Oral Answers to Questions

Debate between Lord Austin of Dudley and Kerry McCarthy

Tuesday 5th November 2019 Commons Chamber

[Ian Austin (Dudley North) (Ind)]

1. What assessment he has made of the effect of the US Administration's decision to withdraw support for Kurdish forces on regional stability.

[Kerry McCarthy (Bristol East) (Lab)]

15. What recent assessment he has made of conditions for civilians in Syria.

NICE Appraisals: Rare Diseases Treatments

Debate between Lord Austin of Dudley and Kerry McCarthy

Thursday 21st March 2019 Commons Chamber

[Ian Austin (Dudley North) (Ind)]

I thank the hon. Members for Blaydon (Liz Twist) and for North Tyneside (Mary Glindon), and the Backbench Business Committee, for arranging this debate. I am here to speak up for people in Dudley with cystic fibrosis, phenylketonuria—or PKU—and spinal muscular atrophy.

I have been campaigning with others to make Orkambi and other new treatments available for people with cystic fibrosis because I was contacted by Carly Jeavons from Dudley, who took part in the clinical trial for Orkambi, and by Samantha Carrier, whose baby daughter Daisy was diagnosed shortly after birth. Samantha has given up her career and now devotes her life to campaigning for access for these life-changing drugs. While listening to this debate, I have been receiving emails, texts and other messages from people around the country—heroic parents of children with cystic fibrosis who work so hard and campaign tirelessly for the treatments that their children need. I know that the Minister has met some of these parents, and I hope he will have some new answers for them today, because they have worked so hard to raise these issues, which really do need to be sorted out.

Before the clinical trial, Carly Jeavons had to take 90 tablets and do two hours of physiotherapy a day. She had a lung function of around 44% and spent two weeks in hospital every three months. She had to choose between the financial hardship of leaving work or her health being made worse as she struggled on at work. She told me:

“Orkambi has changed my life. My health has remained stable. I only need one or two courses of IV’s per year instead of the four previously, hospital visits have been massively reduced and admissions are non-existent.”

Since having Orkambi, she has been able to go on holiday abroad for the first time with her family, and she has got married. She has also started a business and is employing people, so she is making a much bigger contribution to the economy. The Government need to look at the contribution that people who get these drugs can make to the economy, not just at the costs of providing the drugs. I believe that NHS England and NICE are with Vertex this afternoon for yet another meeting about whether these cystic fibrosis drugs can be provided. But this comes three years after NICE appraised Orkambi. I really hope that the Minister will explain how this situation can be resolved and how other situations like it can be avoided, so that patients can get can get access to these drugs.

Let me turn to the issue of treatments for people with PKU. Some of the people who have been leading this campaign are sitting in the Public Gallery, watching this debate. Again, I hope that the Minister will have some good news for them today. As we have heard, PKU is a rare metabolic disease that leaves people unable to metabolise protein properly, leading to a toxic build-up of material that can cause irreversible brain damage. The only existing treatment is a strict diet of extremely low protein, meaning that almost all normal foods are off limits. The diet is lifelong, and sufferers find it stressful and difficult to cope with. I had never heard about this condition until a woman in Dudley called Kirsty Thornton got in touch with me. Since then, I have met the campaigners and taken part in a PKU diet challenge. I have also joined the cross-party parliamentary campaign led by the hon. Member for Blaydon to ensure that people with PKU get access to the treatments and supplements they need.

It is heartbreaking for parents of young kids with PKU who do not understand why they cannot go to their friends’ birthday parties in case they eat the wrong foods that will make them tired, sick and ill for the rest of the day, or for longer. Students say how difficult it is when their friends are going on nights out, or they move to university and the people they share a flat with are ordering in pizzas and so on, or they cannot go out on a date because they do not know what they are going to be able to eat or not eat. This must be really tough for young people.

