Orkambi and Cystic Fibrosis

Debate between Tulip Siddiq and Stella Creasy

Monday 19th March 2018 Westminster Hall

[Tulip Siddiq (Hampstead and Kilburn) (Lab)]

It is a pleasure to serve under your chairmanship, Sir Roger. I pay tribute to the hon. Member for Sutton and Cheam (Paul Scully). I usually apply to speak in Westminster Hall rather than in the main Chamber because the waiting time tends to be shorter, but I have had to wait today because of the huge turnout, which is testament to his tenacity in securing this important debate. Many constituents have emailed us about how their condition has affected their lives. I will cut straight to the chase and say that all the people who emailed me were unanimous in their desire to see Orkambi made available on the NHS.

In all the representations I have received, whether from families who have been affected by the disease or from world class medical professionals in Hampstead and Kilburn, there is one clear message: cystic fibrosis patients do not have time to waste. I put this bluntly not because I want to state the obvious about a life-limiting condition, which has been made clear by all the contributors so far, nor to suggest that Ministers object to introducing the precision medicines that could extend life chances. I say it because it is the key message that must weigh upon all our contributions today.

I presume that most Members have received a briefing from the Cystic Fibrosis Trust, which does exceptional work in advocating for those suffering from the condition. I am proud to say that I have a constituent, Ffyona Dawber, who is a trustee and is passionate about this debate and patient education more broadly. Ffyona and her colleagues at the trust have told me over and over again about the possible benefits of Orkambi. They say that medicines such as Orkambi have been proven to add years to a patient’s life. They point to the fact that Orkambi has been shown to slow decline in lung function by 42% and to cut the number of infections requiring hospitalisation by 61%. As has been quoted many times, they point to the NICE appraisal of 2016 that said that Orkambi is both “important and effective”. Given that the possible benefits of Orkambi seem to be settled, it is necessary to spell out why the Government should act now and agree a sustainable solution over the cost.

It is also important to highlight the voices of those whose futures depend on the introduction of that important drug. My hon. Friend the Member for Erith and Thamesmead (Teresa Pearce), who is sitting next to me, talked about how we have to speak up for residents and constituents who cannot come here and speak for themselves. Many who have the condition cannot travel to Parliament to witness the debate.

I echo the words of a resident of mine, Caroline Brown, who wrote to me about her treatment for cystic fibrosis. She told my office that she felt “well supported” by the NHS. She paid specific tribute to the doctors and nurses at the Royal Brompton Hospital on the Fulham Road, saying that

“they are utterly amazing. I have had the best care there and I cannot fault them.”

Her tribute to the staff at the Royal Brompton reflects those paid by other local residents, especially those whose children rely on the specialist cystic fibrosis centre at Great Ormond Street. For patients such as Caroline, my constituent, the debate over Orkambi is about enabling our world-leading medical community to focus their efforts more sharply on those with advanced symptoms, and for pharmaceutical companies to get on with investing in research for aspects of the condition where the breakthrough represented by Orkambi still evades us.

It will come as no surprise to anyone to learn how Caroline felt about the situation surrounding Orkambi. As expected, she was clear in her support for its immediate roll-out. She said:

“When I look to the future it would be very comforting to know that, if I was to need it, there would be medication there that would help me. I can’t bear the thought of knowing that there is something out there that could potentially save my life, and that I am not able to take that as I couldn’t afford it. Being symptom free for someone with Cystic Fibrosis would be life changing.”

She went on to underline the consensus that exists among cystic fibrosis sufferers. A lot of them cannot meet and be in the same room for the reasons outlined by other Members, but there is one benefit of social media—I stress one benefit—which is that it has enabled a network of people with cystic fibrosis to discuss and reflect upon the key debates in the community and to share the experience of their treatments. She knows that fellow patients are unanimous:

“They all agree it should 100% be made available on the NHS. It should be available to everyone that needs it...it is sad that money is getting in the way of people's health improving.”

[Stella Creasy (Walthamstow) (Lab/Co-op)]

My hon. Friend is making an incredibly powerful speech. May I add the voice of my six-year-old constituent? She would not benefit from Orkambi, but we must recognise that, if we do not get this right, the other treatments that might help her will be subject to similar delays. She is only six years old, but she does not need any delay. Does my hon. Friend agree that this matter is not only about Orkambi, but about how we deal with life-changing drugs and whether we understand the power of them to make such a difference?

[Tulip Siddiq]

I absolutely agree with my hon. Friend. There are lots of heart-breaking stories from people who are six and even younger who share the frustrations of the people I am speaking for today.

Caroline, my constituent, was adamant that Orkambi is just one frustration that those with cystic fibrosis have over how the current range of treatments are made available. What aggravates my constituent is the fact that cystic fibrosis is the only incurable life-threatening disease where people have to pay for their prescriptions. I greatly sympathise with her view that charging patients for medication, in light of the fact that they often undertake between three to five hours of treatment a day, does not seem to square up to the rhetoric of Ministers who pledge their support for the cystic fibrosis community. As my constituent concludes, some people have to take thousands of pills over their lifetime, so paying for them makes life very difficult. Why should cystic fibrosis be an exception when people with other diseases do not have to pay?

