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We made similar recommendations on a range of pragmatic and effective things to be done, such as distributing needles among drug users who were in the habit of sharing needles, aggressive campaigns to raise awareness and so forth. In the US, all such advice was disregarded by the Reagan Administration as being morally improper, whereas in the UK, under the wise leadership of the noble Lord, Lord Fowler, and others who will speak, the recommendations were implemented. The outcome was summarised very well in a recent report from the Australian Lowy Institute; a foreign policy think tank. It states:
“Generally, countries adopting pragmatic HIV containment policies tended to secure substantially better HIV outcomes than those countries that promoted HIV/AIDS responses based on sexual abstinence, criminalisation of prostitution and zero tolerance for injecting drug use. This was certainly so in the case of Australia and the US which from the early 1980s followed highly dissimilar ... AIDS containment policies. After 25 years, the per capita prevalence of HIV ... in the United States is well over 10 times”,
Until quite recently, you could have said, “Similarly for the United Kingdom”. But although the per capita incidence of HIV in the United Kingdom is still markedly less than in the United States, it has recently seen a notable upsurge—that is, in the number of new infections per unit time. It is an upsurge that has evoked remarkably little public attention and concern. In what follows I will first sketch that history and recent events. Secondly, I will say a few words about the causes and our uncertainties about them. Thirdly, and most importantly, I will comment on what we might do about it. In all of this, I am drawing, in a ruthlessly compressed manner, interlarded with opinionated comment, on such things as the Government’s excellent 2001 National Strategy for Sexual Health and HIV; the very recently published Health Protection Agency Testing Times—HIV and Other Sexually Transmitted Infections 2007; the European Academies Science Advisory Council recent report on the impact of migration on infectious diseases in Europe, the Lowy Institute, which I mentioned; primary research literature; and, in many ways most importantly, on a variety of reports and recommendations from UK charities and NGOs such as the National Aids Trust, the Terrence Higgins Trust, the British HIV Association and the African HIV Policy Network. I have no formal
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I trust that the day will never come when PowerPoint intrudes into this Chamber, but for a quick history of what has happened it would be a help. I shall attempt a verbal sketch accompanied by arm waving.
In the early days when we did not know what was happening, there was an exponential rise in the incidence of HIV and AIDS. In this country, about a third of it was in the drug-using community and some two-thirds was in the male gay community. In future, I will use the term from the technical jargon of my profession, “men who have sex with men”. Once we realised what was happening—again, under the leadership of the noble Lord, Lord Fowler, and others—the pragmatic things that were implemented saw that rise not merely halt, but come down a bit. Then, through the late 1980s and throughout the 1990s, the number of new cases each year ticked over at about 2,000 a year. There was a decline in the number of cases arising from drug use and within the men-who-have-sex-with-men community, but that was somewhat counterbalanced by a slow rise in cases in the heterosexual community. Indeed, at approximately the end of the 1990s the incidence among heterosexuals rose to exceed that among men who have sex with men.
At that time, there set in a marked rise in the number of cases among drug users—a slow reversal which still represented a small fraction of cases at much less than 10 per cent. About a third of cases were among men who have sex with men; from a decline there was a slow rise that shows no sign of turning over. In the heterosexual community, there was a really steep rise that has turned over in the past few years, but, overall, the annual incidence has roughly trebled.
I am afraid that there must be a short and inconvenient pause while I put my notes, which I have dropped, back in order.
What are the explanations for the rise? To some extent, it is the praiseworthy outcome of better testing by the Department of Health, but the statistics are very imperfect. It may be that as many as a third of people who are HIV positive remain undiagnosed. There are interesting tests which are anonymised—you ask people to provide a blood sample, but do not tell them the result. The results show some depressing things. For example, the 2007 report showed that among sub-Saharan African heterosexuals visiting genital-urinary medical clinics, of those who were HIV positive but undiagnosed when they went into the clinics, a third emerged still undiagnosed—and that is an underestimate because another anonymised study shows that people who are HIV positive are much less likely to accept the test than those who are HIV negative.
