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Cystic Fibrosis Sufferers

Volume 124: debated on Friday 18 December 1987

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Motion made, and Question proposed, That this House do now adjourn.— [Mr. Neubert.]

2.30 pm

In 1968, the Labour Government reintroduced prescription charges, but undertook to exempt as many of the chronically sick as could be readily identified. With the co-operation of the medical profession, a list of exempted illnesses was drawn up. The rules laid down were that such illnesses should be a permanent condition, and be clearly identifiable and require continual medication, in most cases by replacement therapy. There was, of course, exemption for children up to the age of 16 and for pensioners over 65.

There can be little doubt that had cystic fibrosis been considered in 1968 it would have been placed on the list of exempted illnesses. It was not considered, for the simple reason that in 1968 very few children with cystic fibrosis lived past the age of 16—that was the tragedy. Since then, the miracles of modern science have ensured that most cystic fibrosis sufferers, if diagnosed early, live well past the age of 16 and, it is hoped, live life with normal expectancy.

It is therefore in fairness to and concern for those afflicted that I raise the subject today. I ask my hon. Friend the Minister to ensure that a Conservative Government, who have shown more practical concern for the sick in our society than any Government in this nation's history, should soften their hitherto hard heart on this issue and add cystic fibrosis to the list of prescription-exempted illnesses. In that way, sufferers between the ages of 16 and 65 will be relieved of the additional problems of having to find the money to pay for their prescriptions.

This is the third time that I have raised this matter in Adjournment debates—I did so first in 1979 and again in 1985. The last time that I raised the matter I declared a general interest as an unofficial, unpaid parliamentary adviser to the Cystic Fibrosis Research Trust, which position I believe I still enjoy. I also declared a personal financial interest because I have a daughter—now aged 19½, but 16 in 1985 — who sadly suffers from cystic fibrosis. As she was and is a student, I would have benefited in the foreseeable future from the addition of cystic fibrosis to the list of exemptions. Unhappily, my daughter has since contracted diabetes — as almost 12 per cent. of cystic fibrosis sufferers do — and she is therefore eligible for free prescription charges because of that affliction. I now no longer have a personal financial interest to declare in accordance with the rules of the House.

Cystic fibrosis is a condition in which mucous glands secrete abnormal amounts of mucous. Two areas of the body are affected. The first is the digestive system, because the mucous clogs and restricts the flow of digestive enzymes and the pancreas does not function properly or does not function at all. Proteins and fats are not properly digested and the child does not flourish. The necessary treatment for that malfunction is an expensive, high-protein diet and a large quantity, in capsule and concentrated form, of powdered pigs' pancreas with every meal. My daughter used to take up to 10 capsules with each meal. They do the work that the human pancreas is unable to do.

The second area is the lungs. Abnormally thick mucous builds up in the bronchial tubes and seals in bacteria and viral infection, which if not cleared causes progressive deterioration leading to lung failure and often, alas, to death.

Treatment requires physiotherapy for about 20 minutes at least twice a day. Indeed, in some cases as long as 12 hours a day must be spent in physiotherapy. Intensive courses are necessary to clear the lungs of such children during school holidays to get them fit again for the start of the school term. In addition, the illness requires sufferers to take antibiotics, to use decoagulating atomisers and sometimes to sleep in mist tents at night.

Cystic fibrosis is a genetic illness that children inherit from their parents, who usually do not have the faintest idea that they are carriers of the gene and that they have a one in four chance of producing cystic fibrosis in their children. One in 20 of the population carry the defective gene and there is a one in 625 chance of carriers marrying. There are thought to be 5,600 sufferers today in the United Kingdom. That number increases at the rate of between 200 and 300 per year. There are 2,400 sufferers over the age of 16, and it is they who are covered by this debate.

When my daughter was born, cystic fibrosis usually killed children in the first year of their lives. Now, as a result of the wonderful work done by doctors, scientists, nurses and parents, most cystic fibrosis children reach adulthood in reasonably good health. Therefore, there is even more need for the medication to be made available on prescription than when I last asked the Government to do so two and a half years ago.

