Orkambi and Cystic Fibrosis

Debate between Oliver Letwin and Kerry McCarthy

Monday 19th March 2018 Westminster Hall

[Kerry McCarthy (Bristol East) (Lab)]

It is a pleasure to see you in the Chair, Mr Evans, and I hope that you received my note, saying that I would have to leave before the end of the debate—I am sorry about that.

As my hon. Friend the Member for Dudley North (Ian Austin) said, some of us very much hoped that we would not be back here making the case for Orkambi, because our being here again means that we still have not managed to persuade the Government and the National Institute for Health and Care Excellence to fund it. However, I have been absolutely overwhelmed by the fact that so many MPs have turned out today and that, as has been said, the petition gained the required 100,000 signatures within 10 days. That is phenomenal and I cannot believe that the Government will not listen to that outpouring of support.

Constituents have contacted me about their children, their grandchildren and their friends’ children—I had a lovely email from a family friend who has a little boy aged seven. I particularly want to pay tribute to Lee Partridge in Bristol for his work with the south-west parents cystic fibrosis support group. He lost his daughter Richelle in 2016 to cystic fibrosis, aged 26, and eight months later her sister Lauren died, aged 19, from the same illness. I cannot begin to imagine what that family has gone through, although I have a 13-year-old niece, Maisie, with cystic fibrosis, whom I have mentioned here before.

Maisie has been in pretty good health considering, but I have listened to Members talk about how people’s health can suddenly take a dramatic dip, with their lung function percentage going from somewhere in the 90s way down perhaps to 20, and I realise that I cannot be too optimistic. I can look at her today and say, “This is a happy, healthy child”. Apart from being hospitalised when she was first diagnosed at a few weeks old, she has had intravenous therapy only once, and that was almost a preventive measure because her lung function had dipped a little.

I have visited the children’s cystic fibrosis unit in Bristol and the adult treatment centre at Bristol Royal Infirmary, and many people spend their entire lives coming in and out of hospital, so we have been very lucky, but Maisie still has to have a cocktail of pills. When I spend time with her, her whole life is dominated by which pills she has to take. Every time she eats something she has to take her Creon. She has to have physiotherapy. She has also just been diagnosed with the very rare Wieacker-Wolff syndrome—we have suddenly discovered that one other child in the country has it. I thank the Government for supporting the deciphering developmental disorders study into 12,000 children and adults with undiagnosed conditions that has been carried out over the past couple of years, because it was only through that that we knew what was causing Maisie’s mobility problems and mild learning difficulties. The mobility problems obviously make it more difficult for the physio to be done and for her to be more independent.

[Sir Oliver Letwin (West Dorset) (Con)]

What the hon. Lady describes is a quality of life. Does she agree that, at root, what we are dealing with here is the problem that NICE measures the quality of life-adjusted years and does not measure improvements in quality of life of the kind she describes?

[Kerry McCarthy]

How do we measure the cost to the family? How do we measure Orkambi’s worth? To me, it would clearly be life changing, perhaps even life saving. When my hon. Friend the Member for Dudley North hosted his roundtable, it was reassuring to hear that Orkambi is another step forward—Kalydeco helps only 2% of people and we think that Orkambi could help 40%—and that drugs are in the pipeline, being worked on now, that may bring help to all cystic fibrosis patients in this country. It was said that it is too soon to judge whether the developments, rather than being just life-prolonging, could be life-saving, with cystic fibrosis being a condition that people live with, like diabetes, rather than one that people die from. Surely that is where we want to get to.

The overall picture is that getting one drug on the market is a stepping stone to further research, and it is about buying time, as the right hon. Member for Chingford and Woodford Green (Mr Duncan Smith) said. Maisie is now 13 and it is imperative that she get on such a drug if she turns out to be one of the children who can be helped, because, frankly, we do not have an awful lot of time before her condition might deteriorate. I cannot stress enough how important that is to us as a family. She obviously has hopes for the future. At the moment, she wants to star in musicals, which might be slightly over-ambitious. She has just got back from a horse-riding weekend in Wales.

I finish on that note of buying time. We do not have the luxury of time. We need to see action now from the Minister and we need to look at the overall cost to the health service and to the families. Maisie’s mother—my sister—is an absolute saint. She is a teaching assistant. She works with children with disabilities. She is a forest school leader. What she does in her daily life is wonderful, juggling that with a disabled child and two other children as well. If Maisie takes a turn for the worse, my sister will effectively be removed from the workforce and become a full-time carer. We ought to consider costs like that as well. Let us not look at it as a crude mathematical calculation but as what it means for people’s lives.

European Union (Withdrawal) Bill

Debate between Oliver Letwin and Kerry McCarthy

Committee: 2nd sitting: House of Commons
Wednesday 15th November 2017 Commons Chamber

[Sir Oliver Letwin]

May I explain what I have in mind? I am more than willing to give way to the hon. Gentleman again if he does not agree as I go along.

The first point about a better structure is that it does indeed need to have a statutory base, but that need not be in this Bill. In fact, I think it is much better that it should be an environment Bill, because an environment Bill gives the scope and opportunity to determine these things in much more detail and much more carefully, and gives the House, rather than what we have now—two and a half hours, not all of which will be spent on this topic—days and weeks of consideration in both Houses. That is the right way to do long-term environmental legislation.

