Hepatitis C

– in the House of Commons at 10:27 pm on 22nd October 2002.

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

Photo of Richard Spring Richard Spring Conservative, West Suffolk 10:28 pm, 22nd October 2002

May I thank you personally, Mr. Speaker, for giving me the opportunity of introducing this debate, and the Minister for being here to reply.

I would like to bring the Minister's attention to something about which there has already been correspondence with the Department of Health, namely the case of my constituent, Dominique Porché, who suffers from hepatitis C and for whom all avenues of compensation appear to have closed, most unjustly.

Before discussing the circumstances surrounding my constituent's case, I would like to talk about the condition of hepatitis C itself.

The Campaign for Effective and Rational Treatment estimates that there are between 300,000 and 500,000 hepatitis C, or HCV, cases in this country. By way of tribute to the Haemophilia Society, I should add that about 2,800 haemophiliacs also have HCV and the society has produced a well thought-out compensation package for consideration.

I shall outline what we are dealing with medically. Hepatitis C is a disease characterised by inflammation of the liver, usually producing swelling and, in many cases, permanent damage to liver tissue. It is a contagious, viral disease that can lead to serious permanent liver damage. The identification of the specific hepatitis C virus in 1989 solved a mystery: over the previous 10 years, large numbers of hepatitis victims began to appear, but when examined those patients tested negative for both hepatitis A and B. In 1990, when a test was developed to identify individuals infected with a hepatitis variant, hepatitis C was found to be responsible for the majority of cases.

In contrast with most other types of hepatitis, the majority of HCV infections lead to liver disease. Hepatitis C, in combination with hepatitis B, accounts for 75 per cent. of all cases of liver disease throughout the world. As HCV infection is typically mild in its early stages, it is rarely diagnosed and is often not recognised until it has progressed.

The virus mutates frequently. Once an infection has begun, hepatitis C creates different genetic variations of itself within the body. The mutated forms are frequently different enough from their ancestors that the immune system cannot recognise them. Thus, even if the immune system begins to succeed against one variation, the mutant strains can take over and become new predominant strains. As a result, the antibodies developed against hepatitis C do not produce an immunity against the disease, as would be the case with most other viruses.

I turn to the case of my constituent Dominique Porché who, despite his infection, has dealt with his illness in an enormously robust and positive way. I have come to admire his resilience, patience and good humour in adversity.

In 1998, he contracted hepatitis C from blood transfusions given during operations at Addenbrooke's hospital in Cambridge. In September 1991, routine testing for blood transfusions was brought in. It is unclear exactly when the National Blood Authority may have become aware of the likelihood of my constituent's infection. In any event, he was not informed of that possibility for a further five years.

In 1996, he was informed by the National Blood Authority, via his GP, Dr. Bateman, that he had been identified as infected. That flowed from the Department of Health's national hepatitis C look-back exercise. My constituent said:

XI was in such shock, confused and very worried. I did not know what to do about this horrifying news."

In a letter from the consultant in transfusion medicine based at the East Anglian blood centre in Cambridge, my constituent was offered assistance to try to understand the implications of his infection. Disgracefully, there was not even an allusion to compensation.

In April 2001, more than 12 years since my constituent underwent surgery, he happened to be watching a television programme and became aware of possible compensation claims. At no stage had he been informed either by Addenbrooke's hospital, the National Blood Authority or any other arm of the national health service of his right to pursue such a claim.

I shall also mention the case of another constituent—Mrs. Angela Woodley of Haverhill. Although her case is different in some respects from that of Dominique Porché, there are similarities in that she contracted the disease at Addenbrooke's hospital from blood transfusions in the 1980s. Mrs. Woodley was receiving treatment for cancer at the time. Her situation represents another tragic story and she is still fighting for compensation. She recently observed to me:

XIt seems nobody wants to know. You never know when it will hit and nobody ever talks about it. The horrific truth is that there are hundreds of people that contracted this disease the same way as I did. How many have to die before this Government takes notice?"

The Minister will of course be aware of section 32(4)(a) of the Consumer Protection Act 1987, which overrides normal provisions concerning the deliberate concealment of facts. That means that even if it were proved that the National Blood Authority knew about the likelihood of infection sometime around 1991, there would be no way of extracting such evidence.

Indeed, in a letter to me dated 25 January, the then Under-Secretary of State, Yvette Cooper, detailed the legal underpinnings of the so-called 10-year rule:

XIt should have been made clear that the ten-year ruling means that any legal proceeding needs to have been initiated with a solicitor within ten years of the injury or infection. The Consumer Protection Act 1987 is based on the European directive 85/374/EEC on the liability for defective products. This states in Article 11 that 'Member States shall provide in their legislation that the rights conferred upon the injured person pursuant to this Directive shall be extinguished upon the expiry of a period of 10 years from the date on which the producer put into circulation the actual product which caused the damage, unless the injured person has in the meantime instituted proceedings against the producer'."