There are also indications of a general rise in sexually transmitted diseases. For example, there were some 3,000 cases of syphilis a year by 1977. The number reduced to 400 or 500 through the decade of the late 1980s and 1990s and has now increased to about 3,500. An increase in migration from sub-Saharan Africa has certainly had an impact. In roughly two-thirds of cases among black Africans the infections were
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So what should we be doing? I begin by observing, as Susan Sontag memorably reminded us, that illness is stigmatising, and no illness is more stigmatising than sexually transmitted disease. But our attitude has to be, both for moral and pragmatic reasons, factual. HIV is an illness; it is an illness that we can treat; and the sooner that we get infected people into treatment, the better for them, the better their prognosis, and the better for the community, because those people will be less infectious.
Therefore, the first thing we should do is ensure better screening. In my opinion—and in the opinion of the British HIV Association and of the European Academies Science Advisory Council—we should be much more proactive in screening migrants once they are admitted. However—this is something I wanted to quote and dropped—the European Academies said:
“Detection of disease on screening must not be used as a reason to deny entry to the European Union”—
- “for that would deter migrants coming to screening and the identification of high-risk patients. Migrants need to be offered the same access to healthcare services as the rest of the population”.
That is right morally, it is right for the infected people and it is right for the British community, because it diminishes the spread of infection. As many charities have strongly urged, the testing should be opt-out, not opt-in.
I refer to another thing that I lost as I dropped my papers; namely, a recent study that is about to be published in a leading AIDS journal by Anne Johnson and her colleagues. It is a study of newly diagnosed HIV-positive Africans attending London HIV treatment centres between 2004 and 2006. By the time that they were diagnosed, roughly half were in an advanced state of HIV, with a CD4 count—for those familiar with it—of less than 200. However, in the year prior to diagnosis, more than three-quarters of the people in this study—76 per cent—had seen their GP and only one in seven had had their GP raise the issue of HIV, much less offer a test.
Once they have been tested, we need to treat people, we need to treat everybody and we need to treat them all for free. At present, undocumented migrants and failed asylum-seekers can be diagnosed for free, but not treated for free. Again, that is wrong morally and it is wrong pragmatically.
Thirdly—and this is perhaps trickiest—not only should we diagnose and treat, but treatment must be accompanied by counselling about safe sex and other behavioural issues. The Terrence Higgins Trust is keen on GPs carrying out testing, but is concerned that GPs currently may be reluctant to offer tests because of a widespread belief that they are then obliged to provide pre-test and post-test counselling. Interestingly, the Chief Medical Officer has responded to this—and I can understand the problem—by saying that a short
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Finally, underpinning all this—I may go a minute over, because I dropped my papers—is the question of education. I have a superb quote from our own note on this subject. It says:
The same MORI poll that I mentioned earlier discovered that,
- “fewer people were able to identify correctly the ways in which HIV is transmitted in 2005 than in 2000 ... only 46 per cent of the respondents replied they always use a condom with a new partner, and 15 per cent would ‘never’ or ‘rarely’ use one”.
With all of this outreach, it is distressing, though understandable, to learn that the £300 million allocated to sexual health by the Department of Health in 2004 was disproportionately spent on treatment rather than education; and that only 30 of 191 primary healthcare trusts spent all the money that was allocated.
Therefore, my strongest recommendation is that we need to make better use of charities in counselling, education and, indeed, testing than we currently do. The Department of Health recently gave £1 million to the African HIV Policy Network for this purpose. That is a good start but, considering the colossal sums of money that slosh around in the Department of Health, often to little effect, £1 million in this context is ridiculous. In my opinion, much more should be spent on making use of charities because they know their communities and are less process-oriented and more action-oriented than most of the primary healthcare trusts and the Department of Health.
I end by simply saying that we need to diagnose, treat and counsel, but that is for the people who are already infected. For them and everyone, we need to do a better job of educating. We need to put our foot back on the pedal. I beg to move for Papers.
Noon
Baroness Gould of Potternewton: My Lords, I express our thanks to the noble Lord, Lord May, for introducing this important debate in such an informative and interesting manner. I give a welcome to the small team of us who have been pushing this argument for some time. We look forward to the noble Lord joining us on other occasions.
