the answer for treatment for EGPA patients. The criteria should be different to start with and the post code lottery treatment would be avoided.