Orkambi and Cystic Fibrosis Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Bambos Charalambous
Main Page: Bambos Charalambous (Labour - Enfield, Southgate)Department Debates - View all Bambos Charalambous's debates with the Department of Health and Social Care
Orkambi and Cystic Fibrosis
Bambos Charalambous Excerpts(6 years, 1 month ago)
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Bambos Charalambous (Enfield, Southgate) (Lab)
It is a pleasure to serve under your chairmanship, Mr Evans.
I was recently visited by a constituent who has twin nine-year-old daughters, one of whom—Holly—has cystic fibrosis. At present, Holly can run, play and lead an active life, but she still needs treatment and will get worse. She receives treatment at Great Ormond Street Hospital and the Brompton Hospital. Because of her genetic composition, there is still no drug available that will help her to survive beyond her thirties, but with the research and development of drugs for other cystic fibrosis sufferers by Vertex, there is hope for Holly.
For the 10,000 other cystic fibrosis sufferers, there is a chance that their lives will be improved, but that hinges on drugs being approved by NICE. We know that NICE has already approved the drug Kalydeco, which only works for the 2% of cystic fibrosis sufferers whose genetic make-up it is compatible with. However, Orkambi has not been approved, despite potentially helping a wider tranche of cystic fibrosis sufferers. NICE has ruled that that would be too costly and that there is uncertainty around Orkambi’s long-term value and impact.
As we have already heard, Orkambi is widely available in the USA and in several EU countries that have seen the clear benefits of not having people spend time in hospital. In trials for Orkambi, there has been a 61% reduction in hospitalisation among those using the drug, and over a 96-week period a 42% reduction in lung decline. It is therefore disappointing to learn that despite Vertex trying to negotiate a pipeline deal with the NHS over future drug developments to tie in with Orkambi there is still no agreement. Are we really saying that there is no scope for negotiation? What price are we placing on the lives of cystic fibrosis sufferers?
Despite Orkambi being unable to help Holly, the fact that her parents are willing to campaign for others to get help is a testament to them and to the cystic fibrosis community. I ask the Minister to put pressure on NICE to reach a solution with Vertex, so that cystic fibrosis sufferers can get the medication that they need and deserve, and get it urgently.