DR BARRY EVANS, MR NICK PARTRIDGE, MR JOSEPH O'REILLY, DR PETER WEATHERBURN, DR ALEC MINERS AND MR JOHN IMRIE

TUESDAY 23 JULY 2002

  341. Could I firstly apologise both to our witnesses and to members of the public for the delay in commencement of the proceedings and also for the absence of the Chair, David Hinchliffe. Most of you are aware that the Secretary of State has been making a statement in the House on services for older people which is extremely relevant to a report which the Health Committee is publishing tomorrow on delayed discharges and hence it was felt appropriate that as many members as possible should be in the chamber for that statement. Mr Hinchliffe is trying to speak this very minute. Could I ask the witnesses to briefly introduce themselves by stating their name and their position and relevant expertise?

  (Dr Weatherburn) I am Peter Weatherburn, director of SIGMA Research, a specialist sexual health and HIV health promotion research unit affiliated to the University of Portsmouth. I am based in London.

  (Mr Partridge) I am Nick Partridge. I am chief executive of the Terence Higgins Trust and Lighthouse, the largest AIDS service provider covering prevention, social care, advice and support.
  (Mr O'Reilly) My name is Joseph O'Reilly. I am the deputy chief executive of the National AIDS Trust which works both across the UK and internationally on HIV policy and advocacy.
  (Dr Evans) My name is Barry Evans. I am a consultant epidemiologist at the Public Health Laboratory's Communicable Disease Surveillance Centre based at Colindale.
  (Dr Miners) I am Alec Miners. I am a health economist. I am a visiting research fellow from Brunel University but also a health technology analyst at the National Institute for Clinical Excellence.
  (Mr Imrie) My name is John Imrie. I am a senior research fellow in the Department of STDs at the Royal Free and University College Medical School.

  342. Dr Evans, could I ask you what the main countries are, outside of the African continent, whose epidemics may be affecting the UK?
  (Dr Evans) At this point in time, there is no country other than the African countries making a big impact on the UK new diagnoses, but there are small numbers from countries such as the Caribbean, small but slightly increasing numbers from India and about between 50 and 100 cases a year where people have acquired their infection in Thailand and south east Asia. There are small numbers from those three parts of the world, but parts of the world which historically the UK has had links with. We need to maintain a watchful brief in terms of their impact in the UK. We also need to maintain a watchful brief—historically, we have not had big links but the situation in eastern Europe is fairly dire at the moment with regard to HIV transmission, especially amongst injecting drug users, their sexual partners and it is further spread heterosexually. That has had minimal, if any, impact on the UK as yet, but potentially it is another area where we need to maintain a watchful eye on its potential impact for the UK. Africa has had a major impact. The Caribbean, India, south east Asia and eastern Europe, in terms of the potential, but this is a global epidemic. We must maintain a watching brief in terms of the worldwide pandemic, rather than just viewing ourselves as isolated in some way from the rest of the world.

  343. Some of the specialist service providers who have given evidence to us argue that to cope with the rise in infections from abroad which manifest themselves in the UK we need to provide acceptable, appropriate and culturally competent services. Are there specific difficulties in monitoring HIV from abroad?
  (Dr Evans) Sometimes our main sources of data come from laboratories undertaking HIV testing or from clinicians undertaking appropriate HIV care of patients. The facts that we would like to collect from a public health viewpoint are sometimes not the facts which are necessarily obtained in terms of the history from the patient. Sometimes we do not have all the information which we would like and need to generalise from perhaps having partial data available, data such as when the person arrived in the UK if they were born abroad. It may not be available to the clinician reporting to us.

  344. Can I first of all apologise to the Committee and to the witnesses because I have a constituency engagement at six o'clock. Can I look at the information about the communicable nature of the infection? What do we know about the proportion of those with HIV and AIDS who are infected within the UK and those infected abroad, either with partners normally resident in the UK but infected abroad or those infected by partners not normally resident in the UK?
  (Dr Evans) Our best estimate of this—and it is based on partial data to a certain extent—is that of the new diagnoses made in 2001 about 60 per cent were acquired outside the UK and about 40 per cent within the UK. If you look at people born within the UK and infected abroad, we think about seven per cent of the total are in that category.