[Kerry McCarthy]

The Environmental Audit Committee recommended, after its inquiry into the future of the natural environment post Brexit, that the Government bring forward an environmental protection Bill in order to do just what the right hon. Gentleman says, but there is no sign that the Government are prepared to do so. In the absence of such legislation, does he not think that the second-best option would be to protect the environment by supporting new clauses 60, 67 and 28, which are on the table today?

[Sir Oliver Letwin]

Well, we must leave it to Ministers to speak for themselves, but I have to say that the discussions that I and others had with the Secretary of State, who, as people have remarked in this debate, is of a very different cast of mind from some previous Secretaries of State, suggest to me that actually there will be an environmental protection Bill coming forward. I think that is—[Interruption.] Ah! Maestro! With perfect timing my right hon. Friend the Secretary of State comes into the Chamber, at just the right moment for him to signify with a nod, if nothing more, that the possibility of proper environmental legislation in the form of a new statute is on his mind.

--- Later in debate ---

[Kerry McCarthy]

My hon. Friend is quite right. It is about the removal of the cap on costs as well, and the fact that local people bringing these cases might find themselves liable to a huge financial burden if they are not successful.

Amendment 93 removes clause 4(1)(b), which restricts rights in clause 4 to those which are

“enforced, allowed and followed accordingly”.

Amendment 94 removes clause 4(2)(b), which excludes rights arising under EU directives that have not been adjudicated by the courts before exit day. There is no explanation as to why only rights that have been litigated on or enforced are carried over. The Minister may dispute this, but my interpretation is that the result will be that contentious aspects of law will be retained, but those that have never been litigated, perhaps because they are really obvious and incontrovertible and no one has seen the need to challenge them—the ones that everyone accepts—will be the ones at risk, which seems a little bizarre.

[Sir Oliver Letwin]

I have a great deal of sympathy with the hon. Lady’s amendment 93. I hope she would agree that it would be helpful if the Minister responded to her amendment and the points that my right hon. and learned Friend the Member for Beaconsfield (Mr Grieve) made by explaining what would be lost if paragraph (b), which is as clear as mud to many of us, were left out and paragraph (a), which is blissfully clear, were in place.

[Kerry McCarthy]

I can only invite the Minister to intervene on me at some point before I finish this speech and give a bit more clarity. I am glad that another superior intellect is as baffled as I was by that provision.

Amendment 95 adds wording that attempts to deal with the poor transposition of EU law, so that if retained law is found to have been incorrectly or incompletely transposed, there would be a statutory obligation on Ministers to make the necessary modifications to correct that. It says that until that piece of EU law is fully and correctly transposed, the EU directive itself can still be relied on. There are some clear examples of where we have not correctly transposed EU directives. For example, the Royal Society for the Protection of Birds points to article 10 of the birds directive in relation to the marine environment, which requires Governments to carry out research and other works to inform our efforts to protect wild birds. That goes back to what I was saying earlier—that it is not possible to enforce environmental protections properly without monitoring to ascertain the scale of the problem. The requirement to carry out research has not been transposed into domestic legislation, which means that, for instance, a new seabird census is long overdue. The Royal Society for the Protection of Birds was able to take that as a complaint to the European Commission, but there will clearly be a different scenario after Brexit.

New clause 28 concerns the enshrining of domestic principles in domestic law, which was referred to by my hon. Friend the Member for Greenwich and Woolwich (Matthew Pennycook) and with which I am sure my hon. Friend the Member for Wakefield (Mary Creagh) will deal shortly.

When the Government say that the Bill will ensure that the whole body of existing environmental law continues to have effect, that should mean not just specific substantive obligations but the broad and comprehensive framework in which those obligations are embedded, including the principles that underpin and aid the interpretation of environmental laws—such as the “polluter pays” principle, which states that those responsible for damaging our environment must pay, and the precautionary principle, which states that if there is a suspected risk that a policy could cause severe harm to public health or the environment, we should not proceed with it. Those principles are currently part of the body of EU environmental law in the treaty on the functioning of the European Union, and are also contained in a wide range of legal agreements to which the UK is party. They guide decision making, and provide a basis for legal challenge in court. Richard Benwell of the Wildfowl & Wetlands Trust has said:

“Take out principles like precaution and polluter pays and you rip the heart out of environmental law.”

NC28 would ensure that public authorities carrying out their duties must have regard to environmental principles that are currently enshrined in EU law. Schedule 1 states—the Minister touched on this—that

“There is no right of action in domestic law”

post-exit

“based on a failure to comply with”

EU “general principles”, other than those that have been litigated on by the European Court. That creates a problem. I should be grateful if the Minister could clarify another issue that was mentioned earlier by the hon. Member for North Down (Lady Hermon). “General principles” seem to specifically exclude environmental principles.

When the Environment Secretary gave evidence to the Environmental Audit Committee last week, he said that the principles could best be enshrined in UK law through guidance. Although we know that, in some cases, the precautionary principle has been enforced in the UK courts in relation to planning issues, that does not mean that it would apply more broadly than it does now. What we currently have is not simply guidance. For the principles to have equivalence on exit day, they must be placed in domestic legislation. Laws are binding, but guidance is only guidance. Public authorities must take it into account, but they need not follow it if it conflicts with other priorities.