Cystic Fibrosis (Exemption from Prescription Charges) Bill

Orders of the Day – in the House of Commons at 1:45 pm on 23rd March 2007.

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Order for Second Reading read.

Photo of John Hayes John Hayes Shadow Minister (14-19 Reform and Apprenticeships) 2:08 pm, 23rd March 2007

I beg to move, That the Bill be now read a Second time.

When Members get drawn in the private Members' ballot, a dilemma becomes apparent: should we grandstand on a controversial issue that is bound to attract notice—something spicy and irresistible to press and public, a Bill that embodies contentious sentiments that the promoter believes are vital and essential to the whole nation's future, but nevertheless would have no chance whatever of becoming law—or should we opt for a modest, sensible measure that will not make us famous but might have a real chance of moving hearts and minds in the House, thereby changing public policy?

Despite suffering from the burning temptation that afflicts all who believe that they alone know the solution to the problem of the meaning of life of opting for the first type of Bill, I opted for the second—recalling, as F. D. Roosevelt said, that the "true conservative" is

"the man who has a real concern for injustices".

It is thus with great pride and faith in the reason and fairness of my parliamentary colleagues of all parties that I present this Bill to exempt cystic fibrosis sufferers from prescription charges.

This short, straightforward Bill aims to correct an anomaly—to right a wrong. I will explain why and how, and talk a little about the context, in five points. First, in 1968, the British Medical Association drew up a list of conditions that would thereafter be exempt from prescription charges. They were defined as those

"readily identifiable conditions, which in virtually all cases call automatically for prolonged continuous medication."

At that time, the vast majority of cystic fibrosis sufferers died in infancy, and the condition was left off the list because then, as now, children were exempt from prescription charges.

Secondly, medical advances have, fortunately, meant that the outlook for sufferers has improved markedly over the past few decades. Average life expectancy is now 31 years, but while times have changed for those affected, the conditions that are exempt from prescription charges remain stuck in a 1968 time warp. Adults with cystic fibrosis are therefore still obliged to pay prescription charges.

My third point is that these are typically people whose education and employment prospects have been profoundly disadvantaged by their ill health. Many are in low income brackets and struggle to make ends meet while coping with a degenerative condition. On top of that, they have to contend with making extra payments for which, according to the British Medical Association's own criteria, they simply should not be liable.

Fourthly, this anomaly has been recognised for some time by people across the House. It is not a partisan issue. Indeed, my attempt to put it right has received support from Members across parties. Before they came to power in 1997, those who are now in government specifically pledged to deal with this injustice, if enabled by office to do so. Hon. Members will no doubt remember that, in 1994, the Labour party—then in opposition—drew up a paper making exactly the case that I am repeating today. Two years ago, my former colleague, Archie Norman, then the Member for Tunbridge Wells, raised the matter, as I have done, through a private Member's Bill. Sadly, parliamentary time constraints meant that it fell at the first hurdle. I first revived the issue at Prime Minister's questions last July, when I was assured that the Government were reviewing the matter within existing NHS budget constraints. It is no surprise, therefore, that when I was drawn in the ballot for private Members' Bills, I decided to use the opportunity to raise the matter again.

My fifth point concerns the surprisingly small cost of including cystic fibrosis on the exempt list. Of the 7,500 people in the United Kingdom with cystic fibrosis, about half are aged 16 or over. Roughly a third of those are in higher education, while another third are too ill to work and are in receipt of benefits. That leaves just around a third of the adult sufferers—about 1,250 people—paying prescription charges. Most pay by annual season ticket, which involves the prepayment of £95.30 for a year. This means that the total cost of including cystic fibrosis patients on the exempt list would be less than £120,000 a year. That could certainly be accomplished within the range of the review that the Government are conducting, which assumes that existing NHS budgets would not be exceeded.

I can tell, however, that questions will be fermenting in the minds of Ministers and perhaps even shadow Ministers: "Why this condition alone? Are not others equally worthy of such an exemption?" The answer is that, unlike some other conditions, cystic fibrosis meets exactly the exemption criteria laid out by the British Medical Association in 1968. It is readily identifiable, and virtually all cases call automatically for prolonged continuous medication.

Photo of Kerry McCarthy Kerry McCarthy Labour, Bristol East

I congratulate the hon. Gentleman on taking the opportunity to raise this issue in the House. I have a young niece with cystic fibrosis, so I am very aware of the hardships, financial and otherwise, accompanying the condition. Is he aware that, according to the Cystic Fibrosis Trust, a child born today with cystic fibrosis can expect to live into their late 40s, as opposed to the average age of 31 that he mentioned? That emphasises his point about the condition requiring treatment over a long time.

