Select Committee on Health Written Evidence


Memorandum by the Medical Foundation for AIDS and Sexual Health (HA 27)

1.   Medical Foundation for AIDS & Sexual Health

  1.1  The Medical Foundation for AIDS & Sexual Health (MedFASH), a charity supported by the British Medical Association, aims to promote excellence in the prevention and management of HIV and other sexually transmitted infections. We work by informing and advising health professionals on excellence in practice, and by briefing policy-makers. We welcome the opportunity to submit evidence to the Health Select Committee's inquiry into new developments in HIV/AIDS and sexual health policy.

  1.2  We would be happy to provide more information or give oral evidence to the Committee. Copies of MedFASH publications mentioned in this evidence can be supplied on request. Our full contact details are at the end of this memorandum.

2.   Summary

  2.1  Our evidence is in two parts, addressing each of the Committee's areas of inquiry in turn.

  2.2  MedFASH believes there are strong public health and economic arguments for allowing access to HIV treatment and care for those who are clearly unable to pay. In our view, restricting access for those ineligible for NHS care is a false economy in relation to individual care, and a major risk to public health. Access to antiretroviral treatment avoids the cost of expensive emergency care, supports HIV prevention interventions both among those who are infected and in the wider community, encourages uptake of HIV testing thus reducing rates of undiagnosed infection, and can radically reduce rates of mother-to-child transmission of HIV.

  2.3  We welcome the White Paper, Choosing Health, and the sexual health Public Service Agreement (PSA) target. These represent a prioritisation of sexual health that is necessary to address the sexual health "crisis" identified by the Health Committee in 2003. Since the Committee's report HIV and STI diagnoses have continued to rise and the ability of services to meet demand has worsened. Our evidence focuses on the learning from, and potential benefit to be gained from, our recent and current projects: developing recommended standards for NHS HIV services and for sexual health services, undertaking a national review of GUM services, and producing a resource by and for GPs on HIV in primary care. All of these should support service modernisation as proposed in the National strategy for sexual health and HIV and in Choosing Health. We remain convinced of the need for increased local investment to expand capacity in sustainable way across a range of settings.


3.   Introduction

  3.1  There are humanitarian, public health, economic and ethical arguments for enabling access to NHS care for those overseas patients with HIV who have no means to pay. We are concerned about any measures which mean refusing treatment and care to vulnerable individuals with HIV.

4.   Is restricting access cost-effective?

  4.1  While the proposed changes to limit access to NHS treatment for overseas patients might appear to be a money-saving measure for the NHS, we query the cost-effectiveness of restricting care to situations defined as emergencies. Timely investment in treatment prevents expensive management of acute illness and repeated emergencies in those infected. According to current UK clinical guidelines, antiretroviral therapy (ART) should be prescribed early enough to prevent a deterioration in health which may not be reversible. Such a deterioration would eventually result in emergency care and inpatient admission. We understand that an average inpatient stay for someone with HIV disease would probably last about 10 days, at a likely cost to the NHS of about £7,500-10,000, and that the average patient with severe HIV disease might be expected to spend a month in hospital during a 12-month period—ie two to three such inpatient stays. With the annual cost of antiretroviral therapy in the region of £10,000, the benefit to the public purse of providing such therapy in a timely way to those with HIV, rather than waiting to deal with emergencies, is clear.

  4.2  Enabling access to treatment should provide further significant economic benefit by reducing transmission of HIV infection to others. Preventing one new HIV infection saves between £0.5 million and £1 million (Department of Health, National Strategy for Sexual Health and HIV, 2001).

5.   How access to treatment and care supports HIV prevention

  5.1  Preventing new infections clearly also has a major public health benefit. People living with HIV can play a major role in prevention. Those receiving treatment and in regular contact with health professionals can be supported to avoid activities which might transmit HIV. In addition, by radically reducing viral load, it is likely that the treatment itself will reduce the risk of transmission if such activities do occur. Hard evidence for this effect of ART has been hard to obtain (apart from mother-to-child transmission), but a case-control analysis of 386 serodiscordant heterosexual partners, presented at the XV International AIDS Conference in Bangkok (July 2004), concluded that when HAART became widely available, a reduction of about 80% in heterosexual transmission of HIV was observed, irrespective of changes in other factors that affect transmission. (Castilla, J et al. Decline in sexual transmission of HIV in heterosexual couples attributable to HAART. eJIAS. 2004 Jul 11;1(1):ThOrB1410, available at—id=2171493)

6.   Impact of restricted access on health promotion and uptake of testing

  6.1  To prevent HIV, health promotion initiatives are important among communities most at risk, and this is rightly a key part of the National Strategy for Sexual Health and HIV. There is international evidence that HIV prevention programmes are more effective when complemented by the availability of social support and medical care for those infected, reducing fear and stigma. If some individuals from the migrant communities most affected by HIV in the UK do not have access to medical care and social support, those communities may be less receptive to prevention messages, less willing to seek HIV testing, and more likely to engage in activities which transmit HIV.

