HIV and AIDS in the UK

Lord Rea Excerpts

Thursday 1st December 2011 Lords Chamber

[Lord Rea]

I thank the noble Lord, Lord Lexden, for his contribution and congratulate him on it. It was very refreshing to have someone who was not on the committee bring us some fresh insights and information from a part of the world which we did not visit.

Like all speakers, I congratulate the noble Lord, Lord Fowler, not only on his excellent introductory speech and on securing this debate on this day, but, more than this, on his dogged persistence with this issue over the past quarter of a century and his courage and correct judgment in putting HIV/AIDS so startlingly on the map in the mid- 1980s. As my noble professional friend Lady Tonge said, he faced strong disapproval and opposition from powerful members of the establishment, despite getting all-party support. He wisely persisted with the tombstone public education campaign as well as the controversial but highly successful needle exchange scheme which he has told us about. As result, the UK became the most successful country in the world in curbing the epidemic. In the developing world and some developed countries, the epidemic has continued to spread and, in sub-Saharan Africa, has resulted in the expectation of life for the whole population being reduced by 10 to 15 years with serious socioeconomic effects. But that is another debate, although a highly important one.

It was a privilege to serve on the Select Committee. I thank not only our chairman and our specialist adviser, Professor Anne Johnson, but also our two brilliant, dedicated clerks and, last but not least, our highly efficient secretary Deborah Bonfante, who handled the mountains of printed paper which passed before our eyes smoothly and effectively. Our witnesses, whether scientists, clinicians, voluntary sector workers or patients, were always knowledgeable and helpful.

I shall concentrate on some clinical and epidemiological aspects of the epidemic, emphasising, as all speakers have done, the imperative need for better prevention. This was the common thread which drew all our witnesses together and is the theme of the report. It is often said that the persistence of HIV in the developed world is at least partly due, as the noble Baroness, Lady Tonge, said, to the availability since the mid-1990s of antiretroviral treatment that prevents HIV developing into AIDS, and that this has resulted in greater risks being taken by some sections of the sexually active population now that HIV is no longer a death sentence. Even if this was only partly true, it indicates widespread ignorance of the burden that living with HIV can cause, as several noble Lords have most vividly described, even when ARV treatment is being correctly given. Though some of them will live a full lifespan, others will not be so fortunate. There are often unpleasant side-effects, though they are now less common since combination antiretrovirals have become more refined.

The future health and lifespan of HIV-infected people receiving ARV depends very much on the stage that the infection has reached when treatment is started. Early diagnosis after infection is thus extremely important. ARV drugs are much less effective when there is a high viral load, so that full blown AIDS symptoms which are difficult and expensive to treat can develop, even when the subject is on ARV treatment. Fifty per cent of newly diagnosed cases in the UK are classified by the HPA as being at a late stage of infection, with a CD4 cell count of less than 350 per cubic millimetre, just over half of which are severely immunocompromised, with a CD4 count of less than 200. The late diagnosis rate varies from group to group, being highest among heterosexual men—63 per cent of them. It is estimated by the HPA that 22,200 people are living with HIV infection in the UK who are undiagnosed. Most of them are unaware of their condition; some of them are developing high viral loads which means that they will respond less well eventually to treatment as well as acting as a reservoir of infection.

HIV carriers who are being successfully treated, on the other hand, have a very low infectivity of 1 per cent or 2 per cent but even this low rate means that they must still use a condom or take other steps to reduce the chance of passing on their infection. So while acquiring HIV infection is no longer an automatic death sentence it is still a life sentence—it means a lifetime of medication and the other serious drawbacks I have described—a much worse fate than that of other sexually transmitted diseases which can now mostly be treated and cured.

In addition, as the noble Lord pointed out so vividly, people living with HIV are subject to a number of social consequences. We heard from several of our HIV-positive witnesses examples of stigma against people with HIV in employment and in social settings, despite successful ongoing treatment. Frequently there are psychological symptoms, sometimes very severe, including suicide. Life insurance policies and mortgages are difficult or impossible to obtain by HIV-positive people, according to the Terrence Higgins Trust. If after perseverance a policy is agreed, the premium is highly loaded and no cover will be given for illness or death from an HIV-related condition. That puts people at a huge disadvantage when attempting to live a full life, and buying a house, for instance.

The noble Lord, Lord Fowler, and others have described the increasing financial burden caused by HIV infection, particularly the cost of drugs. This cost is increased if HIV is detected late and complications have to be treated in hospital. But the main cost of HIV comes from the persistence and spread of the epidemic through sexual contact with HIV carriers who are not aware of their HIV status. As other noble Lords have pointed out, this is why one of the main messages from our witnesses and the report is the need to widen the screening net by testing in more settings than previously. In fact I suggest testing wherever a blood test is being carried out for any reason and on certain other occasions, for instance when a patient is having a health assessment or being registered at a general practice, for hospital out-patients or in-patients and in STD clinics even when a blood test was not originally planned.

The case for this policy is very well argued in the Time to Test for HIV report, mentioned by the noble Baroness, Lady Gould, published this year—or was it last year?—by the HPA. We visited a group practice in Brighton where routine HIV testing was done as well as the carrying out of general healthcare of HIV patients being followed for their HIV and treated by at the HIV unit at Royal Sussex County Hospital. When a positive test result meant that someone had a fatal disease there was a policy of only testing when suitable counselling for this eventuality was made available. Now that a positive test does not have quite such a dramatic meaning, it is acceptable for the test to be carried out by any suitably trained professional, providing of course that the consent of the patient is first obtained; an opt-out possibility must always be offered.

I have not covered our recommendations at all systematically. There are 53 of them; each has been covered by the Government’s response and many of the report’s recommendations have been accepted. I am particularly pleased that the recommendation to make home testing legal and quality controlled has been accepted. This was the suggestion of many of our witnesses. Also welcome is the lifting of the requirement for all overseas visitors to have to pay for HIV treatment. Lifting this charge makes good public health sense.

I was, however, disappointed in the Government’s response—other noble Lords have mentioned this—to paragraphs 236 and 237 of the report, which called for the integration of HIV and sexually transmitted disease services. This is particularly relevant in the light of the changes envisaged in the Health and Social Care Bill now in Committee in your Lordships’ House. I hope that the noble Baroness who is replying to this debate will be able to raise in Committee some of the issues that I am about to describe.

We heard justifiable concerns about the split between HIV treatment services to be commissioned by the National Commissioning Board, and the provision of prevention services for HIV and other STIs in genitourinary medicine clinics to be provided by local authorities—through their ring-fenced public health budgets, presumably. The proposed changes claim to enable integration between the services, but in this case it seems that the reverse is being proposed. Many PCTs have increasingly brought HIV and STI services together under the same roof, as they logically should be. In this case the opposite seems most likely to occur. Perhaps the noble Baroness can tell us the department’s latest thinking on this particular problem.

I was going to speak also about the future of the HPA, but that has been covered extremely well by the noble Baroness, Lady Masham, and, as I have now been speaking for 12 minutes, I shall end on that point.