A quarter of a century ago, we were confronted with people dying from a new virus—subsequently defined as HIV. The public health campaign launched at that time by the noble Lord, Lord Fowler, who seems to be receiving a lot of praise this morning, made sure that the whole country knew of the threat of HIV. As HIV became a managed illness, the threat to life reduced and those diagnosed with HIV could look forward to an expectancy of life. However, public awareness has not been maintained. Despite the production of the 2001 strategy and the introduction of other strategies and initiatives, people are unaware of the consequences of HIV. The question that must be asked is: why has the country forgotten about HIV?
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Successes and advancements in the medical treatment of HIV and AIDS have led to complacency about the condition. That has led to a concern among many people working with HIV-infected people—particularly the smaller HIV groups—that HIV has fallen off the political agenda. That view is supported by the major funders, who are having difficulty in persuading donors that transmissible HIV is still prevalent and needs support. There is no question but that public interest in HIV and AIDS in this country has declined.
For those reasons, the Independent Advisory Group on Sexual Health and HIV, which I chair, turned its attention to public health and HIV/AIDS and invited specialists and experts to discuss this critical issue at a seminar held last year. Represented at the seminar were charities, funders, clinicians, support groups and academics. In devising the key questions to discuss, we tried to relate them to people living with HIV: which issues need to be addressed; what is being done to eliminate stigma and discrimination; to what extent are current policies and practices appropriate and effective; and what changes need to be made to ensure that services, provision and planning are in place to meet the needs and challenges of HIV? As a consequence of that seminar, we have now established a working group, with the help of the department, to look further at the issues.
Any consideration of HIV has to start with the fact that the number of new diagnoses per annum continues, as the noble Lord, Lord May, said, to rise steeply. This week, the HPA announced a figure of 6,840. There are many reasons for the increase. For example, it may be due to the fact that more people who may have been affected for some time are coming forward and it may also be due to heterosexual contact in high-prevalence areas. However, tragically, not all cases are caught in time.
A disturbing statistic was released from a major audit carried out by the British HIV Association, in which it was reported that late diagnoses account for a quarter of HIV-related deaths in adults. There is also significant evidence that a proportion of those diagnosed late with HIV infection had been in contact with healthcare professionals in the preceding year with symptoms that in retrospect were likely to be related to HIV.
The number of undiagnosed cases is still too high, to quote the Terrence Higgins Trust; HIV testing must be made easier, quicker and more accessible for everyone who has a risk of infection. Although infection rates are increasing, HIV does not warrant its own performance indicator within the NHS—even though that is so necessary as HIV is now a countrywide problem. That means that some PCTs are struggling to pay for treatment costs, so checking the levels of performance is essential.
Testing strategies are very relevant to the level of diagnosis. Following a point made by the noble Lord, Lord May, last September, the Chief Medical Officer and the Chief Nursing Officer wrote jointly to all doctors and nurses calling on them to offer an HIV test to their patients if they might have been exposed to HIV infection and to recommend that they should
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While there is a need to develop earlier testing and prevention of late diagnosis, there is also a need to intensify HIV prevention. Many of the advantages that the UK has achieved in terms of HIV/AIDS prevention are now considered to be declining when viewed against the best international standards. There has been a decline in availability of proven harm reduction and prevention initiatives; for instance, the withdrawal of needle-sharing provision for infected drug users entering prison. As part of a prevention strategy, targeted campaigns are vital, so the increased funding of £1 million—maybe not enough—given last year to the Terrence Higgins Trust to target gay men and African communities was very welcome. These campaigns need to be accompanied by more outreach work and an increase in behavioural interventions, particularly relating to safe sex. It makes economic sense. It has been estimated that preventing onward transmission of HIV saves the public purse up to £1 million per annum.
HIV and AIDS differ from other long-term chronic conditions. It is a communicable disease, associated with a negative stigma and fear that is not usually associated with other chronic illnesses. It triggers widespread stigma and discrimination. It builds prejudice and intolerance about poverty, gender, sex, sexuality and race. It reinforces existing social stereotypes and inequalities, inequalities that make women seem inferior to men.