I should like to pay tribute to the Cystic Fibrosis Research Trust, which is the organisation representing sufferers of cystic fibrosis and their parents. That charity, which celebrates its silver jubilee in 1989, is adorned by the patronage of Her Royal Highness Princess Alexandra, the Hon. Mrs. Angus Ogilvy, and is dedicated to raising money to fund medical and scientific research projects into the causes, treatment and, hopefully, the cure of cystic fibrosis. There are currently about 45 projects in hospitals and universities all over the country.

The trust provides education, comfort and morale-boosting support to those whose suffering may, in some cases, be even greater than that of their cystic fibrosis children—the parents. With the trust's help, we are now close to discovering the faulty gene, which is why a cure may soon be possible. That was unthought of when I addressed the House on earlier occasions. The Cystic Fibrosis Research Trust is an outstanding example of how excellent work can be done to relieve disability without state aid.

The burden of care and responsibility falling upon parents, who sometimes have more than one cystic fibrosis child, to keep their children alive and enable them to enjoy as near normality in their lives as possible, is great. To relieve such parents and their children as they grow into adulthood of the additional worry of having to meet the relentless cost of prescription charges, even with the considerable help of the season ticket formula, which has been reduced to the present £35 per year, must be a highly desirable aim, which I am sure will claim the support of all hon. Members.

What would that cost? The Association of Cystic Fibrosis Adults estimates that about 800 adults pay prescription charges, at a total cost of about £51,000 a year. Therefore, the amount involved is peanuts and would be unlikely to cause the Chancellor one sleepless night. There can he positively no objection to the relief of that prescription charge on the grounds of cost.

Why, then, have the Government been so reluctant to help at least until now? When my hon. Friend the Member for Ealing, Acton (Sir G. Young) was Under-Secretary of State for Health and Social Security he gave some insight into the problem when he responded to my debate in October 1979.

He explained that the medical profession had to agree any decision. He said:
"Speaking as a layman I have a great deal of sympathy with the call to add cystic fibrosis to the list, and I would hope that the medical profession, if it were asked, would agree that it seems to satisfy the normal criteria for inclusion …
What I have had to ponder over is whether I should ask the doctors to add cystic fibrosis to the list and I have seriously considered doing so, as I personally think that if as many CF patients had survived to adulthood when the list was originally drawn up, that condition might well have been included."
My hon. Friend went on to explain why he would not immediately take the step for which I was asking. He said:
"If one advanced the boundary a little further to include cystic fibrosis, one would also in justice have to conduct a more general review of the whole scheme, and probably put in those who have phenylketonuria or coeliac disease. Therefore, one has to take a slightly broader view of the exemptions than my hon. Friend would like … If I seek to add this condition to the list, can I really defend not going further? Should not I consider whether the list of exempt conditions is the best way of helping the chronic sick, and is it right to go on trying to improve the list as my hon. Friend would wish in a rather piecemeal way, instead of seeking an alternative, within the resource constraints imposed by our present financial circumstances, to help more of the chronic sick?"
I agree. If we can help everybody, there is no point in worrying about helping a few.

My hon. Friend said:
"If I have decided to make no approach to the representatives of the medical profession at present it is because I feel that we must first see whether it is possible to work out some fairer way within our present financial constraints to help all the chronic sick with the costs of drugs they need than this present method of listing specified medical conditions."
But, said my hon. Friend—here a glimmer of light was offered to me—
"If we conclude that there is no better way than the present, I will return again to the request of my hon. Friend that we should consider, with the representatives of the medical profession, whether the list is fully up to date and whether there is a case for adding cystic fibrosis to it and perhaps some other similar conditions."—[Official Report, 25 October 1979; Vol. 972, c.688–91.]
I went away happy, or as happy as it was reasonably possible to be in the circumstances. If the Government could not see their way clear to helping everyone, they would look again to see whether cystic fibrosis sufferers at least could be further helped. Nothing happened. Did the Department conclude that there was "no better way than the present"? Did the Department return to consider cystic fibrosis? Did the representatives of the medical profession say no?

I raised the matter again on 24 May 1985 on the Adjournment. This time my hon. Friend and adversary was the new Under-Secretary of State for Health and Social Security, the hon. Member for Oxford, West and Abingdon (Mr. Patten). He was most sympathetic, and said:
"We all want to do what we can to help, but the case for free prescriptions for that group of people must be seen, I am afraid, within the wider context of the whole range of services provided by the NHS, the resources available, and the resources that exist to improve those services. I am well on the way to accepting my hon. and learned Friend's point that cystic fibrosis deserves very strong consideration. Alas, however, I am not at all convinced of the argument that it could be considered in isolation."
Yes, we had been over that ground. My hon. Friend the Member for Ealing, Acton had told us that he would find out whether everyone could be helped and, if not, would look again at the case for cystic fibrosis sufferers.