Photo of John Hayes John Hayes Shadow Minister (14-19 Reform and Apprenticeships)

That is a good point, and I am grateful to the hon. Lady for mentioning the Cystic Fibrosis Trust, which, along with the British Lung Foundation, has greatly assisted me in bringing these matters to the House's attention. The point to which she draws attention is a double-edged sword, because as people live longer, the demand on the Exchequer might be deemed to be greater. It is very good news for sufferers, however, and as medical advance is dynamic rather than static by definition, the kind of treatment that we can provide might become cheaper and more readily available, and might even lead to a cure. Therefore, when we consider the changing circumstances, we should not automatically assume ever greater costs. Nevertheless, the hon. Lady makes a useful additional remark, which I hope will aid my case.

As I said, there is more than one reason why cystic fibrosis should attract our concern and assistance. It is not only easy to identify but particularly easy to compartmentalise, whereas some of the other conditions vying for a place on the exempt list—and I do not for a moment make light of them—are harder to put into a compartment. Congenital heart disease, for example, is a complex condition covering a range of medical problems, and would be hard to identify so precisely. An undue burden would be placed on those with authority over such matters, as they would be uncertain about the scope of the cost of dealing with such a condition. As the Minister—who has much greater expertise than I have—knows, a number of other conditions are, similarly, much harder to identify clearly and precisely than cystic fibrosis.

The other reason the condition demands such attention is that exempting it from prescription charges is affordable within existing budgets. The estimated sum of less than £200,000 is surely achievable within an NHS annual drugs budget of nearly £7 billion. As I have said, the Government's review currently assumes no additional expenditure, which, incidentally, is an assumption reflected in the Bill.

Members might wonder why I have taken this matter to my heart. In part, I have done so because a close friend died a couple of years ago from the repercussions of acute fibrosis, and her experience of many years of illness encouraged me to take an interest in the issue, to learn more about it, and to seize the opportunity afforded to those privileged enough to be Members of Parliament to advance the cause.

With your infinite wisdom and long experience, Mr. Deputy Speaker, you know that the House sometimes makes mistakes. More often, however, it comes to the right conclusion in the end, as we were reminded this week when we debated the bicentenary of William Wilberforce's campaign to abolish the slave trade. Against the odds, Wilberforce fought to make a difference and for social justice. He fought a long campaign on a great issue. My campaign is small, straightforward and humble. To the people affected, however, it would make an enormous difference. Another great Tory, Benjamin Disraeli, said that justice is truth in action. The truth is that Governments sometimes make mistakes too, but they also sometimes take action to make things right. That has much less to do with party than with the nature of fallen men and women's innate frailty and habitual endeavour to improve.

Today, let us put this matter right by recognising the simple truth of the case and so take action on behalf of a group of long-suffering, vulnerable and deserving people. I hope that the Government will back the Bill, but if for whatever reason the Minister cannot manage to do so today, I hope that that will not be the end of the matter. I hope that in the course of their review the Government will take further advice and receive representations. If the Bill does not sail through Parliament as I expect it to, I shall be happy to make my own small contribution to any further consideration in the coming days, weeks and months.

I am grateful to you, Mr. Deputy Speaker, and to the House for its indulgence in allowing me to make my case on behalf of sufferers from cystic fibrosis.

Photo of Meg Hillier Meg Hillier PPS (Rt Hon Ruth Kelly, Secretary of State), Department for Communities and Local Government 2:20 pm, 23rd March 2007

I will be brief, as time is short.

I congratulate Mr. Hayes not just on raising this important issue but on an eloquent and passionate speech that said all that needs to be said on behalf of people suffering from cystic fibrosis. The debate has also highlighted the way in which we spend health service funds.

As the hon. Gentleman said, the original exemptions list was drawn up in 1968. When it was last reviewed in 1998, cystic fibrosis was not added to it. It is not entirely clear to me why that is; the hon. Gentleman might wish to intervene to explain. It might be partly because of progress in medical research, as he suggested. As he said, when the list was first drawn up most sufferers did not survive beyond the age of 16, but now they are living longer. My neighbour's daughter died of cystic fibrosis at the age of about 30.

Photo of John Hayes John Hayes Shadow Minister (14-19 Reform and Apprenticeships)

I am grateful to the hon. Lady, of whom I am an immense admirer. That will blight her career if nothing else does!

I have discussed the review informally with Ministers. The truth is that throughout consideration of the list, different conditions have been vying for a place on it. Because of the dynamic nature of those conditions and their treatment, it has always been very difficult for Ministers of any political party to make a judgment about what should and should not be on the list. I do not deny that the issue is complex, and I do not suggest that this is a black-and-white case, but I think that cystic fibrosis stands out as a condition that is definable and whose treatment is affordable.

