Indiana Smith Age 4 & Everyone Else That Has Cystic Fibrosis 

 

NICE on the 3rd of November 2023 that Modulator therapies currently used to treat Cystic Fibrosis should no longer be funded on the NHS for those who can't currently access them.

My 4 year old daughter Indianna Smith does.
Children with Cystic Fibrosis have to take multiple medications / antibiotics Physios / Nebulisers / Vitamins daily.
They have regular hospital appointments and have to undergo various different tests such as X Rays/ CT scans.
My daughter has stayed in hospital 
Multiple times due to her condition.

As parents to children with Cystic Fibrosis we carry a huge burden of care and work hard daily delivering their treatments to keep them alive.
Without modulator treatment the condition can be fatal at a much lower age and cause suffering and an unfulfilled life for those unable to access it.

Kaftrio is known as a miracle drug, it has completely transformed and saved the lives of those who are fortunate enough to have already accessed it. It has so many positives including that it adds on 40+ years to the lifespan of someone with CF and enables them to live a more comfortable and longer life.
It is currently licensed for 6+ in the UK.

However the news from NICE on Friday has questioned wether it will continue to be funded for those like my daughter who aren't yet at the age to benefit from it.
If this goes ahead it will be devastating for the CF community.

Please can you help us by raising this matter in Parliament and getting it back on the agenda for all of the children with CF that so desperately need and deserve the treatment and a chance at a better life.

The Cystic Fibrosis Community would be extremely grateful.

If you would like any further details on Cystic Fibrosis or this news please contact the Cystic Fibrosis Trust.