In the circumstances surrounding the case of Dominique Porché, the cry has to be, XWhere is natural justice?" There was a clear dereliction of duty on the part of different NHS personnel not to tell him his rights. When he brought the matter to my attention, I obviously got into correspondence with both Addenbrooke's hospital and the then Suffolk health authority. In a letter to me dated 8 February 2002, the Administrative Director of Addenbrooke's hospital wrote with almost heroic understatement:

XWithout making any commitment on behalf of the Trust, I do have to agree that it seems that this chap has received a rather poor deal and I will have a further look into the way in which his case has been handled here to see if there is anything at all that we can do to help."

It has been pointed out to me that the Consumer Protection Act 1987 is draconian in respect of limitations of actions. Schedule 1 of the Act introduced section 11A into the Limitation Act 1980. It provides for a 10-year long stop on actions for breach of statutory duty. At the end of 10 years the right of action is extinguished. There is no discretion to disapply the 10-year long-stop rule and no provision for extension in respect of late knowledge of a potential action.

Similarly, in a letter sent to Dominique Porché written at my instigation, the Chief Executive of the Norfolk, Suffolk and Cambridgeshire health authority, Peter Houghton, wrote:

XI refer to your letter of 4th February to Jane Rutherford at Suffolk Health Authority...I have discussed the issues you have raised with Jane Rutherford. Jane has taken, on your behalf, advice from the NHS Litigation Authority, which has been dealing with the Hepatitis C Litigation. Whilst both the NHSLA and the Health Authority wish to extend their deepest sympathy to you in view of the situation in which you find yourself, neither body is authorised to offer patients compensation by way of an ex-gratia payment, or where they have failed the litigation process."

So we have reached a dead end, but it is scandalous that that should be the case. Of course there has to be a time limit on litigation, and of course litigation cannot be open-ended in the pursuit of a compensation claim; but how on earth can an individual know of his rights when no one in authority tells him?

Dominique Porché is a self-employed painter and decorator. He has a young son and his wife is expecting another baby. Obviously, he worries about their future in the event of his condition deteriorating. I personally feel deeply committed to supporting him and to trying to secure him some compensation for the tragedy that has cast such a blanket of anxiety over his life.

Let me tell the Minister that I shall not allow this issue to be pushed under the carpet after this debate. Compensation arrangements have been made in many other countries—Ireland, Spain, Hungary, Sweden, Canada, Italy and Norway, among others. The Minister will note the absence of the United Kingdom from that list.

British citizens are entitled to clean blood, as Mr. Justice Burton ruled in the case of S and others v. the National Blood Transfusion Service and others last year. However, in practice, that right is not recognised in this country, as it does not extend to individuals, such as Dominique Porché, who are also seeking compensation.

In my view, the moral argument is transparently obvious and powerful. I hope that the Minister will accept that Dominique Porché has been treated shabbily and unsympathetically because of inflexibility of the system. That really is not fair; it is simply not good enough.

Photo of Hazel Blears Hazel Blears Parliamentary Under-Secretary (Department of Health) 10:41 pm, 22nd October 2002

I thank Mr. Spring for raising this very important issue. Like him, I should like to say a little about hepatitis C before coming to the individual circumstances of his constituent.

Hepatitis C is recognised as a global public health problem. The World Health Organisation estimates that there are about 170 million people with chronic hepatitis C infection worldwide. The prevalence of hepatitis C infection varies in different countries. Studies suggest that we in England have a relatively low prevalence of hepatitis C compared with many other countries. The best estimate is that probably about 200,000 people in this country, or 0.4 per cent. of the general population, are likely to have been infected and to have become chronic carriers of hepatitis C.

Although that is a low prevalence of hepatitis C, it is nearly ten times the estimated figure for those infected with HIV, which shows that it is quite a significant problem for us. However, unlike HIV, we have a drug treatment that can clear the hepatitis C virus in many of those infected, but we obviously recognise that there is no room for complacency. The drug treatment does not work for everyone, but there is a little more hope for those with hepatitis C than for those infected with HIV.

In most cases, hepatitis C is spread by contact with the blood of someone who is infected. The main groups at risk of infection are injecting drug users and those who received blood transfusions or blood products before screening and viral inactivation processes were introduced.

People with chronic hepatitis C infection may remain virtually symptomless for many years, and a large number of people will live out their life in the normal way. However, some people may suffer more general debilitating effects, which can affect their quality of life. In a proportion of cases, the liver may become progressively inflamed and damaged. If not treated, that may eventually develop over a number of years into cirrhosis, or occasionally liver cancer. So the disease has some very serious consequences indeed for those people who are not susceptible to the latest drug treatments and for whom the disease progresses to its end stages.

