PUSH FOR DYSTIC FIBROSIS DRUG AVAILABILITY IN WEALDEN

Wealden MP Nus Ghani recently met with Horam resident Christina Walker at an event hosted by the Cystic Fibrosis Trust. She further called on the Government to work closely with NHS England and Vertex to make the drug Orkambi available on the NHS. 

Christina’s son, Luis, has Cystic Fibrosis and has been leading a campaign to make Orkambi available on the NHS. Orkambi has a significant impact on Cystic Fibrosis, with research showing its considerable positive effects in offsetting decline in lung function.

Currently, Orkambi is not available on the NHS, as NHS England and Vertex, the drug manufactures, have not yet been able to reach an agreement on pricing. Earlier in the year, Nus welcomed Luis and Christina to Parliament to discuss how she can support Luis’ campaign.

Prior to the event with the Cystic Fibrosis Trust, Christina had handed in a petition of 75,000 names calling on Vertex to reach an agreement with NHS England.

Nus Ghani, MP for Wealden, said: “Luis and Christina are some of the most dedicated and inspiring campaigners I have met. I was delighted to meet with Christina to re-iterate my support for pushing NHS England to come to a sensible solution.

“I wrote to Sarah Wollaston MP, the Chair of the Health Select Committee, and it’s great news that the Health Select Committee are looking into the availability of Orkambi on the NHS.

“Orkambi could have such a positive impact on so many people’s lives, and I will be continuing to push my colleagues in Government, as well as NHS England, hard to reach an agreement and make Orkambi available on the NHS.”