  345. Do we know what proportion of those are going abroad?

 (The Chairman took to the Chair)

  (Dr Evans) There would be potentially a higher figure. These are the new diagnoses occurring in 2001. Of people born abroad, infected abroad, it is about 53 per cent. Those constitute the 60 per cent acquired abroad and, of people born in the UK and infected in the UK, about 30 per cent; born abroad and infected in the UK, about ten per cent. Historically, it has not been like that. If you look at the cumulative number of people living with HIV that has been diagnosed currently, it is more a 60/40 breakdown the other way round, so 60 per cent of those currently living with HIV diagnosed in the UK at the moment have acquired it in the UK and 40 per cent outside the UK. The figures are different for recent diagnosis because of the increasing impact of the African epidemic but cumulatively the people living with HIV currently that have been diagnosed, about 60 per cent acquired in the UK and 40 per cent abroad.

  346. Is that comparable with the historic trend, going back to the early 1980s?
  (Dr Evans) If you look way back to the very early 1980s, many of the infections acquired in men who have sex with men were acquired in America or had links with America. This is one of the problems with looking at the pandemic and blaming other countries. It was fairly soon that an epidemic took place in gay men in the UK. The very first cases we had reported to us at CDSC had links with the US. The US epidemic was two to three years in advance of our epidemic so some of the transmission patterns were of people who had acquired it in the US. Then it became endemic. People acquired it in the UK but that pattern is changing now, since the mid-1990s, where we have seen an increasing impact of the worldwide epidemic.

  347. When you say the pattern is changing, do you mean in terms of the origins of the infection or that the problem is generated from within the UK rather than abroad?
  (Dr Evans) Two things. There is an ongoing epidemic within the UK in men who have sex with men. There is a limited amount but small in terms of heterosexual transmission within the UK and the main heterosexual component are people who have acquired their infection within an African context and have migrated to the UK.
  (Mr Partridge) Over the past 15 years, we have been in a position to be able to make considerable public health interventions, particularly for men who have sex with men, for gay men, so there has been a consistency of targeted HIV prevention work for gay men. That is not evident and has been much more difficult to create in the recent past for African communities living in the UK, partly because we have been well aware that most of those infections have happened outside of the UK. Secondly, because it is new and difficult work for us and for other African community organisations that we need to build up experiencing HIV prevention work for African people living here. Thirdly, because there has been a lack of resourcing and a nervousness about doing that work. In a way it should not be surprising that we have seen an ability to contain new infections amongst gay men in a way which was unexpected for many of us in 1985. It is still not good enough for many to say that there is a continuing level of new infections amongst gay men, but at least there are targeted, resourced programmes for gay men. What we need to be able to do is to build up work for and with African communities as the epidemic is changing. Finally, an aspect that ought to be highlighted is that we do see a difference in terms of a time of presentation for testing. If you look at late diagnoses in this country, if you look at people being diagnosed both with AIDS and HIV through accident and emergency or in a hospital setting, well over half of those are people from African communities presenting very late with a very poor clinical outcome. That is another part of the picture that I think we need to paint.

  348. Do you mean recent arrivals in the UK from African communities or from established African communities in the UK?
  (Mr Partridge) It is quite mixed. It can be from people who have been living here for 10 years or more. Otherwise, it is people who have arrived over the past two to five years. The data is not complete because it is difficult to collect that data but all of these people have arrived in the UK for good, practical reasons.

  349. Would it be too simplistic to say that the attitude, the approaches, the policies we have taken towards HIV and AIDS within the UK are robust but that we are part of a wider world?
  (Mr Partridge) That is very fair. We have had a very robust, strong response. Certainly talking to colleagues in the United States of America or Australia much of the work done in this country for and by gay men is seen as a world leader. It is seen as something which has continued to contain the epidemic and it is also seen as being vitally important to sustain. What is much more complex is how we deal with the global impact being seen in this country. What we can do in this country is limited. Once people are infected, you are looking at service provision, support and creation of good networks of care. How we interact and work with DIFD to ensure that we play our role in stemming new infections in sub-Saharan African countries is a key question. The record that is beginning to grow of the UK's investment in those prevention exercises is something that we need to build up. Secondly, how we forewarn ourselves and forearm ourselves to deal with any changes that we know will happen in the years to come, particularly with the expansion of the European Union, is something that we are very conscious of at the Terence Higgins Trust and I know that other prevention agencies are also conscious of that.