Photo of Meg Hillier Meg Hillier PPS (Rt Hon Ruth Kelly, Secretary of State), Department for Communities and Local Government

I thank the hon. Gentleman for his intervention, but I think that the lack of consensus is a problem. I support much of what he said, and I would naturally support the idea of free prescriptions for cystic fibrosis sufferers; however, I also represent people with many other conditions. I fear that if we pass a private Member's Bill dealing with one condition, we will see a rash of private Members' Bills dealing with many other conditions, and there will be no coherence in the system. However difficult it may be, I believe that we should have the capacity, in Government and in Parliament, to achieve a broad consensus that produces a better result across the board rather than just for one group.

I support much of what the hon. Gentleman has said and I wish the Bill well, but I wonder whether it is the best vehicle for achieving what he wants. I echo his comments to the Minister about the review that the Government are undertaking. I agree that it should take a proper, robust look at this issue, but I do not think that that should involve endless delay. We have waited long enough for the issue to be dealt with one way or another. I also think that the review should look closely at the parameters of any exemption, so that exemptions are about the condition—cystic fibrosis, or any other condition—and not about medical or drug needs that might arise for other reasons. Otherwise, the system could be open to abuse.

May I ask the Minister what consideration the Government have given recently to exempting cystic fibrosis, whether any consideration has been given to any other long-terms conditions, and what representations she has had from other groups? If she is not willing to exempt cystic fibrosis, what action might the Department of Health take to deal with the anomalies in general? Perhaps she could also comment on the cost element that the hon. Gentleman raised.

Time is short, so I will end my speech here. I congratulate the hon. Gentleman again on raising this important subject.

Photo of Rosie Winterton Rosie Winterton The Minister of State, Department of Health 2:24 pm, 23rd March 2007

I congratulate Mr. Hayes on his success in the private Members' ballot and on drawing the issue under discussion to the attention of the House. I also thank my hon. Friends the Members for Bristol, East (Kerry McCarthy) and for Hackney, South and Shoreditch (Meg Hillier) for their contributions.

The hon. Gentleman made some important points, and all the contributions have reflected the difficulties involved in this issue. The hon. Gentleman is right that cystic fibrosis is the most common inheritable disorder in the country; it affects about 7,500 children and adults. However, it is also true that there have been considerable improvements in the care of, and services for, people with cystic fibrosis. It is marvellous that 75 per cent. of sufferers now survive into adulthood. Two decades ago, only 12 per cent. of affected children survived into adolescence. That increased survival rate is the result of improvements in treatment, better care and the work of certain organisations—I join all Members in paying tribute to the Cystic Fibrosis Trust, which has done much to draw attention to its cause.

Photo of Kerry McCarthy Kerry McCarthy Labour, Bristol East

Is the Minister aware that the CFT is currently conducting a survey of regional variations in treatment across the country, as it appears that there are some postcode variations in the treatment people receive? Will she support calls for a national service framework for cystic fibrosis treatment?

Photo of Rosie Winterton Rosie Winterton The Minister of State, Department of Health

A number of national service frameworks could have an effect on the treatment of cystic fibrosis, but as part of that treatment we wish to help people to manage their conditions. That is an important part of the work that we are currently doing, especially in terms of ensuring that people take medication, and that they understand what can worsen the condition and how to alleviate some of the symptoms.

I wish briefly to talk about the 1998 review of prescription charges as that will highlight some of the difficulties that we face in the review that we are currently carrying out.

Photo of John Hayes John Hayes Shadow Minister (14-19 Reform and Apprenticeships)

When does the Minister anticipate that the current review will be concluded?

Photo of Rosie Winterton Rosie Winterton The Minister of State, Department of Health

We anticipate that it will be concluded in the summer of this year, and I should emphasise that we would welcome any comments from organisations or MPs on possible options for changing the current prescription charge arrangements. Once we have submitted the review to Parliament, we will look at what steps need to be taken next.

The review will address in particular whether we should revise the list of medical exemptions to prescription charges. The hon. Gentleman and my hon. Friends rightly pointed out that MPs—and Ministers, of course—receive many representations from people on this matter. Some of them are about congenital heart disease, which the hon. Gentleman mentioned. There is also now an issue in that people are living longer and longer with diseases—such as cancer—and that they have to continue taking drugs throughout their lives. Cancer has become a long-term condition for some people. We want to receive representations on such matters. That is why it is important to ensure that we consider these matters in the light of the review, as opposed to picking out one particular condition and saying that we would change the policy beforehand, and not consider it alongside all other demands—

It being half-past Two o'clock, the debate stood adjourned.

Debate to be resumed on Friday 19 October.