Had that happened? Apparently not. My hon. Friend the new Under-Secretary of State explained that the list was kept under review and added:
"it was last discussed with representatives of the medical profession as long ago as 1976, when cystic fibrosis was one of the conditions considered. But the General Medical Services Committee, representing the medical profession, did not at that stage come to an agreement over the addition of any conditions to the list."—[Official Report, 24 May 1985; Vol. 79, c. 1328–29.]
That was 1976—nothing had happened after my debate in October 1979. I had wasted my breath, and so had my hon. Friend the Minister.

I asked for the matter to be reconsidered, and I was told by my hon. Friend the Member for Oxford, West and Abingdon of the answer given by the Secretary of State on 11 March 1985, stating that the case for cystic fibrosis exemption would be looked at again, that the reexamination was taking place in the Department at that very time and that it was hoped that it would be completed before the end of the year. Was it? With what result?

Presumably, the answer was, "No, we cannot help everyone with a permanent illness because it would be too costly." Incidentally, how much would it cost? Presumably the answer was, "No, we cannot give special exemption to cystic fibrosis sufferers because that would be unfair to others." By now, the case for exempting cystic fibrosis sufferers must be as well known as it is undoubtedly compelling.

I shall briefly restate the case. Cystic fibrosis would have been on the exemption list if it had been considered in 1968. Ministers have agreed to that. Cystic fibrosis meets all the criteria for exemption. Ministers have agreed to that. The amount of money that it would cost the Government to extend the list to cover cystic fibrosis would be negligible. Ministers have agreed to that. There is no rule which states that smaller groups cannot be helped until the entire larger group can be helped, but the list of cases where the Government have helped to the extent that they are able is getting quite long.

We have exempted, for example, some old-age pensioners from having to pay the television licence fee if they live in warden-controlled accommodation. We have added to the list of drugs that doctors can prescribe on the NHS as the case for their inclusion has become more compelling. I could go on.

The case for adding cystic fibrosis to the list of exemptions gets stronger every year as the splendid doctors and researchers who, with the help of parents and the Cystic Fibrosis Research Trust, care for children with cystic fibrosis, bring them to adulthood and give them the prospect of a longer and normal life. They face the additional burden of a prescription charge which others in like circumstances simply do not have to pay.

As this is the very last debate before Christmas, and as the Minister who is to reply is my Member of Parliament, my friend and my much admired colleague who has done so much to relieve the plight of the sick since she has assumed her present office, I am more confident than ever before that my plea will not fall on deaf ears.

I wish you, Mr. Speaker, my hon. Friend, the servants of this great House of Commons and all my colleagues on both sides of the House a very happy Christmas and a healthier new year.

2.48 pm

I am grateful to my hon. Friend the Minister for allowing me to butt into 30 seconds of her time. I should like to say a few words of support for what my hon. and learned Friend the Member for Burton (Mr. Lawrence) has said.

I am fortunate in that I have no personal connection with anyone who suffers from cystic fibrosis although a small number of my constituents do. Apart from that, I have no interest to declare in the matter.

There is an extremely good case for extending the exemption to cystic fibrosis sufferers and I should like to re-emphasise the three main reasons. First, there is a genuine anomaly here, which has been caused since 1968, and purely on medical advance. Secondly, the cost to the Treasury of the Government doing something to alleviate the problem is extremely small—some £51,000 in a year. Thirdly, although it is difficult to make judgments in these matters, I think that there have been some exemptions in various areas of social policy which, if one took a hard look, one could say were less deserving than this in some ways.

My hon. and learned Friend the Member for Burton has stated the strong case for exemption being extended to cystic fibrosis sufferers lucidly and eloquently. I am grateful to my hon. Friend the Minister for allowing me a few moments and I hope that she will give strong and urgent consideration to the excellent case advanced by my hon. and learned Friend.