  350. That was an oblique reference to eastern Europe?
  (Mr Partridge) Yes.

  Chairman: Could I apologise for the inconvenience of the meeting being called late and for my own late arrival?

  351. I apologise as well. I have to leave in a few minutes to chair a meeting in another room. I wanted to follow up what it means for sex education and public health and a number of things that have been said in answer to the opening round of questions. What things do we have to take into account to take account of the prevalence of HIV infections and the nationality of those infected? What does that mean for health education and sex education and public health in terms of policies to be adopted?
  (Mr Partridge) Firstly, we need to remind ourselves where we can be effective and we can be most effective in containing and preventing as many new infections within the United Kingdom. That needs to be our key task, so ensuring that we maintain good harm reduction policies in needle exchange schemes and injecting drug use; to ensure that the targeted work for gay men is properly linked to any proposed, more general public safe sex campaigns, so that those messages do nto cut across. Thirdly, that we continue to build on sex education in schools so that we have a well educated group of young people as they start their emotional and sexual lives. Then we need to look at how we ensure that the materials for people coming to this country potentially with HIV are appropriate both linguistically and culturally. That is new, ground breaking work, the kind of work that we need to be doing, particularly with African communities at the moment. There are no clear, immediate answers to that, but there is a lot of good work being done by the African HIV policy network in order to be able to address that.

  352. Will that involve targeting particular groups?
  (Mr Partridge) Absolutely. What we have learned amongst gay men is transferable in terms of how we work with what are quite small community groups and often they are fragmented and under resourced, so using different venues, be that where people meet in faith communities, in barbers, clubs and so on. That is work that we are learning about all the time. If you think about what we can do on a general public level, that is particularly based on how we improve, enhance and use the evidence we now have around sex education in schools and colleges, how we then take that forward in the communities most at risk, and sustain that work and make sure it is linked in to a general public understanding so that those not directly affected by HIV and AIDS can support their children, their brothers, their sisters, others in the community to be able to keep themselves safe from infection both from HIV and other STIs, right through to unwanted pregnancy.

  353. How do you feel that current sex education in schools could be better related to men who have sex with men?
  (Mr Partridge) I believe that we have the tools available to us. We know what we can do and in the best schools that is well done and well delivered. We know that there is a correlation between homophobia in schools, homophobic bullying in schools, self-esteem and the risk of HIV infection. The difficulty which covers sex education—I am sure that you have been through this in previous sessions—is how we lift the whole of the school system up to what the best schools are doing. It is now quite clear to me that we have a good evidence base of what works in sex education in schools. It is how we apply that and fund that across the system as a whole.
  (Dr Weatherburn) I would agree entirely. My sense from my research among gay men is that very many of them are in early adulthood and are hopelessly ill equipped to deal with the hazards that they face. It is no coincidence that most of the public health laboratory services' surveillance shows that young gay men are most affected by new infections and this is as a direct consequence of them entering a culture where hazards and risks that are beyond their understanding are encountered in a very immediate way. Sex education in schools does not serve boys very well generally. Boys who enter into a gay culture or heterosexual career are terribly served by it since they have in many cases no reference made to the feelings that they have. In other more shocking cases, they have had the feelings they have directly undermined by the homophobia and prejudice of their teachers or their peers.

