Orkambi and Cystic Fibrosis

Vicky Foxcroft Excerpts

Monday 19th March 2018 Westminster Hall

[Vicky Foxcroft (Lewisham, Deptford) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Roger.

Like many other right hon. and hon. Members, I was inspired to take part in the debate by two constituents. The first told me about his younger sister, who has cystic fibrosis. She has always been very healthy, but she is now in her 30s and reaching the point at which she will need to use additional medications. As he was emailing me, his sister was on her way to hospital to undergo an operation to put a port in her chest so that she could receive intravenous antibiotics. He ended his email by saying:

“I understand that the NHS is under pressure, but this illness is one of the beatable ones”.

The second message I received was from the parents of a 10-year-old girl named Ruby, whom I met soon after I was first elected as an MP when she came here to see me as part of the environmental change lobby. Ruby is a bright and optimistic girl who loves science and maths, swimming in the sea and making emojis to send to her friends. However, unlike her contemporaries, she has to take more than 30 tablets a day to help manage her condition. She also has to nebulise further drugs and have physiotherapy every morning and evening. Her condition brings with it regular visits to hospital for scans and tests.

Although Ruby copes brilliantly with her condition, her parents know that with each passing year, the likelihood of her health declining increases significantly. As well as the obvious effects cystic fibrosis will have on her lungs, it carries a vastly increased risk of diabetes, liver disease and chronic digestive problems. As children with cystic fibrosis grow older and begin to realise the condition’s potential impact on their future, it takes a major toll on their mental health. Ruby’s parents worry about that continually. Knowing that they might live only to their mid-30s is an incredibly heavy burden for a young person to carry. It is not difficult to see that being able to access Orkambi would have a profound effect on children such as Ruby by slowing the progression of that cruel disease, if not stopping it completely.

I will leave hon. Members with a few words Ruby’s father wrote to me that perfectly sum up the impact that access to Orkambi would have on families such as his:

“Whilst it is Ruby who carries by far the most weight of her cystic fibrosis, a drug like Orkambi has the potential to free all of us in her family – and the families of so many other children with cystic fibrosis – from the sometimes overwhelming worries about the future – knowing that next week, next month, next year, a new infection or new problem could arise and the downward spiral that has taken the lives of so many with cystic fibrosis could begin.

We know society has to balance the cost of treatments for all with the needs of individuals. We know society has difficult choices to make. But we believe there is a resolution that can do just that, by bringing together the brilliance of science and a health system that is, and always should be, free for all. Enabling access to treatments like Orkambi would literally change our daughter’s life for good.”