Orkambi and Cystic Fibrosis

Marion Fellows Excerpts

Monday 19th March 2018 Westminster Hall

[Marion Fellows (Motherwell and Wishaw) (SNP)]

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

Where do I start to sum up this debate? It has been a truly awesome experience, and I congratulate and thank all the Members who took the time to attend. I have rewritten my speech all the way through the debate, which I will try to summarise as best I can.

The petition was signed by 371 of my constituents. As has been said, the general public care about this. I thank the Butterfly Trust, which is the CF charity in Scotland, the Cystic Fibrosis Trust and the CF support group for parents in Scotland for all the assistance they gave me to prepare for the debate. We heard many passionate and informed speeches. There is true cross-party agreement. We heard how CF sufferers could benefit from Orkambi and how it could transform their lives.

I must declare a personal interest. My 16-month-old granddaughter Saoirse was diagnosed with cystic fibrosis shortly after she was born. On hearing about the debate, my daughter-in-law enlisted all of her friends and family to sign the petition, even though she knows that Orkambi will not help her daughter. Vertex is developing new treatments all the time, and the use of Orkambi can only help that research.

Saoirse is lucky—she is pancreatic sufficient, which means she can digest food—but she is on daily antibiotics and additional treatments. As a grandmother, watching her going through physiotherapy is heartbreaking. Her parents were told that they must not comfort her as she needs to get used to it, because she will need physio for all of her life. She cried, and I cried. Her grandfather, who is here today, cried, too. However, she is getting used to it. CF sufferers and their families are amazing people—I discount myself from that. They care about each other. The proof of that is here today, in more than 100,000 signatures and so many Members taking part in the debate.

I pay special regard to the hon. Member for Dudley North (Ian Austin). I apologise that I could not attend his roundtable—I have serious family illness at the moment. The fact that so many Members attended shows how important this is to both Members and their constituents. We do things not just because we want to, but to help our constituents. He talked a lot about the cost of Orkambi and how we should look better at cost-benefit analysis. We should also look at the contribution that CF suffers could make, were they able to. We must all deeply reflect on that. As he said, when an everyday drug is denied to CF suffers, that is another day when their lung power is damaged. We cannot allow that to continue.

As one of my colleagues stated, the Scottish Government are working hard to improve access to drugs such as Orkambi through changes to the individual patient treatment request to ensure that patients in Scotland get access to the right treatment at the right time. Orkambi could be accessed through that, but the Scottish Government’s role is to try to ensure that everyone in Scotland gets equal treatment, which is important all over the UK. There should be no postcode lottery for treatment.

[Mr Sweeney]

Does the hon. Lady agree that the Scottish Government and the UK Government should consider an interim acceptance period for drugs under active price negotiation when organisations such as the Scottish Medicine Consortium have agreed that there is a clinical benefit? That would be a good way to ensure that people get immediate access. Two years is two years too late for many people.

[Marion Fellows]

I agree with the hon. Gentleman. We are talking about people whose lives are shortened and people whose lives are deeply affected. These people could be of such benefit to society as a whole. It is difficult for me to think beyond my granddaughter, and it is also difficult to listen to stories of what might happen. I know she is lucky, but I also know and am passionately concerned about other children who are even more affected by CF than she is. We owe it to them and to people who will inherit CF in future.

I have to be a carrier of the CF gene, and my husband must also be a carrier. We were so lucky that none of our children were affected. It is a terrible, silent disease. The fact that CF sufferers cannot even get together for comfort and mutual support—it all has to be done through parents’ groups—is even more heartbreaking.

[Bob Stewart]

I am deeply affected by listening to the story of the hon. Lady’s granddaughter. When did the hon. Lady and her husband know that they were carriers? That is pretty important.

[Marion Fellows]

I probably am a carrier—unfortunately, for another reason, we have not been tested yet. That is another issue that we will deal with. It would help future research. Actually, after my daughter was tested, she said to me, “Mum, you and dad must go out and buy a lottery ticket—you must be the luckiest people around,” because I have three children and none of us has CF.

The Scottish Government are encouraging patient representatives to participate in Scottish Medicine Consortium meetings. That must be a good driver to let clinicians and other medical people see with their own eyes the difficulties undergone by people who cannot access these drugs.

Sir Roger, you have been most considerate, and I will now sum up. There is an overarching need for a change in the way in which new drugs are approved for use. Cost-benefit analysis needs to be used to calculate the true costs. For example, we should look at reductions in hospital care costs and include the benefits to the economy from the use of these drugs—especially Orkambi, which is our exemplar for now. Of course, CF suffers must be able to play a full part in society and, as we have heard, they could do so if they could access drugs.

Orkambi could be just the start of a whole line of drugs that will benefit CF suffers. No one can cure the disease at the moment, but such drugs will lead to so many more better and productive lives. Yes, there are issues around pricing new drugs. Pharmaceutical companies are not there for charitable purposes, and we all know and understand how expensive it is to create new drugs, but there must be a better way of pricing the cost of new drugs at their introduction across years of their use rather than huge up-front costs.

I was asked by the Scotland parents support group to demand that the Minister takes responsibility for the negotiations with Vertex, and that he brings NHS England and Vertex Pharmaceuticals to the table. Deals and negotiations should never be conducted by email. I am happy to do so, and I wait with interest for his response.