HIV and AIDS in the UK

Lord Fowler Excerpts

Thursday 1st December 2011 Lords Chamber

Moved By

[Lord Fowler]

That this House takes note of the report of the Select Committee on HIV and AIDS in the United Kingdom (HL Paper 188).

[Lord Fowler]

My Lords, I am grateful to the authorities for finding room for this debate on World AIDS Day. Perhaps I may first offer some thanks. I thank the committee, which was a mixture of old campaigners— I must be careful how I say that these days, but the noble Baroness, Lady Trumpington, is not here—and Members who were very much new to the area but who made a major contribution. I am delighted to see so many of the committee here, late on a Thursday afternoon, including my noble friend Lady Ritchie. I thank the clerks, Mark Davies and Matt Smith, for their invaluable work and tremendous effort. I also thank all those people who were witnesses, many of whom are the heroes of the struggle against HIV and AIDS—the clinicians, the Health Protection Agency, the department and voluntary organisations, without which, frankly, we would not be able to manage in this country.

It is 25 years almost to the week that we had our first debate on HIV and AIDS in Parliament. It was on Friday 21 November 1986. Reading that debate, I see that, as Health Secretary, I had the support of Michael Meacher for Labour and of Archy Kirkwood for the Liberal Democrats. I even had the support of Bill Cash—I have not often been able to say that in my political career. All the parties combined to make it an entirely non-partisan debate, and so it has remained—as, too, have many of the issues raised in it; public education, treatment and research are still the issues today.

However, there is of course one enormous difference between now and then. At that stage, AIDS was a death sentence. We had neither drugs nor vaccines. In the hospital wards, we found young men dying as doctors and nurses looked on helplessly. That was why we took the decision then to mount a very high-profile public education campaign using television, radio and press, while sending leaflets to every household in the country. If we wanted the public to know of the dangers, it was the only course open to us.

Of course, not everyone at that time agreed. They said that it would offend the public—there was little evidence afterwards that it had done that—and that the Government should stand well clear of such a controversial and, to them, distasteful error. My view and that of my colleagues on the special Cabinet committee that we had set up under the brilliant chairmanship of Willie Whitelaw was that that was not the case. Disease was disease, suffering was suffering, and we had a moral and human obligation to treat sexual disease just like any other and, above all, to try to prevent its spread.

The aim of our Select Committee has been to examine the progress that has been made in the 25 years that have intervened. The greatest change in every meaning of that word is the availability of effective drugs. Antiretroviral drugs have transformed the life expectancy of those with HIV. Provided that people are treated early, there is no reason why they cannot live long lives. In this country we are fortunate that such drugs are freely available, a position that even today after more than 25 million deaths worldwide is still not the case in many parts of the world. In Britain the drugs are there and the death toll has been drastically reduced. Perhaps that is why one of the most common questions that I get asked today is, “Is it still a problem?”. The answer is an unequivocal yes. It is not only a problem, it is a growing problem. The evidence that the Select Committee received on this was utterly clear. Today almost 100,000 people in this country are living with HIV, the number of HIV patients has trebled in the past 10 years, a quarter of those with HIV do not know that they are infected and continue to spread the disease, and although we have drugs to prolong life there is still no cure and no vaccine.

This point should be emphasised; those with HIV, despite the drugs, face a lifetime of treatment and, even worse, the threat of discrimination in jobs and normal social life. The stigma has not been removed. It is not consequence free. A few months ago I received a letter from a man who had just been diagnosed with HIV. He said: “Last year I was diagnosed with the disease and it almost drove me to suicide. I would not want someone else to go through the pain I have. I am now seeing a psychiatrist and talking through how to deal with the disease”. More happily he went on to say that he had now started the medication and his viral level was almost undetectable. That gives some indication of the kind of pressure and suffering that can be caused, even today, to those with HIV.

The real tragedy is that HIV is entirely preventable. Thanks to medical advance, very few babies in this country are now born with the condition. It is not like asthma or epilepsy. To be blunt, we have seen in the past decade a failure in our efforts to reduce the spread. One reason for that failure is clear enough; as a nation we spend more than £750 million a year on drugs to treat HIV, and in contrast the Government spend a miserable £2.9 million trying to prevent it. That is the failure of the policy and the direct and unavoidable challenge to this Government.

