HIV and AIDS in the UK

Lord Black of Brentwood Excerpts

Thursday 1st December 2011 Lords Chamber

[Lord Black of Brentwood]

My Lords, like other noble Lords who have spoken, I warmly welcome the publication of this first-class and comprehensive report from the Select Committee, and I am delighted that we have an opportunity to debate it on such an important day.

If I may, I start with a personal tribute to my noble friend Lord Fowler. For nearly a quarter of a century, his name has been inextricably linked with this issue and he has courageously trod an often lonely path. The Don’t Die of Ignorance campaign was a phenomenally bold move. Looking back on it 25 years later, we can see that it was a seminal moment in the history of HIV and AIDS that without any shadow of doubt saved countless thousands of lives. I say to my noble friend that I was just over 20 when the campaign was launched and was therefore part of a generation of gay men who, without the very stark warnings the campaign contained, could have fallen victim to what was then an untreatable disease. My generation owes an enormous debt to the foresight and courage of my noble friend, those who worked with him and the pressure groups that so assiduously supported him. They gave us the gift of life.

I wholeheartedly endorse the conclusions of this compelling report, in particular the emphasis on early and better testing. There is no doubt, as we have heard so often during this excellent debate, that the issue of late diagnosis is now the greatest challenge in dealing with HIV/AIDS. As the report makes clear, delays in dispensing antiretroviral therapy have grave health implications for the person diagnosed, as well as the risk of onward transmission. As the noble Lord, Lord Rea, touched upon, the figure in the report that 52 per cent of adults diagnosed with HIV in 2009 were diagnosed late is shocking. The problem is even higher among those aged over 50, at over 65 per cent. This is becoming not so much a problem of the young but a problem of the middle-aged.

When treatment of HIV is so effective and easily accessed, with rarely any of the problems of unpleasant side effects that once occurred, there can be no excuse for this. We need, therefore, above all else, to get to the roots of this issue. That is what I would like to concentrate upon, drawing heavily on the report.

There are undoubtedly many causes—after all, this is a very personal issue—but I would like to highlight three. One is certainly education. I do not just mean what is taught in schools, where the report has valuable recommendations on incorporating sex and relationships education into the national curriculum to ensure that children are taught about security in intimate relationships; it is more the importance of education throughout life. As the problem of late diagnosis among those aged over 50 is real and pressing, perhaps we need to find, for instance, novel ways to educate older audiences too, by deploying information through the media and the opinion-forming channels which influence those in middle age.

The second is the role of GPs and health professionals. The report rightly highlights how,

“a major obstacle to more widespread testing seems to be with those who could offer the test”.

In other words, some GPs avoid recommending a test to those who might have HIV because of misconceptions about the need for counselling, time constraints and, above all, stigma.

When I was preparing for this debate I visited the excellent Bloomsbury Clinic within the Mortimer Market Centre in Camden a few weeks ago. I heard a dreadful story there of someone who made his way to the clinic after having been ill for two years with a variety of conditions that should have shouted to his GP “HIV” from the rooftops. This person had never been given a test by his GP; by the time it was discovered, when he found his way to the clinic, full-blown AIDS had set in and the person involved lived barely a few weeks.

That sort of situation, rare though it is, is completely unacceptable. I hope that the recommendations in the report on the need for practitioners to become more confident in identifying those at risk of HIV are acted on without delay.

However, perhaps the single most significant problem remains that of stigma, as many noble Lords have said, most movingly, perhaps, in the examples given by my noble friend Lord Lexden. Of course, there have been remarkable strides in addressing the fear and misunderstanding of HIV, which are the wellsprings of stigma. Enormous credit must go to those many organisations—we have heard about the National AIDS Trust and the Terence Higgins Trust, which do remarkable work—which have fought tirelessly to combat HIV, as well as to the wonderful clinicians who work with patients and give them the confidence to deal with it.

However, there is much more to do and it is absolutely central to the issue of diagnosis, because fear of stigma and fear of testing are inextricably linked. Consider this: in the 2009 People Living with HIV Stigma Index, as we have heard, one in eight HIV-positive people living in the UK reported being physically harassed in relation to their HIV status in the previous 12 months. More than one in five had been verbally assaulted or threatened.

My noble friend Lord Fowler quoted from the survey on public knowledge and attitudes undertaken last year by the National AIDS Trust, which does such fantastic work in this area, about how people would regard a neighbour who was diagnosed with HIV, quoting, quite rightly, “Love thy neighbour”. There is an even more shocking figure in that survey that 20 per cent of respondents disagreed with the proposition that,

“if someone in my own family told me they were HIV positive, it wouldn't damage my relationship with them”.

Therefore one in five would have a more negative view of someone in their own family who was diagnosed.

