Select Committee on Health Minutes of Evidence

Memorandum by the National AIDS Trust (SH 41)


  Rapid escalation of HIV and STI rates indicate that England faces a public health crisis in sexual health. The National Strategy needs to be backed by significantly more resources and greater political commitment to avert further public health harm. The Strategy needs to radically increase its breadth beyond health services issues in order to represent a whole of Government response to this deepening crisis. The Strategy's implementation should be driven forward by a National Service Framework on Sexual Health and HIV so as to ensure that sexual health and HIV services receive adequate priority at local levals.


  1.  National AIDS Trust (NAT) is a registered charity and the UK's leading HIV/AIDS policy and advocacy organisation. We work in partnership with voluntary and statutory sector agencies across the UK to promote policies which are responsive to the needs of people living with HIV and communities most affected by the epidemic. Our work is informed by a human rights framework and we address both domestic and global policy aspects of the epidemic. Our priorities are to address complacency, combat stigma, promote innovative prevention approaches and support greater access to HIV treatments.


  2.  New HIV diagnoses are at record levels. The Public Health Laboratory Service (PHLS) report that the number of people are living with diagnosed HIV has been increasing by 10-15 per cent per annum since 1996, over 33,500 people living with HIV in the UK, and over 4,160 new HIV cases were diagnosed in the UK last year alone. Although treatments prolong life for many, there is growing evidence of drug resistance. HIV drug regimens are complex and difficult, and there is still no cure or vaccine for HIV or AIDS.

  3.  Since 1995, the rates of new episodes of genital chlamydia diagnosed at GUM clinics in England and Wales increased by 105 per cent in females and 98 per cent in males. In 2000, the highest rate of diagnosis was found in the 20- to 24-year age group in males and the 16- to 19-year age group in females. Almost 1 per cent of the 16- to 19-year old female population were diagnosed with chlamydia in GUM clinic in 2000. Similarly, the number of diagnoses of gonorrhoea rose by 102 per cent, from 10,204 to 20,663 between 1995 and 2000, with the steepest increases amongst older teenagers (PHLS).

  4.  In this context, NAT welcomed the publication of the National Strategy but we are disappointed with delays in its implementation and the failure to accord adequate resources to support implementation.


  5.  There has been increasing complacency about sexual health issues throughout the community and this has been reflected at the political level. STIs; and HIV are stigmatised conditions and unpopular causes. Those whose sexual health needs are greatest are often members of communities which experience social exclusion, such as gay men and African and Caribbean communities. Sexual health and HIV were accorded "key priority" status by previous Governments' policies (eg The Health of the Nation 1992) alongside heart disease, cancer, accidents and mental illness. This "key priority" status is no longer enjoyed, and there is no National Service Framework (NSF) planned for HIV and sexual health services.

  6.  Without NSF status, sexual health has poor prospects of achieving recognition as a priority at the local level by newly established Primary Care Trusts which will be required to give priority to meeting NHS targets for NSF conditions such as cancer, mental health and heart disease. NAT recommends that the Strategy's implementation be driven forward by a National Service Framework on Sexual Health and HIV, based on the framework provided by the Commissioning toolkit currently being drafted by the Department of Health and the service standards being developed by the Medical Foundation for AIDS and Sexual Health.

  7.  Implementation needs to be supported by mechanisms which ensure sustained political leadership for the Strategy, including Ministerial involvement in driving implementation forward, national ownership of the Strategy at the highest political levels, and periodic reporting to Parliament on Strategy achievements.

  8.  England's HIV epidemic is rapidly changing due to epidemiological shifts and treatment advances. An approach developed to address today's HIV needs is very unlikely to remain wholly applicable 10 years from now. Therefore regular Strategy evaluation and reviews, for example every three years, are required at national level.


  9.  More central funding tied to the Strategy is required, particularly given that the mainstreaming of HIV budget allocations is expected to lead to a reduction of investment in local HIV and GUM services. GUM services have historically relied heavily on HV ringfenced/earmarked funds for their sustainability, GUM services are in crisis as funding increases have been unable to match the rapid rise in demand for STI and HIV diagnosis and treatment services.

  10.  Within hospitals HIV treatment providers will be increasingly competing for limited funding with other treatment services. HIV treatment costs are escalating as demand increases and treatment regimes become more complex. The London HIV Strategy (Modernising HIV Services in London, NHS November 2001) identified a projected £20 million shortfall in funding for London's HIV treatment services in 2003-04 given current projections in treatment demand.

  11.  Robust performance management measures need to be in place lest HIV services risk being sidelined. Where HIV-specific services are commissioned, preference is likely to be accorded to meeting escalating treatment costs rather than prevention needs. PCTs will need clear directives on the importance of sustaining prevention investments, and Strategic Health Authorities should be tasked with ensuring that targeted HIV prevention work is accorded a priority. The voluntary sector has played a leading role in providing HIV prevention and social care services. Pressures placed on budgets are likely to result in dis-investment in the voluntary sector, which will undermine the capacity to deliver the community-based HIV prevention interventions which have proved so successful to date.