  6.2  Yet it is among these communities that uptake of HIV testing most needs to be encouraged. Of the main population groups in the UK affected by HIV, people from sub-Saharan Africa are least likely to have had their infection diagnosed. Because late diagnosis is associated with ill-health and death, and because it potentially increases the risks of ongoing transmission, the National Strategy aims to broaden access to HIV testing and encourage uptake in this population group. However, for those at risk, there may be little perceived advantage in taking up the option of being diagnosed with a progressive, fatal and highly stigmatised disease if there is no opportunity (or no perceived opportunity) to obtain the treatment which would radically improve quality and length of life.

  6.3  It cannot be assumed that this disincentive to testing would apply only to those individuals who would not be eligible for free NHS care. Migrant communities will include many individuals who are fully eligible, but unaware of the eligibility regulations and aware of the experiences of others in their community, and thus nervous of seeking testing or other healthcare. This may be particularly marked among asylum seekers, who often have a background of persecution and abuse before coming to this country, resulting in fear of interaction with "the authorities". A requirement to prove eligibility on presentation at a healthcare setting could exacerbate such reluctance and put off both those who are, and those who are not, eligible from presenting at all. Thus, a lack of access to treatment for some members of the migrant communities most affected by HIV risks directly undermining the objective of increasing uptake of HIV testing, set out in the National Strategy for Sexual Health and HIV and highlighted more recently as a priority in the Annual Report of the Chief Medical Officer 2003 (Department of Health, 2004).

  6.4  It is appropriate that HIV testing, along with testing and treatment for other STIs, is currently free to all in GUM services, regardless of NHS eligibility. To increase rates of uptake, the availability of

HIV testing should be expanded in a range of settings. We believe the principle of universal free access to HIV testing should apply in all these settings, including primary care.

7.   Prevention of mother-to-child transmission

  7.1  A large proportion of HIV infections in pregnant women in the UK occurs among those from overseas, primarily sub-Saharan Africa. Appropriate interventions before, during and after birth can reduce the risk of HIV transmission from mother to child from 25-35% to under 2%, but in order to achieve this, ongoing medical care and social support is crucial. This support should include access to free formula feed (not currently available to those ineligible for NHS care), to enable HIV-infected mothers to avoid breastfeeding and the associated risk of HIV transmission. The public health rationale for such interventions is very strong, and there are clearly major economic benefits in reducing the numbers of children born in the UK needing lifelong monitoring and treatment for HIV. MedFASH does not believe that any woman in the UK should be denied this treatment or the necessary associated support, regardless of her immigration status.

8.   Access to primary care

  8.1  In most cases, it is hospital services which provide antiretroviral therapy. However, primary care can play an important role in complementing specialist care and the National Strategy for Sexual Health and HIV states the government's intention to expand the role of primary care in relation to HIV and sexual health. More detail on how primary care can complement specialist care in the management of people with HIV is contained in Recommended standards for NHS HIV services (MedFASH, 2003) and in HIV in primary care (MedFASH, 2004). Primary care professionals can provide psychological and practical support to improve patients' adherence to difficult antiretroviral drug regimens, and they can act as a first port of call for those with symptoms which may or may not be related to their HIV or its treatment. This primary care role can help ensure that HIV specialist services are dedicated to the aspects of treatment and care which are truly specialist, making the most cost-effective use of their expertise and pressured resources. We would therefore argue that entitlement to free NHS treatment and care for people with HIV should apply not only in acute hospital settings but also in primary care.

9.   The ethics of restricting access

  9.1  In addition to the public health and economic arguments presented above, there are serious ethical concerns for health professionals. Doctors have a duty of care, and MedFASH would query whether it is ethical (or even in some cases whether it is clinically negligent) to:

    —  withhold treatment and support from a pregnant women which could almost eliminate the risk of her transmitting HIV to her baby;

    —  offer and provide such treatment to a pregnant woman but withhold ongoing treatment for the woman herself and her family;

    —  fail to offer an HIV test to someone presenting with symptoms and seeking to know what is wrong with them;

    —  offer a test for HIV, then withhold treatment which could prevent serious illness and death;

    —  withdraw treatment from an individual (eg if their immigration status changes, reducing their legal entitlement to free care) when their need for it is still as great, especially as their future treatment options would be reduced by cessation of current medication (because of drug resistance); and

    —  provide emergency care but withhold ongoing treatment which could prevent a likely repeat emergency and possible death.