Four areas of action need to be taken to tackle stigma, and the report very helpfully points the way in some of them. The first relates to healthcare professionals; sadly, as the noble Baroness, Lady Masham of Ilton, said, half of all discrimination reported by people with HIV is in healthcare, particularly in the case of dentists and GPs. Yet those are the very people who should be encouraging testing then, when somebody is diagnosed HIV positive, ensuring that they get swift and effective treatment from experts at the brilliant HIV centres around the country. NHS staff need consistent, high-quality and, above all, continual training about not just the basic facts regarding HIV but the unacceptability—indeed, the unlawfulness—of HIV discrimination, and about the actions that need to be taken to ensure that patients with HIV have the respect and support they deserve. Here, the new NHS Commissioning Board has a vital role to play in requiring anti-stigma training, especially in primary care.

The second area relates to general public information. Undoubtedly, “Awareness of HIV”, in the opening words of the report, is “below the public radar”. What that means is that public understanding of HIV transmission has also decreased significantly in the past decade. The Ipsos MORI surveys commissioned by NAT, which we have heard mentioned today, have over the past few years shown an increase in the number of people believing HIV can be transmitted through kissing. Less that half those questioned cite sharing needles as a possible route, although that is actually the second most common transmission method. These misunderstandings foster stigma because of the link between poor understanding of how the disease is transmitted and a judgmental attitude towards people living with it. Education in schools is obviously vital here, but so are local sexual health campaigns and information to ensure that, at the local level, people have accurate information on how HIV is and is not transmitted.

The third area relates to the media; here, I must declare my interest as executive director of the Telegraph Media Group. Undoubtedly, HIV scare stories in some small parts of the media still foster the fear that is the basis of stigma. While HIV and its ramifications are complex issues to report, not least because they can often become entwined with other emotive subjects such as immigration, there is never an excuse for inaccurate reporting when it can have a terrible human cost. Some progress has been made. The National AIDS Trust, working with the help of the Press Complaints Commission, has produced excellent guidelines for reporting HIV which have started to make an impact. They cover the law, the myths, the vocabulary and issues about testing. They are extremely important in tackling stigma and I encourage their wide dissemination in newsrooms across the media.

My fourth point relates to public policy. The Government's recent mental health strategy has, as one of its six objectives:

“Fewer people will experience stigma and discrimination”.

The Government are, rightly, backing this with significant funding. HIV is in many ways comparable to mental health in terms of conditions that arouse fear and foster stigma: yet there is no strategy or funding in place specifically to tackle HIV stigma and its resulting harms to public health. As the noble Baroness, Lady Gould, said earlier, such a strategic policy could work across departments and disciplines, involving education and teachers, the police, social workers, the media and, above all, healthcare professionals to tackle stigma at its roots.

Of course, money is tight but investment in a strategy of this sort would be perhaps the most cost-effective money the Government could ever spend. Various noble Lords have quite rightly pointed out the simple maths, which I am afraid were never a strong point of mine. I would look at it this way: £1 million spent on an HIV stigma strategy would be recouped by preventing just four of the 2,656 confirmed UK-acquired infections diagnosed in 2010. It is just four; once we get to the fifth, we have started saving. If it were successful, the long-term savings to the public purse could be considerable. Taken together, these four steps could significantly help tackle the stigma, encourage more people to get tested early, help prevent onward transmission of the virus, and ensure a better quality of life for the 100,000 people who will soon be living with HIV.

In my closing comments, I want to mention those 100,000 people. Thanks to effective treatment, there is no reason that they should not lead long and healthy lives. However, we have to recognise that HIV is now a chronic illness, that our understanding is relatively new, and that we do not know what its long-term consequences might be, or the long-term effects of the drug therapies, particularly in terms of other conditions that those living with HIV might contract. If you have HIV, every illness that you get could potentially impact on your treatment regime. As people live longer, this is going to become a much more complex issue to deal with and the model of care, as the report notes, will need to change accordingly. That means a holistic approach to treatment, with regular access to specialists in the field for all those with HIV.

For a number of reasons, some of which I mentioned earlier, GPs may not be the best suited to this task. I am cautious of any moves to give them primary responsibility in this area when it is specialist care which is going to be increasingly vital as the health service copes with an increasingly elderly population living with HIV. Ideally under the new commissioning arrangements, designated centres of excellence for HIV treatment and care should be the ones responsible for ensuring the most effective, convenient, continuous and flexible therapy for all HIV patients. I believe this would be likely to offer better longer-term results in quality of care than the strategy of giving GPs shared responsibility with specialists.

In my remarks today, I have tried to touch on a wide range of subjects. I could go into nearly as much detail as the brilliant report that we are considering. That is a point that underlines how complex this issue is in public policy terms. We are fortunate indeed that this report has given us the opportunity for such an important debate. I hope that in its way it can be as effective as the original campaign 25 years ago—this time not just so much about saving lives, but improving the quality of those lives. That is the great and noble task ahead.