I will close with three questions that I want the Minister to answer. Do the Government accept responsibility for the pace at which negotiations are being conducted, and will they apologise for the anxieties that patients are experiencing as a result? Secondly, what steps are Ministers taking to ensure that pharmaceutical companies will ensure that fair and responsible pricing for a deal can always be agreed when treatments are required on the NHS? Finally, will the Minister acknowledge the importance of finding a solution that guarantees we are never put in this position again for the future pipeline of treatments for cystic fibrosis and many other life-threatening conditions?

Credit Cards: Cost Regulation

Debate between Tulip Siddiq and Stella Creasy

Wednesday 7th February 2018 Westminster Hall

[Stella Creasy]

The hon. Gentleman prefigures much of what I will say about who I believe are the new Wongas in our society.

It is not possible to make the argument that the millions of people on zero-hours contracts and in temporary work can manage their repayments and can be confident about the amount of money coming into their households. With millions of people now self-employed, and more people in England likely to be employed in the gig economy than working for the NHS in a few short years, it is clear that insecure, precarious work and precarious finances are the new norm for millions of people in our country.

[Tulip Siddiq (Hampstead and Kilburn) (Lab)]

I thank my hon. Friend for securing this important debate. Many of my constituents rely on organisations such as Citizens Advice to support them when they are in dire credit card debt. At the West Hampstead Women’s Centre in my constituency, bespoke Citizens Advice surgeries often lead to referrals to specialist services, such as the face-to-face disability and debt service. However, since 2010, Citizens Advice has seen its funding slashed from £178 million a year to £99 million a year. Does my hon. Friend agree that, in addition to taking on credit card companies, we need to ensure that debt management services are protected as well?

[Stella Creasy]

I completely agree with my hon. Friend. The idea is that this is just a problem for a few hundred thousand people, but debt, worrying about debt and the causes of debt are mainstream concerns in this country. Debt management, debt advice and the work of Citizens Advice is very important, but I also believe that, when we see these problems growing again, there is a role for us to step in before they get any worse. I made a call to action several years ago about payday lenders. We did not listen then until it was too late. I hope the Government will listen now.

We know that not everybody is struggling, and that Britain is a nation of contrasts, where some people have seen their wealth balloon because of property and pension rights. However, we also know that there are too many for whom debt is just everyday life. It is debt on basic payments—on food, rent and travelling to work costs. We know that 25% of the UK population now struggles with debt. Not everybody is in trouble, but enough are, and the reason is the nature of the products they use to deal with their debt, particularly credit cards.

I hope the Minister will understand why we need to act, because credit cards are the acceptable face of modern debt for people. All of us have one; I am sure if Members were to open up their wallets and purses, they would have, if not one, then maybe two or three with them. There are 30 million cardholders in the United Kingdom. Indeed, the Financial Conduct Authority has been investigating the credit card market.

British Prisoners in Iran

Debate between Tulip Siddiq and Stella Creasy

Tuesday 18th July 2017 Westminster Hall

[Tulip Siddiq]

This is a matter of life and death, and we should be relying on any allies and friends we have in the region to try to get our prisoners of conscience released.

[Stella Creasy (Walthamstow) (Lab/Co-op)]

Does my hon. Friend think, therefore, that it might be useful for the Foreign Office to talk to Ministers in the Department for International Trade, who seem to be intent on developing a relationship with Iran? If they can speak about trade, perhaps we can talk about human rights.

[Tulip Siddiq]

Absolutely. My hon. Friend makes a good point, as usual. That is something I will be asking the Minister to address in his conclusion.

Secondly, given the seriousness with which the Government say they are treating Nazanin’s case, is it acceptable that the Foreign Secretary is yet to meet with her family? They are told that he raises concerns with Foreign Minister Zarif, but a meeting would reassure them of progress. Will the Minister help me to get a meeting between the families of those prisoners of conscience and the Foreign Secretary?

Thirdly, last year, Amnesty International produced a report on Iran’s prisons, which highlighted 17 cases in which

“The Iranian authorities are callously toying with the lives of political prisoners by denying them adequate medical care—putting them at risk of irreversible damage to their health or even death”.

Will the Minister therefore clarify the role of the 45 diplomats who recently went on a visit to Evin prison—the very prison in which Nazanin is being held—and were given a tour to show them how well prisoners are treated? That consular team, which is denied access to Nazanin and Kamal Foroughi because they are dual nationals, was sitting literally outside the cell in which Nazanin is being held, exchanging pleasantries, drinking refreshments and taking photos, and yet they did not help her. Did they ask to see her? If not, why not? Does the Minister agree that it is outrageous for our Government to take part in a public relations stunt, in which diplomats go to Evin prison and take pictures at the very location where human rights abuses are taking place? I would like the Minister to respond to that question. Will he ask for a full report from the embassy in Tehran, which was reinstated recently?

I would like to ask the Minister some broader policy questions, which my hon. Friend the Member for West Ham (Lyn Brown) raised, about the implications for those with dual nationalities. Nazanin has been denied justice at every turn during her 14-month ordeal, but she is not the only British dual national to be detained in Iran—Kamal Foroughi and Roya have already been mentioned. The treatment of British prisoners in Iran speaks to the need for a review of the Government’s broader policy towards dual nationals who are detained abroad. If we accept the status quo, we are accepting that the way Nazanin and Kamal are being treated is okay. That is not acceptable for many Members of this House.