The basis of our report is that priority should be given to preventing HIV and AIDS in the United Kingdom. So far, the effort has been wholly inadequate over the past decade and a new priority must now be given to prevention policies if the epidemic is to be stemmed. Our belief is that HIV and AIDS remain one of the most serious public health issues confronting the Government at the start of the 21st century.

In principle I am encouraged by the Government’s proposals to set up a new public health body with a ring-fenced budget; it is an excellent idea, although we will obviously have to ensure that the detail of the proposal lives up to the promise. However, I say to them that it is essential that much greater priority is given to prevention in areas such as HIV. At the moment we have a health system that is financed to treat the casualties but is simply not resourced to prevent those casualties coming about. Before Ministers say that this is simply a plea for money, let me remind them what can be saved by successful prevention policy. It is estimated that a lifetime’s treatment costs between £280,000 and £360,000 for every patient. If we can prevent just 1,000 new infections, we are talking about savings of around £300 million. That is good news for the NHS budget, and it is exceptional news for the people spared a lifetime of treatment.

In entirely practical terms, I refer Ministers to paragraph 229 of our report, where we challenge the local procurement policies at present being pursued inside the health service and propose that antiretroviral drugs should be purchased on a national scale using the purchasing clout of the health service. The Government should reconsider their position and, in so doing, they would do well to read the debate in this House last Thursday, particularly the speech of the noble Lord, Lord Sugar, who made exactly that point about purchasing generally.

Of course, not everything costs vast amounts of new money. One of the undoubted reasons why HIV is spreading is that too many people are not tested; a quarter of the 100,000 with HIV do not know that that is their condition. That is obviously bad for the people who do not test, because the longer it goes on undiagnosed the worse the outcome for the individual. It is certainly bad for the country, because every undiagnosed person represents a public health hazard. It is a sure way of spreading the virus.

We have a series of proposals, but I shall pick out only three. Home testing kits are already available on the internet, but it is a trade that is unregulated and unchecked. The committee took the view that home testing was a sensible extension of testing generally, provided that such tests were accurate and under a licensing system. I am glad that the Government agree with that and I congratulate them on accepting it.

The second proposal concerns general practitioner testing. We should involve general practitioners much more and certainly ensure that people who sign up with GPs for the first time are tested. That point was made this week also by the Health Protection Agency, which points out that of the 680 people with HIV who died in 2010, two-thirds were diagnosed late.

The third area concerns prisons. I am less sure, to be frank, what the Government’s attitude is here, having read their response. We know that the incidence of HIV in prisons is above the average. It would seem almost an automatic step for prisoners to be tested for their own sake so that treatment can be given, and certainly for the health of other prisoners. I will welcome the Minister’s guidance on this. Overall, the aim of policy should be that HIV testing should be a normal part of medical care.

Let me return to 1986 and make a comparison between one feature that has improved markedly and another that has not improved to anything like the same extent. The good news comes from drugs. It was not entirely unanimous inside the Thatcher Government that we should introduce clean needle exchanges for injecting drug users. I could put it more strongly than that. There were fears that it might be seen as condoning criminality and that drug crime would rise. Nevertheless, we went ahead and the result has been consistently successful. Only about 2 per cent of HIV cases in the United Kingdom come from injecting drugs and we have received no evidence from the police that it has led to any increase in criminality.

I add this; we were set up certainly to look at HIV/AIDS in the United Kingdom, but we cannot ignore what is happening in the rest of the world—not only in sub-Saharan Africa but in countries such as Russia and Ukraine. There the HIV epidemic is driven by injecting drug users and is at an alarming level. In Russia, more than one-third of drug users are living with HIV; in Ukraine the position is even worse. Conceivably, our experience here might be of help. Can the Minister say what efforts we are making to make our experience available overseas?