Two groups of people contracted hepatitis C through blood—the issue that the hon. Gentleman raises. The first group includes about 3,000 haemophilia patients treated with clotting factors before 1985. That is an important date, because it was only in that year that it became possible to remove viruses from pooled blood products by using heat treatment. However, the hon. Gentleman's constituent falls into the second group of people: blood transfusion recipients who contracted the virus before September 1991, the month in which the United Kingdom first introduced blood testing for hepatitis C.

About 700 such people, including the hon. Gentleman's constituent, Mr. Porché, were identified through a look-back study conducted by the National Blood Service from 1995, but it is likely that it has been impossible to trace many hundreds of others, even through that look-back study, who may be in a similar position.

The reason why people were still being infected with hepatitis C as a result of blood transfusions as late as 1991 requires some explanation. Unlike pooled blood products that can be heat treated, the red cells for transfusions cannot be treated to remove viruses. The only way to remove viruses from transfused blood is to screen out the infected donors. So there is no treatment of the blood itself that can be carried out. The hepatitis C virus was firmly identified only in 1989. The first screening test for hepatitis C for donors was marketed later that year. It was very experimental at that stage. The United States was one of the first countries to introduce hepatitis C testing in May 1990. The UK began screening blood for hepatitis C in September 1991, using a far more reliable second-generation test. These dates are crucial when considering people's entitlement to compensation. A key issue is whether the national health service was in possession of the scientific knowledge to enable it to carry out the processes at the time.

I move on to compensation. Haemophiliacs infected with hepatitis C have been campaigning for compensation for a number of years. They have put forward a proposal for a scheme that amounts to about #500 million over 10 years. That was submitted early this year by the Haemophilia Society. We are currently giving the proposal our detailed consideration. There has also been a call for financial assistance in Scotland for all people infected with hepatitis C through blood. That has been discussed by the Scottish Parliament Health and Community Care Committee. The Scottish Executive is currently considering its response to that.

The Government have listened carefully to all the arguments in favour of a compensation scheme. I am aware of the personal tragedy that is caused to those who find themselves in these circumstances. However, the fact remains that in the NHS compensation is usually given only when either the NHS or those working in it have been at fault. That is where there has been some negligence and the damage can be attributed to it. That is not the case with hepatitis C infection. We therefore do not believe that an exception can be made to the general rule in the case of people infected with hepatitis C. The same conclusion was reached by the previous Government. They examined the issue in the mid-1990s and decided that it was not possible to depart from the general principle.

As the hon. Gentleman has said, a number of blood transfusion recipients with hepatitis C were successful in winning damages in the High Court through a judgment in March 2001. It was a landmark judgment made under the Consumer Protection Act 1987. Those who were awarded damages were infected between March 1988, the date when the Act came into force, and the start of screening for hepatitis C in September 1991. The hon. Gentleman will appreciate that that is quite a small window of the people who were infected between the date that the legislation, which is strict product liability legislation, came into force and the date when it could reasonably be held that the NHS should have, and did, introduce screening of blood donors. Those people who fell into that category were entitled to compensation.

The Consumer Protection Act implements the 1985 European directive on product liability. As I have said, it is a piece of strict liability legislation. That means that there is no requirement of proof of fault, unlike the ordinary law of negligence. It is about defective products. The judge ruled that hepatitis C-infected blood was a defective product and that, irrespective of fault, there was product liability. That is why it appears that the claimants who fell within the window to which I have referred were treated differently in that they received compensation. There is a good legal reason why they became eligible for compensation.

The outcome of the case does not alter our position on the general rules of compensation. Damages were awarded on a no-fault basis, and at present we do not have such a basis of compensation. Although Governments have occasionally made ex-gracia payments to patients—for example, in the case of haemophiliacs with HIV and the families of people with variant CJD—these have been in truly exceptional circumstances that do not apply to hepatitis C. When HIV first emerged as a disease, it was almost undoubtedly the case that people would die quickly in dreadful circumstances as a result. Even to date there is no accepted treatment as there is in the case of some of those suffering from hepatitis C.

My understanding is that the hon. Gentleman's constituent was infected after the Consumer Protection Act came into force, but he was not part of the group action and is now barred from seeking damages under the limitation period in the Act. It contains a provision stating that legal proceedings must be initiated with a solicitor within 10 years of the infection. I entirely understand the frustration felt by anyone who has missed out on an opportunity to take legal action for damages. The hon. Gentleman's constituent is not the only person in that position of whom we are aware, but it would set a most unfortunate precedent in other litigation where there are Xtime bars" if the Government were to accept that as a reason for awarding financial compensation, because it would be entirely outwith the legal framework that applies to our decision making in such matters. I recognise how hard that seems to individuals facing difficulties or family tragedies, but it is important that we maintain the integrity of the system and the rules by which we are bound.

