Rare Diseases – Strangford Cases discussed at Westminster.
Jim Shannon, MP for the Strangford constituency, was speaking at Westminster in the Commons during debate on the NICE availability of Drugs for Rare Diseases.
Mr Shannon said: “I fought very hard to see medicinal cannabis legalised for my beautiful young constituent Sophia Gibson, and what a difference that has made in her life, as it has to the lives of others.
“Her parents had no option other than to uproot their family and move to Holland to get the treatment that Sophia needed. At the same time, they were respectfully knocking on doors and following the system through to a Home Office Minister, and getting clinical assistance in order to bring about a change in the law regarding medicinal cannabis.
“Eight months later, their daughter has been at school more than ever before in her whole lifetime. She has had substantially fewer admissions to hospital, and has attended school parties that were in the past impossible—they were too much for her—without this medication. She is a very different young girl today because her parents, Darren and Danielle, fought the battle in the right way and in the right place. Today, we have all presented our cases for the right battle, in the right place, at the right time and with the right request.
“Since that time, I have had many other parents coming to me and asking me to help secure the drug that their child needs. A mother in my constituency with a two-year-old son called Lorcán who would benefit from Orkambi, a second precision medicine, which targets the root cause of the disease, and it would benefit about half the people with cystic fibrosis in the United Kingdom of Great Britain and Northern Ireland. Cystic fibrosis is a terrible illness that affects the lungs and digestive system of people with the condition, who have a median life expectancy of just 31 years old.
“I say this very respectfully, and I hope it will be taken into account: Vertex Pharmaceuticals, NICE and NHS England must end the protracted negotiations for the drugs Orkambi and Symkevi. We must break the stalemate between the three parties and provide access to these drugs, which could so vastly improve the quality of life of my constituents. They want and need that drug desperately.
“My heart aches as a father and grandfather who would do anything for his children and grandchildren, and other right honarable and honorable. members would do the same for theirs. The block on life-changing drugs affects not only the child but the entire family. If a child or adult has a physical disability, their family also feel that and live with it every day.
“Many families in the UK do not have access to life-changing medication, and I wholeheartedly and sincerely urge the Minister and his Department to enter into talks, find a way forward, and just do better so that people can live better.
“The Government have set aside £40 billion for extra health support. I welcome that, as do all members, and I gently suggest that some of that money should be set aside for life-saving drugs,” added Jim Shannon.