  12.  NAT welcomes the AIDS Support Grant review but is concerned that robust quality protections are in place so that care services are maintained. Allocation of funds to address HIV social care needs should reflect HIV prevalence rather than prevalance of AIDS, to reflect the full range of psycho-social support and care needs which are experienced from the time of inital HIV diagnosis. HIV social care needs of groups such as asylum seekers are increasingly diverse and require the development of services that can respond to cases of complex and multiple needs. We are concerned that the funding environment is such that there will be insufficient HIV-specific social care and support services left to realistically meet the growth in demand. Plans to develop service standards will not necessarily resolve this problem.


  13.  Gay men continue to be the group amongst whom the majority of new HIV transmissions occur in England. Support for local targeted interventions with gay men is essential if the Strategy is to succeed in reducing HIV incidence. Further work is also required to implement a coherent national programme of work targeting African communities, as it is within African communities that new diagnoses are increasing most rapidly. The Strategy's implementation plan should provide a robust performance management mechanism whereby Strategic Health Authorities hold PCTs to account for the commissioning of targeted HIV prevention work with gay men, Africans, people with HIV and other priority populations.

  14.  The premise of the Strategy is that most prevention work will be commissioned locally. There are risks of adopting a localised approach to HIV prevention in relation to groups to be targeted such as Africans and gay men. These target populations may be small in number, dispersed unevenly across regions, and mobile. The implementation plan should provide clear guidance on the joint commissioning arrangements required for ensuring delivery of effective HIV health promotion for target populations in Strategic Health Authority areas. It is NAT's experience that there are very few PCTs planning to commission prevention sevices through consortia, and in high prevalence regions such as London there is a real risk that commissioning will be characterised by fragmentation of approaches due to the adoption of inconsistent prevention priorities and lack of co-ordination between PCTs. This would result in resources being wasted.

  15.  A gap in the Strategy relates to the need for a national response to the potential for growth in the HIV epidemic amongst other ethnic minority populations living in England, particularly Caribbean, Latin American, East European and Asian communities. A national study of service capacity against current and projected needs would be a useful initiative.

  16.  NAT welcomes the Strategy's commitment to a national safer sex public education campaign. Within such a campaign, HIV should be referred to amongst the range of sexually transmitted infections from which people are at risk. However, the overall risk of HIV in the UK should not be exaggerated. Any such campaign should emphasise the relatively greater likelihood for most people of contracting other infections such as chlamydia, gonorrhoea or herpes, and the lifelong implications of these if undiagnosed and untreated.

  17.  Vaccines for HIV and microbicides for HIV and STIs are undergoing human trials and it is anticipated that by the end of the decade partially effective products are likely to be on the market in the UK. As the Strategy purports to provide a 10 year framework it is disappointing that it does not provide any guidance regarding the need to consider the implications of the development of these new prevention options. At a minimum a commitment to resource social research into the implications of technological changes to prevention priorities would be welcomed.


  18.  The Strategy does not fully address HIV treatment and testing access issues. We know from data on late presentations for testing, resulting in unnecessarily high mortality levels, that this is a problem for particular populations. For example, in London one in four Africans and one in six gay men are diagnosed very late in terms of the progression of HIV illness, ie having a CD4 count of less than 100 and thereby being at a stage where they already have very poor immune functioning and will be unlikely to obtain the full benefits of HIV treatments (Modernising HIV Services in London, London HIV Strategy Group Nov 2001). A range of marginalised comunities experience barriers to treatment access including asylum seekers, drug users and prisoners. Barriers to treatment access include fear of stigma; discriminatory practices of health professionals; lack of access to treatment information and regulatory impediments (eg such as NHS rules restricting access to HIV treatments for visitors to the UK).

  19.  The Strategy makes reference to adherence to drug regimes but does not refer to the implications of emergence of drug resistant HIV. It is estimated that over a quarter of new HIV infections in the UK have resistance mutations. The Strategy implementation plan should highlight the significance of drug resistance which threatens to undermine treatment advance, and commit to supporting development of expertise in resistance testing, treatment information and adherence support services to respond to this problem.

  20.  The commitment to reduce levels of undiagnosed HIV is a welcome element of the Strategy. However, the emphasis on testing needs to be complemented by measures supporting HIV positive people to maintain safer sex practices. The Strategy needs to provide stronger recognition of the crucial role that targeted prevention work with HIV positive people should play if reduction of HIV incidence by 25 per cent is to be achieved. This should incude peer support interventions as well as professional advice. Testing in and of itself will not reduce new infections unless placed within the context of a continuum of support for positive people from those who are untested through to those who have been living with a diagnosis for many years.


  21.  NAT welcome the Strategy's recognition of sexual health as a human rights issue. However, the Strategy fails to outline an agenda for action on human rights. The Strategy flags up the relevance of some areas of Government action outside the NHS such as prisons and education, but does not define the mechanisms for ensuring that there is a coherent approach across Government departments. To effectively address these areas in a strategic way over the life of the Strategy, will require ongoing liaison between the Department of Health, the Home Office, Department for Education and Skills, and the Department for Work and Pensions. The Department of Health should work with the Social Exclusion Unit to examine the broader social impacts of HIV and develop a model for cross-departmental co-ordination. We commend the All Party Parliamentary Group on AIDS' recommendations arising from their Human Rights hearings that the Social Exclusion Unit undertake an investigation into all aspects of HIV in the UK (APPG AIDS Hearing Report 2001).