10.   Introduction

  10.1  MedFASH welcomed the report of the Committee's inquiry in 2002-03. We believe that the "crisis" in sexual health continues and, in many ways, has worsened. New diagnoses of HIV and other STIs are still rising, and services are struggling as much, if not more, to meet demand. In partnership with other national organisations, we have continued to argue for sexual health and HIV to have higher priority for planning and funding at national and local level.

  10.2  The publication of the White Paper, Choosing Health, marks a significant change on this front. We very much welcome its prioritisation of sexual health, along with the £300 million additional funding announced to support implementation in relation to sexual health. We believe the guidance to strategic health authorities, issued in November 2004, on the sexual health Public Service Agreement (PSA) target should prove a valuable lever for prioritisation and investment at local level. With the devolution of decision-making and funding to local level in the wake of Shifting the balance of power, such levers are essential. Reversing the current trends in epidemiology and service provision in order to meet the three goals within the guidance is likely to prove a major challenge for PCTs and services.

  10.3  Since the Committee's inquiry, MedFASH has managed a number of major projects. Our evidence is structured around, and draws on the learning from, these projects to make recommendations of relevance for the Committee's new inquiry.

11.   Service standards for HIV

  11.1  Since Committee's last report, which mentioned the standards then in development by MedFASH, the Recommended standards for NHS HIV services have been published and gained the endorsement of the Department of Health, the British HIV Association (BHIVA) and the National Association of NHS Providers of AIDS Treatment and Care (PACT). The standards focus on the patient pathway and delivery of multidisciplinary care through service networks. We have received feedback that they are being used in different ways by service providers, PCTs, SHAs, voluntary organisations and service users groups and we know that in some places they have been used to support local discussions between providers and commissioners about the planning and resourcing of services.

  11.2  However, because of the low priority accorded to HIV in NHS policy, we fear that in many places scant attention will have been paid to the standards, and their use as a tool for service commissioning and improvement is likely to have been limited to those areas where there are local enthusiasts or where HIV is identified as a local priority.

  11.3  It would be valuable to undertake a review of how the recommended standards are being implemented around the country. The learning from this could provide support to SHAs in their performance management of sexual health and HIV, as well as to commissioners and service providers. The intelligence gathered through such a review could also be used to inform an eventual revision and updating of the standards.

12.   HIV prevalence and costs

  12.1  We believe the need for HIV service standards can only intensify. The annual number of new HIV diagnoses has been rising rapidly, reflecting both new infections and some improvement in the rate of diagnosis. The annual numbers of HIV tests performed in GUM clinics increased from 150,000 to 400,000 between 2001-03. We expect this upward trend to continue, especially if there is success in meeting the objective of reducing the rate of undiagnosed infection, as set out in the National strategy for sexual health and HIV and in the CMO's annual report for 2003.

  12.2  With the rise in numbers, total HIV treatment costs are continuing to increase, treatment budgets are under increasing pressure and overspends are not infrequent. There are threats to cap HIV treatment budgets, but we cannot see how such a cap can work for an open access service where the numbers needing treatment are rising rapidly, unless a commitment to provide the optimum treatment (in line with BHIVA guidelines) is abandoned. Open access should not be abandoned, as it encourages the take-up of services in the context of the fear and stigma associated with HIV. There is also a serious risk that these budget pressures will result in disinvestment from other aspects of HIV care which complement and support drug treatments (as set out in the recommended standards) and from local HIV prevention. We hear anecdotally that this is already happening.

13.   HIV service networks

  13.1  The Select Committee, in its report on sexual health, supported the development of HIV service networks and our project work has aimed to facilitate this. In the face of the challenges described above, we think networks are ever more needed. While welcoming the progress that has been made in some parts of the country on network development, we would argue that more support is needed for this.

  13.2  Our more recent work (see below) on standards and networks for sexual health services raises questions about the options for integrated or overlapping networks for HIV and sexual health services. Different solutions may be found to this in different parts of the country, but a co-ordinated approach is important, especially in view of the close links between HIV and some other STIs.

14.   HIV and national sexual health priorities

  14.1  We regret that HIV did not feature more prominently in Choosing Health, nor in the associated announcement of new funding nor the LDP guidance on the PSA target. We hope there will be a recognition at national, SHA and PCT levels that effective implementation of the White Paper, in relation to improving sexual health and reducing health inequalities, must include adequate investment in HIV service provision, including prevention. The Recommended standards for NHS HIV services should support this, along with the forthcoming recommended standards for sexual health services (see below).

15.   Service standards for sexual health

  15.1  Commissioned by the Department of Health, MedFASH has been developing recommended standards for sexual health services, to be published in 2005. These address sexually transmitted infections, contraception, abortion, sexual health promotion and access to psychosexual services, and are organised around how to meet the needs of service users. They are not setting-specific, applying to both primary care and specialist sexual health services, as well as other settings where sexual health needs may be identified or met. They promote an integrated approach to sexual health service provision, and delivery through sexual health networks.

