Meeting of the Parliament 20 June 2018
I am pleased to close the debate on behalf of the Scottish Conservative Party, and I thank the Labour Party for giving us the opportunity to highlight once again what amounts to an anomaly in the process of approving drugs for general use, particularly portfolio medicines. That is especially true in the cases of the drugs Perjeta and Orkambi.
We have heard how Perjeta can prolong the lives of women who are suffering from terminal breast cancer by up to 16 months, and we have heard how Orkambi, unlike traditional medicines for the treatment of cystic fibrosis, targets the root cause of the condition and has the potential to preserve or even restore lung function, thereby improving life expectancy and the quality of life of patients.
In speeches to the chamber, I tend to shy away from quoting constituents, but in this case I will make an exception, because their experiences and words highlight the issue that we are debating far better than I ever could. Willie Rennie has mentioned Ruth McEnaney, who has a young son. Ruth’s mother wrote to me and asked that I speak on her behalf. She says:
“From this early age her daily regime of medication was huge, 60 tablets a day with added ones when required and intravenous antibiotics on occasion too. She has also had daily physiotherapy from us twice a day and every kind of activity added to keep her fit and active, keeping her lungs in good shape. This must have cost us thousands of pounds over the years, with dancing 4/5 times a week, singing and trumpet lessons etc. I have never regretted one penny of what we have spent on this wonderful, kind hearted intelligent young woman. Having completed a degree in performance music, she has gone on to work with children and young adults with Autism—now a piano teacher herself. She also has worked extremely hard on her fitness as an adult which is the main reason she has got to being 31 years old!”
The age of 31 has already been mentioned as a key age.
“As I said before she is now a Mum too, dedicating her energy to bringing up her 4 year old son, but now on a downward spiral with her health, having more hospital admissions in the last 6 months than ever before and struggling with her lungs and her bowel with blockages now a regular occurrence and chest infections too.”
Ruth’s mother goes on to say:
“Ruth is desperate to stay alive to see her son grow up, to take him to school, high school and beyond, which is what most of us parents take for granted. I cannot therefore understand why there is a drug which could potentially transform her life, sitting on a shelf, while people say the cost is not worth it for her and many more wonderful, courageous young cystic fibrosis warriors. They have battled for so long already along with us, I’m hoping and praying that today will be a landmark day, to change their lives forever, giving them the gift of improved health and long life!”
As Willie Rennie said, today, Ruth attended the funeral of her last surviving friend from her days at the cystic fibrosis clinic at Crosshouse hospital. He was 26 years old—five years younger than my constituent’s daughter. Time is precious when we are talking about improving the quality of people’s lives, giving them time with their families and allowing them to continue to achieve, as Ruth has done.
Most debates in this place are about finding a way to gain a political inch on our opponents, to dodge the bullet of an intervention or to get out of here unscathed having landed a blow, but this afternoon’s debate is not. It is not about politics. It is about finding a way—and doing so quickly—to resolve a situation that is eminently solvable.
I fully recognise that it is not for politicians to make medical decisions and that there is always a tension between those medicines that are approved and those that are rejected, but I make a plea to the cabinet secretary to get the parties round a table and find a solution, because that is most definitely within her power.
16:53