My Lords, to the end of 2009, the latest year for which complete data are currently available, a cumulative total of 79,165 laboratory diagnoses of hepatitis C had been reported to the Health Protection Agency. The HPA advises that the number of laboratory diagnoses made will be higher than this because of underreporting, but the number of undiagnosed individuals is not known.
The Health Protection Agency refers to a very much higher number of people—possibly 250,000—being infected with hepatitis C. That is its estimate, and there are other estimates of up to 450,000. I very much welcome my noble friend’s detailed Answer, but since 1997 the number of cases of hepatitis C reported each year has almost trebled. The majority are still undiagnosed, and I ask that in future there is more systematic and proactive screening of prisoners in prison to ensure that we diagnose more cases.
My noble friend is absolutely right that there is a range of estimates of both the incidence and the prevalence of hepatitis C. I could spend some time explaining why that is, but it is partly to do with the long incubation period of hepatitis C, the symptoms of which do not manifest themselves for many years. My noble friend is also right that prisons tend to be a repository of this condition. In recent years, the story there has been good. The provision of information for prisoners and prison staff on hepatitis C and other blood-borne viruses has increased. There has also been increased access to hepatitis C testing for prisoners. We have had improved access to treatment for prisoners with hepatitis C and to drug treatment generally, which is of course absolutely germane to this condition. I believe that the focus is there, but that there is more to do.
My Lords, I am sure that the noble Lord will know that precise figures are not available for that group, but I hope he will also recognise that we have taken steps to improve the financial help available to these unfortunate victims of the contaminated blood disaster of the 1970s and 1980s.
My Lords, does the Minister agree that under GMC rules on informed consent, it is not proper to take a sample of blood for another purpose and then to screen that blood for the presence of hepatitis without the consent of the individual? However, does he further agree that for research purposes or for epidemiological research, it is perfectly proper to screen large batches of blood samples taken for other purposes, such as epidemiological research, provided that the results are anonymised?
The noble Lord is quite right that generally speaking there is no problem about using human tissue samples for research purposes where those samples are anonymised. In other circumstances, of course, the Act demands that the principle of consent should apply.
My Lords, obviously there is no general screening programme for hepatitis, and we appreciate the severity of cases such as that involving contaminated blood, which has just been referred to, but can the Minister explain what an ordinary person should be looking for before submitting themselves for screening? It must be advantageous to have such conditions diagnosed early rather than late.
My noble friend is absolutely right that early diagnosis is always a good thing for this condition as it is for many others. We know who the risk groups are, and therefore the important thing is to target screening and testing at those groups. Predominantly, the at-risk groups are injecting drug users or former injecting drug users; they account for well over 80 per cent of cases of hepatitis C. Those groups are the focus of our efforts in primary and community care, and especially in prisons.
In the case of hepatitis C, treatments recommended by NICE are of course available that, if taken early enough, can dramatically affect the course of the disease. I think we are in danger of straying into legislative territory that is perhaps the occasion for a wider debate as to how, if at all, we might expand the scope of the Human Tissue Act so as to reach those cases that I think the noble Lord is referring to.
My Lords, we all welcomed the Government’s Statement in January announcing increased support for those with hepatitis C. Will the Minister please tell us what progress is being made to deliver the exception from means-testing of the new payments and the provision of prepayment prescription certificates, and which national charities are in receipt of the additional funding of £100,000 to support the victims of hepatitis C and their families?
My Lords, the Caxton Foundation has been established to address the group of hepatitis C victims identified in the Government’s Statement earlier this year: that is, those victims of the contaminated blood disaster who went on to develop hepatitis C. I understand that the foundation will begin to make payments later this year that will include payments to those who are eligible for the free prescriptions service to which she referred.