2.49 pm

The Parliamentary Under-Secretary of State for Health and Social Security
(Mrs. Edwina Currie)

First, I congratulate my hon. and learned Friend the Member for Burton (Mr. Lawrence) on his success in the ballot and welcome the support of my hon. Friend the Member for Thurrock (Mr. Janman) for my hon. and learned Friend in this debate.

Today we have an opportunity once again to raise the question of exemption from prescription charges for suffers of cystic fibrosis, as my hon. and learned Friend did in 1979 and 1985. I am following in honoured footsteps as I attempt to answer him, but I doubt whether I have any better news for him than had my predecessors, despite his kind personal remarks, which I appreciate.

My hon. and learned Friend rehearsed well the nature of cystic fibrosis, its causes as far as they are known and the daily difficulties facing any sufferer from the condition and family concerned.

About 250 affected children are born every year. About 70 per cent. survive until the age of 16, about half to the age of 30 and a few are now in their 40s. That leaves us at present with about 3,200 children and 2,400 adults in the United Kingdom. The commonest occurrence now appears in Scotland and the incidence of live births of cystic fibrosis children seems to be decreasing from about four per 10,000 live births in 1977 to 2·9 in 1984, which is the latest figure that I have.

My hon. and learned Friend drew attention to the increasingly successful treatments now available and I join him in paying tribute to the Cystic Fibrosis Research Trust. It is a model of its kind, uniting and assisting victims and their families, offering authoritative and well founded information and initiating research of the most productive nature. I understand that there is now an Association of Cystic Fibrosis Adults under its aegis, which was established earlier this year.

Between my hon. and learned Friend, my hon. Friend and me there is no need to rehearse the history of how it comes about that diabetics get free prescriptions, but cystic fibrosis sufferers do not. This is a new Parliament, so it may help other hon. Members if I set out the background of the discussions nearly 20 years ago when the then Labour Government discovered for the second time in their history that they could not manage without prescription charges. Indeed, in all the 40 years of the NHS, scripts have been free only for brief periods, first at the beginning and then in the mid-1960s.

When prescription charges were reintroduced in 1968, a list of specified medical conditions was drawn up as a means of exempting some of the chronically sick. We were told that such a scheme could operate only with the full co-operation of general medical practitioners. Their representatives made it clear that they could agree to exemptions only for readily identifiable medical conditions that called automatically for continuous, lifelong medication and, in most cases, for replacement therapy.

The comment of my hon. Friend the Member for Oxford, West and Abingdon (Mr. Patten) still stands. He said:
"A doctor would not wish to enter into a debate with a patient about whether his condition was severe or permanent enough to attract exemption. Yet such arguments would be inevitable if ill-defined or complex diseases were added to the list or conditions were added that were so variable in their prognosis or treatment that exemption would not always be justified. The doctor would have to make, and defend, difficult judgments between two patients at different stages of the same disease, and that could put at risk the important relationship between doctor and patient: a relationship where we tread rather delicately and tend to leave as much as possible, quite properly, to the medical profession's ethical views."—[Official Report, 24 May 1985; Vol. 79, c. 1330.]
On that occasion my hon. Friend reported that a review was under way, which was announced on 11 March 1985, and that review was concluded in 1986. I read the paper submitted to the Minister of State at the time and it took into account the large number of conditions which are no longer killers and which require lifetime medication. I suffer from one of them, asthma, and I shall depend on drug therapy for the rest of my life.

There is also a question of those with short-term terminal illness—the House will recall that the question was raised at the Conservative party conference some little while back — where an extensive range of expensive drugs may be needed, albeit for palliative treatment. As medical science advances the list will undoubtedly grow.

I agree entirely with my hon. and learned Friend that had children with cystic fibrosis been surviving beyond the age of 18 in large numbers 20 years ago, that disease would undoubtedly have been on the list in the first place.

Do either of the examples that my hon. Friend gave us involve replacement therapy, which is one of the fundamental conditions that is required, and which applies to cystic fibrosis?

If my hon. and learned Friend will listen to the points that I have to make, he may feel that we would no longer rely heavily on some of the points which were made 20 years ago to make our case.

I agree that, had survival been possible, this disease would probably have been on the list, but it was not put on the list. Two reviews since then have both concluded that no revision of the list should be made for cystic fibrosis or anything else. I know how deeply that will disappoint my hon. and learned Friend and his supporters, and I share his feelings, but having looked into the matter with some care, I come to the conclusion that my predecessors were not wrong.

