Hepatitis C

Part of the debate – in the House of Lords at 7:50 pm on 12th March 2002.

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Photo of Lord Astor of Hever Lord Astor of Hever Conservative 7:50 pm, 12th March 2002

My Lords, I begin by paying tribute to the noble Lord, Lord Morris of Manchester, for once again bringing before the House the important subject of those people with haemophilia who were infected with hepatitis C by contaminated NHS blood products. The Haemophilia Society is fortunate to have the noble Lord as its president. Very few national charities or patient representative groups can have such a committed president working so tirelessly and effectively for their cause.

I pay tribute also to the Haemophilia Society for its excellent campaigning and the support work that it does, not only for people with haemophilia, but also for their families and the dependants of those who have died.

I also mention the work of the Haemophilia Alliance, which comprises the Haemophilia Society and the UK Haemophilia Centre Doctors Organisation. They are drawing up the service specification of care for people with haemophilia and related bleeding disorders.

The noble Lord, Lord Morris, made the point that, for the third time in a year, the Government have failed to put up a health Minister for this debate. I have the greatest respect for the noble Lord, Lord Filkin, who always answers my questions effectively. However, I am disappointed that the noble Lord, Lord Hunt, is not here in person to demonstrate the Government's real concern for this group of people who, unfortunately and tragically, received infected blood products before the hepatitis C infection could be removed.

In addition to the inadequate support services for managing HCV, and the poor management and care after diagnosis, the noble Lord, Lord Morris, set out some of the problems that such people face financially and emotionally. It is quite wrong that they should experience this social stigma or discrimination, wherever it occurs. We on these Benches feel a great deal of sympathy for them.

In preparing for this debate, I went back to the debate introduced last year by the noble Lord, Lord Morris, to look at the issues that we raised at that time. On the subject of comprehensive care centres, which provide specialised care and support for patients and their families, some progress does seem to have been made. Postcode prescribing is less the case this year, but there are still some glaring gaps.

In the debate last year, I raised my concern that there was not one CCC in the South West. For haemophiliacs living in Cornwall or Devon the nearest centre was in Basingstoke, in Hampshire, 237 miles from Penzance. That situation has not changed, as was highlighted by my honourable friend the Member for South West Devon in a Westminster Hall debate last November. I understand that the regional commission group is considering the provision of a CCC in the West Country. I should be grateful if the Minister, in replying, could give some hope to the haemophiliacs living there, given the very real problems that they face.

Last year, I asked about the Hepatitis C Expert Steering Committee which the Government were setting up to produce a consultation document. This was to consider the wide range of specialist services which treat, support and care for people with hepatitis C. This consultation document, Children in Need and Blood-Borne Viruses: HIV and Hepatitis" was published last month. Unfortunately, it was a missed opportunity. It addressed children only, not adults. All children are treated with recombinant up to the age of 16, so the issue of adults being infected with blood-borne viruses was not addressed.

I also raised the issue of there being no nation- wide system to identify and monitor people with haemophilia infected with HCV and asked the Government what plans they had to ensure that such a system was created. Unfortunately, no progress has been made on central identification. Will the Minister tell the House what intentions the Government have on the issue?

I raised the important point that the majority of health authorities either did not provide treatment for HCV, or did so only on a limited and inadequate scale. Once again, no progress has been made, although we hold out some hope that, following the reforms to NICE, this wrong will be righted.

In last year's debate, the noble Lord, Lord Clement-Jones—who I am sorry to see was unable to take part in the debate—pointed out the fears that the Government were putting haemophiliacs in England at risk from variant CJD. That situation has also not changed. Indeed, as the noble Lord, Lord Morris, pointed out, only 43 per cent of patients are receiving the safer, but more expensive, alternative to the blood plasma which they have been warned may contain vCJD. Indeed, many haemophiliacs are refusing blood transfusions because of fear of contracting vCJD. As the noble Lord, Lord Morris, said, some have resorted to treatment strikes, even though they could die without regular transfusions. In England, unless they are new patients, or under 16, haemophiliacs must use blood products derived from human blood, with all the risks that this might entail; whereas sufferers in Scotland, Wales and Northern Ireland are given the safe, genetically-produced recombinant Factor 8. That is indeed postcode care for haemophiliacs.

Last year, I cited the absurd example from the North West. The policy adopted by the NHS commissioners in Wales means that all haemophiliacs living in North Wales are entitled to receive recombinant Factor 8 irrespective of age, postal code or viral status, and attend the Manchester or Liverpool centres. However, many people living in Manchester, Liverpool and the surrounding areas do not have the same rights and benefits. That situation has not changed.

If someone is infected with contaminated blood products provided by the NHS, surely that person is entitled to the best support and treatment. The Haemophilia Society is in no doubt as to the superior quality of recombinant blood agents.

In a Written Answer last year, the noble Lord, Lord Hunt, said that his department was carefully considering the case for extending provision of re-clotting factors to all haemophiliac patients in England. Has any progress been made on this issue? What reason is there for further denying to adult haemophilia sufferers in England the safer recombinant clotting factors? Was the decision to withhold this treatment taken on financial grounds?

In the Westminster Hall debate on 20th November, the Minister said that there was a world shortage of recombinant Factors 8 and 9. However, according to an article in Haemophilia World, supply to the UK is available in sufficient quantities. Moreover, the noble Lord, Lord Hunt, admitted, in an exchange with the noble Lord, Lord Turnberg, that that shortage has now eased. According to the Government, the additional cost of making recombinant treatment available to all haemophiliacs in England would be in the region of £50 million a year. Can the Minister enlighten the House on whether recombinant will be provided to all, regardless of where they live or their age?

Last year, I raised the issue of the lack of welfare support for many haemophilia sufferers. Again, nothing has changed. It would be helpful to have some reassurance from the Minister that the problem will be looked at.

The need for more funding for research was also raised. Progress is being made slowly, but it is too slow for those infected. Perhaps the Minister can touch briefly on funding for research when he winds up.

Finally, in a Westminster Hall debate on 14th November last year, the health Minister John Hutton announced the Government's intention to reform the system for dealing with clinical negligence claims, with a White Paper due "early next year". As it is now "early next year", can the Minister tell the House when it might be forthcoming?