The hon. Gentleman made two points to which I want to respond. The first is that his constituent, Mr. Porché, was not informed of his infection until 1996, five years after the start of screening. That requires an explanation. Secondly, Mr. Porché says that once he had been told of his infection, NHS personnel were derelict in their duty by not informing him of the opportunity to take legal action and become part of the litigation that was brought.

As I mentioned earlier, the NHS began a look-back exercise in 1995 to trace, counsel and, if necessary, treat people who had been infected with hepatitis C through blood transfusions. That was announced in the House by Mr. Tom Sackville, who was the Minister responsible at the time, on 11 January 1995, and guidance was issued to the NHS in April that year. I have managed to obtain a copy of the press release issued in 1995 by Mr. Sackville. In it, Dr. Jeremy Metters, the chairman of the advisory committee and the Government's deputy chief medical officer at the time, explained the reason for the delay:

XUntil recently there was no treatment to offer those who might be identified and it was believed that this exercise would have been technically very difficult. However, following a pilot research study procedures have been established which make it possible to trace those at risk and, more importantly, certain drugs have recently been licensed which may be suitable for the treatment of some of those involved. This look-back programme will go ahead without delay."

That is the explanation for the time that elapsed between the infections and the look-back exercise: no treatment was available and there were technical barriers to the exercise. However, once they had the means, they got on with the action.

As for whether Mr. Porché should have been told about the opportunity to claim damages, I am not sure of exactly when he was in contact with NHS officials; however, it may be that at that time the litigation had not started, or it was in its infancy, or people were not certain of the validity of the claim. The Act on which it was based was relatively new, and the judgment was not issued until 2001. If the hon. Gentleman gives me full details of Mr. Porché's contacts with NHS personnel, I shall certainly look into the matter, but it may well be that the litigation had only just started to be contemplated and was therefore not a significant feature in the mind of the NHS at that stage.

The hon. Gentleman described how his constituent is, naturally, worried about his future and that of his family, and what would happen if his condition were to worsen and perhaps prove resistant to the drug treatments available. Many people with hepatitis C have had difficulties in obtaining insurance. It is, sadly, inevitable that policies and premiums offered by insurers will reflect health factors, but I understand that the Association of British Insurers has told us that applicants who are infected with hepatitis C should not automatically face increased premiums or refusal of cover.

Many people with hepatitis C will live out their normal life span and not progress to serious liver disease, but some may do so. There will therefore be a range of outcomes for insurance applications from people with hepatitis C, depending on the individual case. Those will range from standard rates to a small weighting, through to a greater weighting or, in serious cases, refusal of cover.

I know that Scottish Ministers have been working with the Association of British Insurers and the Council of Mortgage Lenders on the issue. I am happy to consider a joint meeting with my Scottish colleagues to see whether we can take matters forward and give people some reassurance about their access to finance in the future.

I shall finish by mentioning some of the steps that the Government are taking to ensure that we get effective prevention, testing and treatment services for people who have hepatitis C. Treatment has improved markedly in recent years. The National Institute for Clinical Excellence assessed the drug combination therapy of ribavirin and interferon for treating hepatitis C and published its recommendations in October 2000. The therapy has been shown to be twice as effective as any previous treatment and clears the virus in about 40 per cent. of those treated. We have provided additional funds to make sure that the NICE-approved therapies can go through.

There are grounds for further optimism. I understand that there is a new treatment, a modified slow-release form of interferon called pegylated interferon, which became available last year. That appears to be even more effective than conventional interferon, and when used in combination with ribavirin, it clears the virus in about 55 per cent. of cases. That is good news for people who have been infected.

We have recently been developing a national strategy on hepatitis C, and considering ways of raising public awareness, raising the awareness of clinicians, trying to prevent new cases of hepatitis C, making sure that there is early diagnosis and access to the new therapies, developing managed clinical networks to get everybody in the field involved and, crucially, improving the evidence base so that we can reduce new cases and treat people effectively. Much work is going on in connection with hepatitis C.

The chief medical officer's infectious diseases strategy, XGetting Ahead of the Curve", recommended that we have the hepatitis C strategy. That will be followed up by an action plan setting out the action that we can take to make a difference. I assure the hon. Gentleman that the NHS takes the matter extremely seriously. I understand the frustration and the difficulties faced by his constituent, among others, but unfortunately, in the circumstances it is not possible for the Government to go outwith the normal system of clinical negligence in this case. We will do everything we can to make sure that people get the proper treatment, and that the proper support is available to the thousands of people and their families for whom hepatitis C is an extremely important issue in their lives.

Question put and agreed to.

Adjourned accordingly at three minutes to Eleven o'clock.