  22.  The Strategy acknowledges that many people with HIV "still suffer prejudice and discrimination" (1.10). Stigma makes prevention work more difficult, acts as a disincentive to testing and treatment, and affects the quality of life of people with HIV. NAT is working with the Department of Health in implementing a national awareness campaign to combat HIV stigma, the "Are You HIV Prejudiced?" campaign. To support this campaign, national policy initiatives should be promoted through the Strategy. Most significantly, the Disability Discrimination Act requires reform to ensure that people with asymptomatic HIV are protected; and there is a need to incorporate HIV within the educational and standards setting work of the Disability Rights Commission. Discrimination is also experienced by carers and associates of people with HIV, but there are no legal protections in place for these groups.

  23.  HIV related discrimination complicates the process of working or re-entering the workforce for many people with HIV. The Strategy implementation plan should require the Department for Work and Pensions to incorporate HIV within broader policy on disability inclusion. Implementation of the Strategy could also link with the Disability Rights Commission's programme of activities addressing workplace disability policy.

  24.  Research conducted by Sigma Research in 2001 found that the most common area in which people with HIV experience discrimination is in the provision of health care services. The Strategy should respond to this through ensuring education and adoption of non-discriminatory professional standards for dentists, nurses, surgeons and GPs.

  25.  Section 28 Local Government Act remains in force and has a negative public health impact by deterring investment in health promotion targeted at gay men which carries positive or supportive messages about sex and sexuality. Litigation in 2000 based on the Scottish equivalent of the clause resulted in suspension of funding to HIV services in Glasgow, thereby demonstrating that Section 28 continues to constitute a threat to HIV health promotion. Liaison with the Department for Transport, Local Government and the Regions is required to ensure that Section 28 is repealed without further delay.


  26.  The National AIDS and Prisons Forum reports that access to condoms, clean syringes, syringe cleansing agents and treatments information is poor within prisons. Condom availability varies between prisons. Prisoners with HIV face particular difficulties in adhering to complex HIV treatment regimes, for example due to lock up restrictions, and lack of availabilty of food at necessary times. The Strategy only mentions (at 3.14) that there is work in progress by the Prisons Service to address communicable diseases. Priorities which could be established by the Strategy include that:

    —  HIV treatment, treatment information and adherence support services be provided to the same standards as apply in the general community;

    —  condoms and needle and syringe cleansing agents be made freely available according to a national best practice standard;

    —  the feasibility of a pilot prison syringe exchange programme be investigated, based on lessons learnt from Spain, Germany, and Switzerland where exchanges have already been succesfully implemented in 17 prisons.


  27.  The Department of Health should work with the Department for Education and Skills to strengthen the Sex and Relationships Education Guidance. Sex and Relationships Education should be a mainstream entitlement for all children and young people rather than an option. The Ofsted report Sex and Relationships issued in April 2002 reports that schools have cut time spent on HIV in sex education, one in four lessons on preventing sexual infections were poorly delivered and 50 per cent of under 16s who were sexually active did not use a condom the first time they had sex. The Schools Health Education Unit concluded in a report issued in 2001 that four out of 10 teenage boys have not heard of a disease called AIDS or HIV. The Unit found only 10 per cent of teachers had talked to pupils in the final year of primary school about it.


  28.  The detrimental impact of aslylum seeker dispersal and voucher policies is continuing despite the announcement of an end to voucher welfare from Autumn 2002 and the phased introduction of changes to the dispersal system. Since the dispersal system was introduced in April 2001 there have been mounting concerns that health and social services outside London are inadequately equipped to meet the needs of dispersed asylum seekers affected by HIV. Of particular concern is the lack of culturally competent family support services and specialist HIV paediatric care services outside London. In addition, the Home Office voucher system for asylum seekers prohibits many from purchasing infant formula and condoms. The Department of Health should act urgently to address these issues in conjunction with the Home Office and community groups.


  29.  Transmission of HIV through injecting drug use is given little attention in the Strategy. The Strategy needs to build on the successes of the last decade whereby the early adoption of harm reduction measures ensured that rates of HIV remain low amongst injectors. There is an oportunity to address issues such as equity in access to needle exchanges; investment in health promotion efforts which address issues of HIV and hepatitis C co-infection, decriminalisation of possession of injecting paraphernalia; and development of quality standards in provision of HIV and hepatitis C prevention and needle exchange services for injectors. Needle use and needle exchange issues are currently falling through the gaps in national public health policy, as are the needs of HIV positive drug users. NAT recommends this be remedied by the Strategy setting an agenda for harm reduction priorities and defining more explicit linkages between the Sexual Health and HIV Strategy, national policy on hepatitis C and the National Drugs Strategy.

June 2002

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