  15.2  In the face of the challenges outlined above, particularly the new LDP guidance requiring 48-hour access for GUM services, a reduction in new diagnoses of gonorrhoea and an increase in uptake of chlamydia testing, the standards should be a valuable tool for providers, commissioners and SHAs. We hope that they will be strongly endorsed and embedded in relevant national guidance and frameworks from the Department of Health, the Healthcare Commission and other relevant bodies.

  15.3  As with the HIV standards, we believe it will be valuable in time to review how the standards are being implemented at local level. With their focus on integrated service provision they should drive modernisation across local health economies, involving a plurality of providers as advocated in Choosing Health.

16.   National review of GUM services

  16.1  Prompted by concerns about the challenges facing GUM services and their capacity to respond effectively, as highlighted in the Select Committee's report, MedFASH has been commissioned by the Department of Health to undertake a two-year national review of GUM services. The review will:

    —  undertake a multidisciplinary assessment of each GUM service in England, highlighting factors both facilitating and obstructing their ability to offer a prompt and high quality service; and

    —  offer recommendations for service improvement and modernisation arising from the assessment, to GUM clinics, PCTs and SHAs; and

    —  provide findings and recommendations from the review to the DH.

  16.2  The first phase of the review was a written questionnaire, sent to all GUM clinics in England in September, about issues to be covered in more depth during review visits. A quantitative analysis of responses from the first 72% of clinics gives the most up-to-date snapshot available of the state of GUM around the country. See Appendix A for a list of topics covered. We have submitted this analysis to the Department of Health, which owns the data, and MedFASH would be happy for it to be shared with the Select Committee.

17.   Primary healthcare

  17.1  Primary care is expected to play a key role in implementing the National strategy for sexual health and HIV and Choosing Health. We agree that the active involvement of primary care is vital to increase capacity and plurality of provision, making services accessible to a broader range of people. The new GMS contract provided an opportunity to increase the provision of sexual health services in general practice but it has become clear that local budgets and priorities do not currently permit much, if any, local commissioning of the contract's national enhanced service for more specialised sexual health services, and few PCTs are even commissioning locally enhanced services for sexual health. We hope that the priorities set out in Choosing Health, and the imperative of meeting the sexual health PSA target, will serve as drivers for a review of the contract and how it can support an enhanced and wider role for GPs in the management of sexual health and HIV.

  17.2  The forthcoming Recommended standards for sexual health services (see above) are explicitly inclusive of primary care, which is a leading provider of contraception and an important provider of other sexual health services. The Recommended standards for NHS HIV services highlight the role of GPs in reducing rates of undiagnosed HIV infection and in dealing with the day-to-day healthcare needs of people with HIV. We hope that commissioners will recognise the relevance of these when planning integrated local services for sexual health, including their contracts for primary care.

  17.3  GPs and primary care professionals have historically been nervous of addressing some aspects of sexual health, especially HIV. However, they may not recognise how transferable many of their existing skills are for dealing with this long-term chronic disease. Building on those skills, they need practical support to improve their ability to undertake a clinical diagnosis of HIV (recognising signs and symptoms), offer HIV testing with confidence, recognise the side-effects of antiretroviral therapy (ART) and understand the implications of a patient's HIV infection or ART for their day-to-day healthcare (such as immunisation, cervical screening, contraception). MedFASH has just published HIV in primary care—an essential guide to HIV for GPs, practice nurses and other members of the primary healthcare team (2003), which is written by GPs to address these needs, in a format appropriate for use in busy primary care settings. It should help primary care providers to implement the recommended HIV service standards.

18.   Service capacity

  18.1  We share the concern about service capacity expressed in the Committee's 2003 report. Despite initiatives in many places to modernise services, it is clear that capacity is still very far from adequate to meet current demand and in many places the mismatch has worsened. From our project work and our contacts with health professionals, it is clear that improving the sexual health of the nation requires a significant increase in service capacity. Increasing the numbers of staff in traditional and in innovative community-based services, as well as changing job roles as part of modernisation, will require significant investment in training. The currently overstretched services need to play a key role in training, and planning for increases in service capacity needs to include provision for this.

  18.2  We welcome the plans for a national public education campaign, as set out in Choosing Health. We believe that, like previous campaigns, this is bound to increase the demand for services, whether to obtain contraception including condoms, for information and reassurance about the risk of STIs or to seek testing for suspected infection. This increased demand will put a further strain on capacity. National campaigns and local initiatives should be synergistic for maximum effectiveness, and as both public education and capacity increases are needed urgently, we hope that they will be planned and resourced in an integrated way at national and local level.

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