The basis for exemptions for prescriptions is arbitrary and does not reflect current medical thinking. Nor does it parallel exemptions from dental charges, nor the rules for vouchers for spectacles, which are different again. I shall not begin to attempt to defend the rules and exemptions that we have now, but the principle to which we think it is wise to cling is that no one should be denied treatment or drugs on financial grounds. If a person or his family cannot pay, the prescription is free. That applies to all receivers of supplementary benefit or family income settlement, and indeed some others on low incomes. As a result, some three quarters of all prescriptions are issued free. After the social security reforms in April, those "passports" will continue, but we expect around twice as many families to qualify for family credit as for family income supplement than is the case at present. Therefore, the proportion of exempt subscriptions will probably increase.

We go a little further in this country and we encourage those on long-term medication to purchase pre-payment certificates. The charge for them is £35 a year, or 67p a week, or £12·50 for four months, which represents a significant saving for anyone requiring multiple prescriptions. The procedure for obtaining those exemption certificates at the moment is slow and fiddly. The Cheshire family practitioner committee has been telling me about its pioneering scheme for making the certificates available directly at pharmacists' premises. I have asked officials to look into the matter and advise whether we should change regulations for the whole country in that way. It would certainly help patients and be administratively simpler.

Of course, we do not expect people to pay the full cost of their drugs, except those for very mild conditions, which we took off the NHS list two years ago. The state recognises its responsibility in that important way. The flat rate charge of £2·40 covers, on average, only 45 per cent. of the cost of a typical prescription. In 1986, the latest year for which detailed figures are available, 322 million prescription items were dispensed in England, which is 22 million more than in 1980. We expect the figure to rise to 334 million this year. Of those, 246 million—that is, 76 per cent.—are exempt and 15 million—that is, 4·9 per cent.—are covered by pre-payment certificates, so there is almost certainly more scope for pre-payment certificates to be purchased.

It follows that only 60 million out of 322 million, or around 18 per cent., attract the charge at the time of dispensing. In 1968, when charges were reintroduced, only about 42 per cent. were dispensed free of charge. The total cost in 1986–87 of drugs in the Health Service was £1·8 billion, and that included dispensing costs. The charges raised £145 million or 8 per cent. I think that that will help to answer some of the questions that were put to me by my hon. and learned Friend.

My hon. and learned Friend who, as he says, is my constituent, is also a very dear friend. When I first arrived in the House in 1983, he offered me friendship and kindness, for which I shall be eternally grateful. My heart goes out to him and his family as he speaks of his personal experience of cystic fibrosis. Perhaps we are all lucky to be living in this country. My family in America suffered catastrophic financial consequences from the severe diabetes of my aunt whose needs rapidly outran all insurance cover. It took years to pay off all the medical bills.

Most of the other care and treatment that my hon. and learned Friend mentioned — the diagnosis, the physiotherapy, the support of the GP, the consultants, any necessary hospital treatment, and so on — are all provided without assessment or payment in this country. Indeed, over 92 per cent. of the cost of health care for all of us is provided by the state in Britain, and that is the highest proportion in the free world.

Perhaps I can comfort my hon. and learned Friend by saying that we all hope that in the years to come cystic fibrosis will be brought under control, as diabetes, epilepsy and asthma now largely have been, so that sufferers can lead normal lives, take their place as workers and taxpayers and look forward to old age. If the report in The Times of 30 November 1987 is anything to go by, I understand that
"Scientists at Celltech, the British biotechnology company have identified a naturally occurring enzyme which will be I he basis of a new drug to help sufferers of the condition."
The enzyme is called human gastric lipase, and if all goes well, the product will be generally available by 1994. However, we are some way off at present.

I hope that my hon. and learned Friend will permit me to offer him and his family, you, dear Mr. Speaker, and all those here who are still listening, the compliments of the season and a very happy new year.

Before I adjourn the House, I should echo the remarks of the Under-Secretary of State and wish all hon. Members and the staff of the House, who serve us so faithfully and well, a very happy Christmas.

Question put and agreed to.

Adjourned accordingly at Three o'clock, till Monday 11 January 1988, pursuant to the Resolution of the House of 8 December.