  354. What do you feel our Committee might recommend on that issue? We have had many debates in this place about section 28 and the impact that it still continues to have. Is it a factor that teachers are very fearful of entering this whole area for the reasons that we all understand? What are your views on the kind of areas where we might make recommendations that could be of direct relevance?
  (Dr Weatherburn) The review undertaken by the Institute of Education in London last year suggested that section 28 had a huge inhibiting effect on teachers because it was so poorly understood. Very many teachers in private schools understood well that it did not disallow them doing anything and managed to provide adequate sex education for boys, but most do not and are too fearful of going there. A clear reading of the Act does not impede you from doing anything, but that is not widely understood within the teaching service.
  (Mr O'Reilly) Section 28 is a big factor. The fact that it is not understood means that it is read in a very conservative way. If the Committee could see its way to recommending its repeal once again, that would be a very positive move. What you need to do is create an enabling environment in which HIV can be tackled effectively. That will take a variety of forms, one of which is a positive, constructive legislative environment and one of the impediments to that sort of environment now is the existence of section 28. Another key factor is leadership. I think Nick provided a very eloquent list and a compelling testimony of the sorts of things that are required in respect of sex education and the targeting of educational efforts with a view to preventing HIV towards at risk communities. Just like we have seen in respect of Peter's point about the resistance in schools to dealing with sensitive sexual matters, such as homosexuality and sexual practices and behaviours of ethnic minority communities and the reasons why they are more at risk than others, those same impediments and sensitivities exist out in the wider community where decisions in respect to investments in HIV prevention effort are being made. In respect to an enabling environment under the new sexual health strategy, one of the things we have to do is provide good guidance and a good sense of what is required from primary care trusts who by and large will be responsible for making the investment and commissioning prevention effort at a local level. What we do in not providing that leadership is run the very same risk that we have seen occur in our schools and that is provide inadequate leadership and inadequate guidance in respect to what primary care trusts should be doing in resourcing and investing in the very prevention efforts that Nick alluded to earlier.

  355. In terms of those presenting with HIV or being diagnosed, has there been any significant change in the age profile?
  (Dr Evans) There has been very little change in the age profile over the years. There has been a slight aging in injecting drug users but the number of new diagnoses in IDUs is small and there has been an aging cohort effect. The median age in gay men has remained remarkably constant over the last 15 years and that in heterosexuals has been, if anything, creeping up a little bit but not very much, so very little change. We know from new diagnoses in people under 25 and other sexually transmitted infections rates that the amount of unsafe sex, especially at a younger age, is increasing, but we do see new infections across the age spectrum.

  356. On the issue of section 28, to my mind a false impression is given of the real issues in the media, particularly the Terence Higgins Trust and the National AIDS Trust. To what extent have you tried to engage with the media to encourage a more calm, sensible coverage? Clearly, that stalls progress on this issue because people are fearful of the outcry that any progressive move might receive. Have you actively tried to engage with them?
  (Mr Partridge) For almost 20 years. It is a bruising experience at times. I remember bringing together agony aunts from all the newspapers and to her credit Deidre in The Sun has done some excellent work. Lumping the media together as though it is all awful does a disservice to the media. We should not under-estimate the positive impacts of that. The long, ongoing story line with Mark Fowler in Eastenders is something the Terrence Higgins Trust have been consulted on and sadly that is going to come to an end soon but that has had an educative impact reaching an audience that we at the Terrence Higgins Trust would otherwise find very difficult to do. Where it gets very difficult is in knee jerk reactions to particularly sex education in school stories. We do see very mixed, very confused messages being sent out by the media. It is tragically easy journalism to be able to polarise between the views of, say, the FPA and one of the family values groups. It is very simple to get a rent a quote response. Developing a better debate has been far more difficult but we will consistently try to ensure that we get a good, honest airing of the issues so that there is better public understanding of sex education, sex and relationships and what people of any age can do to ensure that their sex lives are rewarding and healthy.
  (Mr O'Reilly) From a health promotion and HIV prevention point of view, the media provides one of those characteristics of a good environment if it is treating the issue properly. It creates a popular culture in which people are aware of HIV and in which we can respond to it very well, but the point that Nick makes underscores the fact that we cannot rely on the media for the HIV prevention message. What we have to do is invest in efforts to make sure that communities most at risk from HIV get an accurate message that is not distorted by the media's interest in portraying the issue in a particular way. Whilst we need to look at the media for open and honest reportage and encourage it to lift its standards in respect of its reportage of HIV, in respect of health promotion and HIV prevention, the message has to be targeted and that targeted message has to be supported by investment which is underscored by real engagement with the communities most at risk, because they are not going to get the message or the honesty that is required from the media.