[Kerry McCarthy]

My hon. Friend will probably be aware that the Government are looking at a new food strategy, and one of the things under consideration is better food labelling. A lot of people think that those who make certain dietary choices do it almost to be trendy, or just because it is the fashionable thing to do, but there are people whose lives are at stake if they cannot get the information on food that they need. Food manufacturers and anyone else involved in the provision of food need to be alert to the fact that it is important that people know what they are going to be eating.

[Ian Austin]

That is a really important point. The PKU campaigners have explained to me that on some occasions when manufacturers have changed the ingredients in food or drinks, that has had a terrible impact because people with PKU have not necessarily known about it, so they have continued to drink or eat things that they have consumed without any problems in the past, but because the ingredients have changed, it has caused them a big problem.

For many people with PKU, taking Kuvan considerably increases the amount of protein that they can safely eat. We are therefore urging the Government, the NHS and BioMarin, which manufactures these supplements, to agree a deal so that people with PKU can enjoy a normal healthy life. I spoke to the National Society for Phenylketonuria this morning, and it told me that the whole PKU community are demoralised. They say that they are working hard but feel that not much progress is being made. What is the Minister going to do today to give these people, some of whom are in the Public Gallery, and others who are sitting at home with their kids watching this debate, to give them hope of this situation being resolved?

My next point is about Spinraza treatment for people with spinal muscular atrophy, or SMA, which affects an estimated 1,300 people across the UK. It can cause irreversible loss of a child’s ability to crawl, walk, breathe and swallow. In the most severe cases, it can cause death. Spinraza is the first possible treatment for those who have SMA types 1, 2 and 3. It can slow its progression and prolong life. From April, this treatment is going to be routinely available in Scotland, and it is already available in 24 other countries in Europe, yet it is still stuck in the NICE process for England, Wales and Northern Ireland.

That is why, in the end, the purpose of this debate is to ask the Government to look carefully at the way that NICE works. New drugs are being developed, and technological changes are happening, so rapidly that the Minister needs to be able to tell us how the way drugs are assessed and licensed, and then approved, will work in future. How is he going to ensure that these ground-breaking drugs are made available to the people who need them, when they need them? In 2016, NICE was not able to recommend the use of Orkambi because of uncertainty around its long-term value, impact and cost-effectiveness. But this drug is available in the USA, across Europe, and, more recently, in Scotland, so when do the Government think patients in England are going to get it? This is really urgent. The system has not worked and patients are being let down.

On PKU, NICE decided to start an appraisal of Kuvan in 2018, but this has since been suspended. NICE is currently reconsidering which appraisal process to use to access Kuvan, and the NHS is considering whether to fund an interim policy for the use of the drug. But, again, this is not enough, and not quick enough. The NICE process sees PKU as rare, but not rare enough. As we have heard, the majority of PKU treatments are assessed by the STA process, which is designed for non-rare treatments. NICE’s approach evaluates the lifelong costs of treatment, meaning that the cost thresholds and the approach to evidence are all designed for more common diseases than PKU. SMA sufferers are waiting for NICE, NHS England and Biogen, which manufactures Spinraza, to come to a deal. I hope we will hear better news on all those things from the Government than we have in the past.

It is my job to listen to people in Dudley who are living with cystic fibrosis, PKU, SMA and other rare diseases, to come down to London and speak up for them in Parliament and to demand, as we are doing this afternoon, that the Government ensure that they get access to the treatment they need and deserve.

Cycling

Debate between Lord Austin of Dudley and Kerry McCarthy

Thursday 16th October 2014 Commons Chamber

[Ian Austin]

The hon. Gentleman is right. It is also important to note the improvements that can be made. Mirrors, sensors and alarms, for instance, can be fitted to lorries to ensure that it is safe for them to use the roads at the same time as cyclists.

