Cystic Fibrosis

Jim Shannon Excerpts

Tuesday 8th December 2015 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairmanship, Sir Edward. It is also nice to see the Minister in his place again—whatever the debate might be, there are few for which the Minister and I are not in the same room at the same time.

I thank the hon. Member for Dudley North (Ian Austin) for bringing this important issue to Westminster Hall. It affects my constituents and I am here to speak on their behalf—this is the place for us to do that as elected representatives. As he mentioned in his introduction, in Northern Ireland we have had some good news, with money set aside for rare diseases. Any approach to such diseases needs to be innovative and to take into account all those who contribute, be they academics, researchers or hard-working charities who provide support for those suffering from cystic fibrosis and their families.

I also commend the right hon. Member for Chesham and Amersham (Mrs Gillan) and the hon. Member for York Central (Rachael Maskell) who have spoken. They are doughty campaigners on behalf of those who have Duchenne and on many other issues. It is good to see them in their places and making valuable contributions.

We are surely duty-bound to support and fund those who fight for the sufferers and those developing new treatments. The debate is very much about how we develop new treatments and move forward.

[David Simpson (Upper Bann) (DUP)]

I also congratulate the hon. Member for Dudley North (Ian Austin) on bringing the debate. Does my hon. Friend agree that pharmaceutical companies need to be sent a message that their work in research is not about large profits; it is about curing rare diseases? We saw that difficulty whenever we approached pharmaceutical companies on meningitis B: some companies held out for large profits at the expense of people who were suffering.

[Jim Shannon]

I thank my hon. Friend for focusing on the pharmaceutical companies. They can do a great deal and there is also a role for Government and the NICE guidelines, which direct the direction in which pharmaceutical companies will proceed. The companies are driven not always by profit or margins; criteria also indicate to them what to do.

We should be ever mindful that people are suffering through no fault of their own, so we need to help them move forward. It is good to see facts and figures that show that, on average, a child born in the 21st century with cystic fibrosis will live for more than 50 years. There have been tremendous advances. The innovation and hard work done by charities and researchers is too often forgotten, but it has brought about real results, with new precision medicines treating not just the symptoms, but the underlying cause of the condition. We must go further in that direction. To be fair, cystic fibrosis is one condition that we are probably treating rather than solving at the moment, but we need to see a future where everyone with cystic fibrosis can live a life unlimited, which the facts show is more achievable today than ever before.

Unfortunately, precision medicines are expensive and, as my hon. Friend the Member for Upper Bann (David Simpson) said, it is difficult to predict the cost-effectiveness of new treatments. However, we need to get those treatments and try them out to move forwards. I understand that the Government are considering how we can speed up access to innovative treatments, which I think comes under the NICE guidelines. Will the Minister respond to that in his speech? There are proposals to approve new drugs provisionally while using real-world data to assess their benefits. I welcome that and look forward to seeing more of it.

May I put on record my thanks to the Northern Ireland Rare Disease Partnership under the chairmanship of Christine Collins, who happens to be one of my constituents? We have worked together over the years on this matter. Indeed, in the previous Parliament we spoke to the Under-Secretary of State for Health, the hon. Member for Battersea (Jane Ellison), in a private meeting. She was supportive and allowed us to make positive progress. As everyone knows, health in Northern Ireland is a devolved matter. The Minister there, my colleague, Simon Hamilton, has set aside about £3 million for the partnership, which shows there are positive approaches in Northern Ireland and a positive way forward. Perhaps that could be emulated across the whole of the United Kingdom of Great Britain and Northern Ireland.

It is estimated that one in 2,500 babies in the UK will be born with cystic fibrosis and there are more than 9,000 living with the condition. The facts are stark. It most commonly affects white people of northern European descent—it is much less common in other ethnic groups. Those are the facts, which in my constituency means that we are looking at virtually the whole populace. Other constituencies will have similar demographics, so it is concerning to hear that, but it is encouraging that research has advanced so much that we can pinpoint such factors so that we know where problems could arise.

Babies are screened for cystic fibrosis at birth using a heel-prick test as part of the NHS’s newborn screening programme. The NHS and Ministers responsible are taking correct steps to diagnose such conditions at an early stage. Treatment for cystic fibrosis is not curative, but it seeks to manage symptoms. Medications including steroids, antibiotics, insulin and bronchodilator inhalers are often used. Nutritional advice and physiotherapy for airway clearance are commonly part of management.

Cystic fibrosis patients may also be suitable for lung transplants. NICE provides a number of guidelines on specific treatments for cystic fibrosis, which it is currently updating. They are due to be published in 2017. On organ transplants, I believe that we should all be considered to be donors unless we say otherwise. The Welsh Assembly has taken steps to bring in that in Wales and such legislation is pending in other regions of the United Kingdom as well, but whenever we see stories about those who are managing but no more and for whom a lung transplant would be the beginning of a new life, perhaps we should emphasise the organ transplant system and find a method to make progress on that.

The hon. Member for York Central rightly referred to families. We focus on those who have cystic fibrosis, but let us also focus on those who support their loved ones at times of hardship and difficult health symptoms. I will also plead the case for Prader-Willi syndrome. I have a number of constituents who have it, but that is not unique by any means to my consistency; it is seen across Northern Ireland. We do not hear much about this, which is another muscular wasting disease and also an eating disease—it is an obsessive disease.

The right hon. Member for Chesham and Amersham talked about Duchenne muscular dystrophy. I have constituents who suffer from that and I have attended events just across the way with people from across the UK with it. It comes in different levels and types, but, as she said, there have been advances in medication. The Minister may refer to those in his reply, but we also need to focus on how we can help those families.

Recent developments show that innovation is working in advancing treatment of cystic fibrosis. I commend the Department for its work. I will also mention the hard work done by universities in partnership with private business and enterprise to come up with innovative ideas for new drugs. We can never underestimate the importance of what they do. Just as others speak highly of their universities, I do so of Queen’s University Belfast and Ulster University which are bringing forward innovative ideas for advances in medicine and other things. We could work well together with them on this.

I spoke earlier of the hidden or forgotten sector: the voluntary charities, of which there are many. Where would we be without them and their dedicated researchers? Such people often dedicate their lives to helping humanity overcome disease. The Cystic Fibrosis Trust is just one example. It is the largest charity funder of cystic fibrosis research in the UK. Last year it invested more than £3 million in groundbreaking research and it plans to invest a further £3.5 million by the end of this financial year. By adding our support and funding where possible, we can add to the great work being done and make a real life-changing difference for those with cystic fibrosis and their families.