The part of our experience that is less encouraging is that the stigma and discrimination that surround HIV testing have not remotely disappeared. We were told of examples in employment and even of graffiti being daubed on homes and people being forced to move away. I do not say that this is general but I do say that it occurs too often. Noble Lords will know, of course, the teaching of the Christian Church—and, indeed, of every other religion—of love thy neighbour. In that context, it is interesting to look at the Ipsos MORI poll carried out in 2010 for the National AIDS Trust. Respondents were asked whether they agreed with the statement, “If I found my neighbour was HIV positive it would not damage my relationship with them”. Thirty-three per cent strongly agreed with that, while 30 per cent tended to agree, but 23 per cent either disagreed or strongly disagreed. That position had actually got worse since 2007.

The stigma surrounding HIV is one further reason why the whole issue should be tackled early, and we should take relationship education seriously and not be dictated to by the bigots who say that it is all a plot to force explicit sex education down the throats of four year-olds. People who campaign on that sort of falsehood should hang their heads in shame.

It is interesting to see from the same survey that young people in particular are interested in hearing more about the reality of HIV and that many confess to ignorance in this area. In 1986, the campaign was “AIDS: Don't Die of Ignorance”. Of course, the challenge today is different, but no one can dispute that there is a challenge or that ignorance of HIV remains an issue. Frankly, I do not agree with the Government that no new campaign in this area is worth while. There is a real danger that we drift into worse problems by our complacency. Of course, I understand the restraints on spending. It may come as a surprise to the Front Bench that in Margaret Thatcher’s Government we also had restraints on public spending. What we did not have was a budget of £120 billion. Prevention, either against HIV or in any other area, is not one of the most costly programmes for the health service. We need a new prevention initiative. That is good financial investment for the health service, but above all it is a good human investment in that it can avoid so much avoidable suffering and distress.

--- Later in debate ---

[Lord Fowler]

My Lords, it has been an excellent debate and I thank everyone for taking part in it. I repair one omission and give thanks to our special adviser, Anne Johnson, who was absolutely first class in her advice.

I said at the beginning that we had the first debate on HIV/AIDS 25 years ago this month in the Commons, and today’s debate was very much in that tradition, with outstanding contributions. There was general agreement on the serious increase in HIV, the central importance of early testing and the importance of combating the stigma.

I thank the two Front-Benchers—the Minister and her shadow—for their contributions. On the Minister’s reply, to use the famous words of the noble Lord, Lord May, there were quite a lot of reviews in what she was saying, but I agree with her that a ring-fenced budget is infinitely preferable to one that can be raided and which we have had in the past. I am encouraged by what she says about charges for people from overseas and on home testing. I am not quite so encouraged by what she says about prisons, which we will have to revisit. As for what she says about a general campaign in getting this message over, I will say only that, as I count it, the noble Baroness, Lady Massey, called for one, as did the noble Baroness, Lady Gould, with all her experience, and as did the noble Baroness, Lady Tonge. The noble Lord, Lord Gardiner, agreed that there should be one, as did the noble Baronesses, Lady Masham and Lady Healy. For what it is worth, I think that there should be one as well, so I think she might find herself in a slight minority in this House.

The right reverend Prelate the Bishop of Wakefield made a quite outstanding speech on the work of the Church of England, to which I pay tribute. I also pay tribute to Bob Runcie, who was archbishop at the time of the 1986 campaign. I agreed with everything he said about charging for HIV treatment.

The noble Lord, Lord Lexden, made an important speech and rightly reminded us of the importance of Northern Ireland and the challenge there. The noble Lord, Lord Rea, talked about HIV not being a death sentence any more but certainly being a lifetime of medication. The noble Lord, Lord May, in a masterclass on the background, history and origins of HIV, made an outstanding contribution. I hope he is right in his predictions on the development of a vaccine. Above all, I think his message was that there is no reason to take the foot off the pedal at this point, which I hope that the Minister heard very clearly.

The noble Lord, Lord Gardiner, made a crucial point in passing about purchasing policy on drug costs. The noble Lord, Lord Black, underlined the vast importance of involving general practitioners in the work, which, as his example showed only too well, has not always been the case.

There will be future opportunities for talking about these things. If I could put in a commercial for the right reverend Prelate and the noble Lord, Lord May, we have an amendment down on testing for overseas visitors and we might conceivably put the Minister under rather more pressure than she was under this afternoon. I thank her and indeed everyone for an important debate on World Aids Day. I hope that we can renew our efforts to combat HIV, which seems to be the message that has come through from the whole debate.

Motion agreed.