  357. There has been a lot of work outlined with gay men. Recently, we have had the increase in the Afro-Caribbean population. Could that have been predicted in any way or are we always going to be having to react to an emerging group?
  (Mr Partridge) There has been an awareness in the Terrence Higgins Trust in south London, given the population in south London and what we knew of increasing rates of STIs and of unwanted teenage pregnancies, that there was a clear area of work for us to address. In that sense, yes, it could be predicted. Being able to fund and create interventions we are still not as good at doing in a timely fashion as we should be, because there are always going to be very real sensitivities. These affect the most vulnerable groups in a very vulnerable part of London and it is terribly difficult to ensure that your interventions are not going to be misunderstood, misused and seen as a potential for raising issues of racism, similar kinds of issues that we had right at the beginning of this epidemic, of how it may well raise homophobia which thankfully we have been by and large able to overcome. We have regularly been reigned in by our own timidity matched with a lack of imaginative funding and forward thinking. There are ways forward as we get better working relationships, particularly in south east and east London, and a recognition that we can make interventions. As we get a better tie in between statutory health services and voluntary services we should be able to take those risks. The difficulty is if we get it wrong and some of the more malicious media find out about that and choose to target it. Then it can damage that work for a number of years.
  (Mr O'Reilly) What we know now provides us with an opportunity to look back and see how in the future we might be able to better predict where emerging infections might occur. It also provides us with an opportunity to do more now because what we know at the moment in respect to the emerging epidemic in the African community and the Afro-Caribbean community is that we do not know enough about it. One of the real challenges is to invest in research to better understand the nature of the epidemic in those communities. One of the things that we have in respect to the epidemic amongst gay men in this country is a large amount of social research whereby we understand sexual practices of gay men, how they live their lives, how HIV impacts upon them. As a result, we are better able to understand all of those factors with a view to creating new prevention efforts. There are deficits in respect to what we know about them and we need to make investments to ensure that that information is kept up to date and we know the plethora of concerns. We have much more information in respect to gay men than we do African communities. One of the things that we desperately need in order to make sure that our future interventions, HIV prevention efforts, treatment and care efforts in respect of the African communities, are effective is more information about HIV in those communities and how it is affecting them. That is a very significant challenge because without that information our efforts will not be effective and useful.
  (Dr Evans) In terms of research, in terms of sexual behaviour, that is very necessary, but also we need to maintain sensitive, confidential surveillance systems so that, at the very first signs of an increase, we are able to flag that up as a warning with people doing HIV prevention with communities. I have no doubt that other parts of the globe will impact on the UK. We will see certain communities within the UK more affected by HIV than they have been previously. We need to maintain sensitive surveillance within the UK to flag that up as an issue.
  (Dr Weatherburn) My sense is that research funding and funding to do with HIV prevention follows quite slowly after emerging epidemics. It is still quite a substantial challenge to fund research into gay men's sexual health. It is still almost impossible to fund research into the needs of African communities with HIV or affected with HIV. To try and trace what might happen as a priority for research or for interventions seems somewhat naive in the current climate of funding, both the prevention activity and the research to support it.

  358. What would make it easier?
  (Dr Weatherburn) We need a far more responsive system that allows the expertise around the table to say what might happen and to invest and risk being wrong in looking at how we might stop it happening or at least intervene early enough to minimise the harmful effects. It is still very much the case that HIV follows the fault lines of society. Marginalised groups are affected by HIV. We mainstream the way we provide services around HIV and HIV prevention but it is still an infection that fundamentally occurs amongst groups that are marginalised from society or otherwise socially excluded. We could conjecture now about who else might be infected in the long term but that conjecture would be unlikely to bring you money in the current funding climate.

  359. Dr Evans, you have given us pretty much a broad overview of the origins of the affected groups. What about geographical distribution in the UK?
  (Dr Evans) London has been more affected than other parts of the UK. About two-thirds of the people with HIV are resident in London in terms of having been diagnosed. We have seen over the last couple of years a bigger increase in certain regions outside London, especially in the ring around London, the eastern region, the south east region, Trent in particular, and the north west has been one of the more affected regions in terms of Manchester in particular with its MSM epidemic. We are seeing changing patterns and part of that is as people migrate from London or one can speculate it might be to do with the dispersal of asylum seekers. We do not know that for sure. We do not collect that information but we have seen larger increases out of London in terms of African people being diagnosed.