Stigma impedes disclosure and remains the most significant barrier to people testing for HIV and so deters people from using healthcare and social care services, thereby contributing to the social exclusion of those living with HIV. It is disturbing that there is clear evidence of discrimination relating to HIV status by some people working in the NHS and in social care. That is shown by expressing inappropriate comments, taking excessive precautions, and in some instances, refusing to treat or failing to refer or test. That is unacceptable and should be a factor in the registration rules under the Health and Social Care Bill currently going through this House.
Good social care is essential. HIV is not only a medical condition but also a social one: HIV patients have complex needs that cut across both health and local government services, whether related to child care, housing, legal or benefit advice. So the continuation of the ring-fenced AIDS support grant is welcome in enabling local authorities to provide improved support and services for people living with HIV. But those services need to recognise the different groups of people disproportionately affected. The needs, for instance, of African women will not be the same as, say, those of gay men. Growing old with HIV is a relatively new reality—people who do so have a range of previously unconsidered needs such as isolation, the long-term effect of medication and living in care homes, with the need for specialist social
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The problem for asylum seekers is further exacerbated by the NHS charging regulations, which were introduced in April 2004. Previously, anyone who had been in the UK for 12 months or more could access HIV treatment free of charge. The new regulations now require refused asylum seekers to pay for secondary care. This discriminatory treatment has no sound basis, as the Government have been unable to provide any evidence of HIV-related health tourism. For all other serious communicable diseases, including TB and other sexually transmitted infections, such treatment is free of charge. It is clear that these changes to the regulations are causing serious hardship.
These measures actually prevent vulnerable people, including pregnant women, accessing the vital treatment that they need because they cannot afford the charges. I understand that a government review board, jointly led by the Department of Health and the Home Office, is currently looking at the NHS charges that are applied to refused asylum seekers. Will my noble friend explain why HIV is the only serious communicable disease that is not exempt from NHS charges? When can we expect the government review board to report?
Services also need to be based on sound evidence of what works, including an assessment of evidence on self-management and greater patient empowerment. There must be consistency in standards of care, so there needs to be adequate training, awareness raising and financial incentives. That includes investment in the training of GPs and primary care practitioners, which is currently not sufficiently in place.
To guarantee proper management, there has to be a collaborative approach involving both primary and secondary care providers. This means that PCTs and SHAs should ensure that resources for prevention, promotion and treatment are treated in parallel. Prevention should not have to compete with treatment, as is the current position; they are not alternatives. To make that more easily possible, HIV commissioning services should be a single entity.
In conclusion, what is clear is that the effective tackling of HIV and AIDS requires joint efforts, nationally and locally, across politics, education, health, religion, law enforcement, immigration and social services. There has to be a whole-society approach. This means building leadership from all the sections of society, including national and local government, affected communities, NGOs, faith-based organisations, the education sector, the media and the public and private sectors.
The Government have a responsibility to ensure that the associated resource requirements are sustained for the long-term, to co-ordinate multi-agency efforts and leadership. There has to be the same level of leadership shown by the Government to the prevention and treatment of HIV in this country as is shown, quite rightly, in the response to the global epidemic through the policies driven by the Department for International Development. To do that requires strong, informed and committed leadership. HIV has to be a public health priority.
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12.13 pm
Lord Fowler: My Lords, it is a great pleasure to follow the noble Baroness, Lady Gould, who has done so much work in this area, so much of which has been immensely valuable. I also congratulate the noble Lord, Lord May, on the way in which he introduced the debate. As the noble Baroness, Lady Gould, mentioned, it is rather nice to have a debate on HIV/AIDS introduced by someone who is not one of the usual suspects, who are here. It was an outstanding speech. We look forward to the presentation with slides, which I think he would have preferred to have given. I say to the Government Whip, whom I welcome, and who will reply to this debate, that I hope the noble Lord’s speech will be referred to the relevant health Minister so that it can be studied.
Both speakers referred to our campaign in the 1980s. The noble Lord, Lord Hayhoe, who is in the Chamber, was in the Department of Health when I, too, was there. I think that he will confirm that the policy was introduced not without its own struggles and oppositions at the time.
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