[Kerry McCarthy (Bristol East) (Lab)]

I entirely agree with what my hon. Friend has said about lorry safety. Does he share my disappointment that the plan published by the Government today is notably lacking in any commitment to address the issue? Lorries are responsible for a fifth of cycling fatalities in Britain, and there have been fatalities in Bristol recently.

[Ian Austin]

I am disappointed by the plan that was published today, for all sorts of reasons, about which I shall say more shortly, but my hon. Friend is absolutely right to give that example.

A study published today by academics from the universities of Leeds and Cambridge and commissioned by the CTC shows the benefits that investing in cycling would bring. We face an epidemic of illnesses linked to inactivity and obesity, but investment equivalent to £10 per person to boost the proportion of trips made on bikes from 3% to 10% could save the NHS budget nearly £1 billion a year. The wider health benefits could be worth £6 billion by 2025 and £25 billion by 2050. Investment in cycling would prevent heart disease, reduce the number of strokes, and cut diabetes and colon cancer rates. As The Times says in an editorial today,

“Meeting this demand is not to ask for preferential treatment... the requested level would take total funding up to £600 million a year—3 per cent. of the transport budget for 3 per cent. of the trips taken.”

A report entitled “Benefits of Investing in Cycling”, written by Dr Rachel Aldred and commissioned by British Cycling, also shows that such investment would make a massive difference to society. It demonstrates that cycling can have an overwhelmingly positive effect on everyone, whether they cycle or not. The possible benefits range from saving the NHS £17 billion to increasing the mobility of the nation’s poorest families by 25%. Getting more people cycling would enable more people to get the exercise that they need, and would make Britain healthier. Traffic delays in London cost £1.5 billion a year. An increase in cycling would tackle congestion and pollution, and would make our roads safer and our transport system more efficient. It would enable people on low incomes to travel more easily, would make our town and city centres more pleasant places, and would support local economies.

Cycling

Debate between Lord Austin of Dudley and Kerry McCarthy

Thursday 23rd February 2012 Westminster Hall

[Ian Austin]

That is absolutely right. Cycling makes a huge contribution to the economy in cities, towns and rural areas right across the UK.

What plans does the Minister have to improve training for cyclists, as well as for drivers—particularly those who share bus lanes with cyclists—to ensure that cycle safety is a core part of the driving test? One of the best ways of improving safety is getting more people cycling, so will the Minister meet Ministers in the Department for Education to discuss putting cycling on the curriculum, in the same way as swimming, so that every child learns to ride a bike safely and more children take part in cycling?

One big barrier to getting more people cycling is the fear many people have of it, so ensuring that more people learn to cycle properly would help address that perception. Making cycling safer in local residential streets would also help. That is another of the demands from The Times, which wants 20 mph as the default limit in residential areas where there is no cycle lane.

[Kerry McCarthy (Bristol East) (Lab)]

As my hon. Friend knows, Bristol was given cycling city status a couple of years ago, and I very much support his call for a 20 mph limit. I met the Colombian ambassador this morning, and he told me that, for the past 25 years, Bogota has closed its streets from eight o’clock in the morning until two in the afternoon every Sunday and bank holiday so that people can cycle, and up to 1 million people will come out cycling. Is that perhaps something we should explore so that people can get their first experience of cycling on a traffic-free road?

[Ian Austin]

That is a brilliant idea. I have seen it done in Seattle, and it has hugely increased the number of cyclists.

Can we encourage each local authority area to appoint a cycling commissioner to push forward reforms? In that respect, I would go further than what The Times is asking for. Cycling obviously involves the Department for Transport, but local roads are run by local councils, so the Department for Communities and Local Government needs to be committed to cycling. We also need commitment from the Department for Education if we are going to get more youngsters cycling. Given the health benefits of cycling and the need for dangerous drivers to be caught and prosecuted properly, the Department of Health, the Home Office and the Ministry of Justice need to take cycling much more seriously, too. What can the Government do, therefore, to give the Minister the power and authority to get all these Departments working together effectively?