HIV and AIDS in the UK

Lord May of Oxford Excerpts

Thursday 1st December 2011 Lords Chamber

[Lord May of Oxford]

My Lords, I begin by paying tribute to the noble Lord, Lord Fowler, with sincerity undiminished by the repetition. He did a superb job of chairing an excellent committee. I thought I would be unique in paying tribute to our special adviser, but the noble Lord, Lord Rea, anticipated me. Anne Johnson, with whom I have had the privilege of working and publishing, for that job, was not merely the best person in Europe but the best person, arguably, in the world. She was absolutely superb. She has a connection with this House that is not widely appreciated. If my memory is correct, she is the niece of a very distinguished late Member of the House.

I think the Government’s response to our report was basically a good one. That must be borne in mind as I now go on to air the respects in which I found it disappointing. My speech will be perhaps a little different in that it will be more academic. However, it will be no less impassioned.

I have on a previous occasion drawn a graph with my hand and scattered my papers down the aisle and I risk doing it again. It is worth reminding the House what has happened not only with HIV but with sexually transmitted diseases. When HIV first appeared it was mainly among men who had sex with men and among drug users, and its incidence rapidly went down in this country, Australia and New Zealand because of effective measures such as those we have heard about. It then, for about 15 years, ticked along at a low level, slowly further declining among drug users and men who have sex with men and slowly increasing among heterosexuals to keep it at a roughly constant low level. However, over the past six, seven, eight years it has begun an upswing that shows no sign of diminishing. The question before us, which we have heard a lot about, is: why is this?

It is a fact that many studies of people—particularly young people—reveal that they are less well informed and less concerned about sexual health than was the case 20 years ago. As our report says, this is possibly because diagnosed early the majority of people with HIV can expect a near normal life expectancy. That is true and good and it needs emphasis, not least because it has a complicated and curious association with the stigmatisation initially that HIV was a death sentence. While that is true and good at the moment, it is not quite as simple as it is presented. We do not yet have clear sight of a vaccine. I declare an interest in this subject as I am co-author of the first and contentious prediction of the demographic impact of HIV on sub-Saharan Africa that was grossly pessimistically at odds with the World Health Organisation and others, whose models were much more elaborate but epidemiologically stupid. To my great regret, we were right.

I have a continuing interest in a fact not commonly appreciated in debates such as this. Although our almost magical understanding of the interaction between an individual virus and the immune system cells can enable us to design a drug or sequence of drugs that suppresses viral replication, we still do not have an agreed understanding of the pathogenesis—of how the initial infection is handled. Escape mutants appear and at first they are handled, then finally the immune system goes down. My view is that it will be difficult to have a vaccine before we have an understanding that matches the brilliant descriptive molecular biology with a more complex sense of the incredibly complex dynamics of the immune system and the many escape variants that it is trying to handle.

At first, we could not handle the resistance that quickly evolved to the first antiretrovirals. My research group, among others, was involved in that in the 1990s. We now have a mixture of a richer panoply of drugs, combined with a better understanding of how to use them, and we can keep people alive—but how long that is going to last is not something that anyone can sign off on. It is not a question of whether eventually, as with any set of such agents, we will finally run into a barrier; it is not a question of whether but of when, in relation to the timescale of when we have a vaccine. One thing that we sought in our discussions was an estimate of that. I am pleased to say that very good people working on this are of the view—which I share—that we probably will have a vaccine before we run into the wall. But we do not have a guarantee.

We have a very good reason, well beyond that of simple compassion or the financial details that we have heard about, not to take our foot off the pedal but to keep emphasising the need to slow down and reverse the increase in the incidence. This is a three-pronged thing. We need uninfected people to appreciate the need to be more careful; we need infected people to be diagnosed earlier so that they can be treated earlier, which will make them less infectious to a degree; but to do that, the third prong, we need infected people to know that they are infected. That brings us to some of the key recommendations that did not get the in-your-face affirmation that I would have wished.

The first recommendation is that:

“HIV testing should be routinely offered and recommended, on an opt-out”—

not an opt-in—

“basis, to newly registering patients in general practice, and to general and acute medical admissions”.

I realise that that will not be popular with some groups, but that is what we recommended. We also said that routine and opt-out testing should be offered in other circumstances that are related to the trend in the upward rise of sexually transmitted infections—hepatitis is one, or associated things such as TB. The Government’s response to this was broadly welcoming, but speaking from my five years’ experience as Chief Scientific Adviser first to Major and then to Blair as a permanent secretary embedded as a kind of anthropological tourist in a strange culture. I recognise, I am afraid, in the response to that recommendation, the caution and elevation of process over product that is characteristic of our well meaning and excellent Civil Service. I would like there to be a much more positive and unambiguous affirmation of the need to do that. I have resisted expressing that thought with colourful Australian adjectives.

Another of our recommendations is that we repeal the ban on home testing kits, with appropriate caveats. The Government supported us, but with subtle nuances of language they did not accept the recommendation, and said that they would review the policy. They will think about thinking about it. That is not good enough.

What is totally indefensible on ethical and common-sense grounds is our current policy that visitors or others without the right to live here can be freely diagnosed as having HIV but cannot be treated. This is ridiculous simply on common-sense financial grounds, much less unambiguous ethical grounds, because it demotivates people from even being tested. The government response did not agree with or even support us. It used the dread words “review policy”. That is not good enough.

In general, we also recommended,

“that the Department of Health undertake a new national HIV prevention campaign aimed at the general public”.

Here I shall go off-piste to offer a personal opinion on how best to do this. I am strongly of the view that wherever possible this sort of activity should be delivered though the NGOs, not the NHS. That is because some 10 years ago £400 million was put into a campaign on sexual health by the Department of Health. In the event, only 31 of 191 primary care trusts spent a penny of the money on sexual health, and none spent any of it on awareness campaigns. What fraction of that £400 million was given to NGOs? It was 1 per cent. It would have been much more effective if 1 per cent had been given to the primary care trusts and 99 per cent to the NGOs.

In summary, despite the negative tone of some of the things I have said, the Government have given us a welcoming response and they have a proud record in this, as we have heard. I was living in the United States when the committee of the noble Lord, Lord Fowler, was acting, and we watched in despair and distress as the same recommendations coming out of the US National Academy of Sciences to Ronald Reagan were seen as the kind of immorality you expect of a bunch of academics. I end by emphasising again that we have done well but we are not doing as well now. We have to put our foot back on the pedal and we have to be focused on effective prompt action, not on endless review.