No vaccine, no cure: HIV and AIDS in the United Kingdom - Select Committee on HIV and AIDs in the United Kingdom Contents

CHAPTER 9: Recommendations

328.  The Government should recognise the scale of the HIV and AIDS challenge in the United Kingdom. Not enough is being done to respond to a steadily growing risk to public health. There are potentially huge cost implications in both the short- and long-term in failing to deal effectively with the epidemic. At a time when public health in the United Kingdom is subject to major reform, the Government should ensure that HIV and AIDS is a key public health priority. (para 34)

329.  Funding bodies, both public and private, should continue to support HIV vaccine research as part of their research strategies. Cooperation with international partners must be central to this work. At the same time, the Government should consult with the pharmaceutical sector to determine whether improvements can be made to existing models of working and regulatory processes to better involve them in efforts to develop a HIV vaccine. (para 43)

330.  Although the successful development of a vaccine is crucial in the longer-term, the response to HIV and AIDS in the United Kingdom must be based on the assumption that none will exist for at least a decade. (para 44)

331.  Further Government support for prevention is required. Prevention should be at the forefront of the response to HIV. This must be reflected in the Government's replacement of the 2001 sexual health strategy. More resources must be provided at national and local levels. The Government should monitor and audit the use of resources so provided, to ensure they are used for the purpose of preventing new HIV infections. (para 55)

332.  We have highlighted the costs of treating HIV, and the long-term savings which could be made through investment in HIV prevention. The current levels of investment in national HIV prevention programmes are insufficient to provide the level of intervention required. (para 62)

333.  Local prevention programmes, and the voluntary sector bodies that deliver them, have played an important role in tackling HIV. Local authorities, health services and other funders should avoid undermining local HIV prevention work when taking budget decisions. The ongoing trend of pressure on local prevention services also underlines the importance of enhanced Government funding for national HIV prevention programmes. (para 68)

334.  HIV awareness should be incorporated into wider national sexual health campaigns, both to promote public health and to prevent stigmatisation of groups at highest risk of infection. We recommend that there should be a presumption in favour of including HIV prevention in all sexual health campaigns commissioned by the Department of Health. (para 72)

335.  We accept that levels of new HIV infection would have been higher without the national prevention programmes, and we support those delivering this work. We feel, however, that more needs to be done to reduce dangerous and risky behaviour that is leading to HIV infection. In part, more funding is needed but, in addition, a broader range of evidence-based approaches are required. (para 78)

336.  Both targeted and national HIV prevention campaigns have an important role to play. Given the concentration of HIV infection in two specific groups, we recommend continued targeted HIV prevention campaigning focused on these communities. This should be coordinated at the national level. (para 84)

337.  We recommend that the Department of Health undertake a new national HIV prevention campaign aimed at the general public. This will ensure that HIV prevention messages are accessible to all of the population. (para 85)

338.  We recommend that those delivering HIV prevention campaigns, whether nationally or locally, should utilise the full range of available media, including internet, social networking and mobile phone applications. We note that national sexual health campaigns, such as Sex: Worth Talking About, have been sufficiently resourced to purchase advertising time with national broadcasters. We recommend that messages around HIV are included in these campaigns in future, ensuring the greatest possible exposure for HIV prevention messages. (para 89)

339.  Whilst we do not doubt the integrity of current evaluation processes, we recommend that the practice of HIV prevention providers commissioning their own evaluation of campaigns be ended. The Department of Health should commission evaluation, ensuring separation from delivery of prevention activity. We also recommend that, once instituted, such independent evaluation activities are used to inform, refine and reinforce subsequent prevention campaigns, providing an evidence-led approach to influencing behaviour. (para 93)

340.  Given the significant cost savings that can be accrued from successful HIV prevention work, the Department of Health should prioritise HIV prevention research. We recommend that the Department establish an advisory committee, to give leadership and coordination to biomedical, social and behavioural prevention research. (para 94)

341.  A range of intensive interventions—including group and individual counselling work—should be delivered for those who are most at risk of either contracting or passing on HIV. This should be set against a backdrop of national campaigns and awareness-raising which is properly evaluated and refined for effectiveness. (para 97)

342.  Discrimination against those affected by HIV is based, at best, on ignorance and, at worst, on prejudice, and we unreservedly condemn it. This underlines the need for a general public awareness campaign on HIV. (para 100)

343.  Given the significant influence of faith leaders in some communities, we recommend that the Government, local authorities and health commissioners build upon work already taking place with all faith groups to enlist their support for the effective and truthful communication of HIV prevention messages. (para 111)

344.  We recommend that the Department of Health ensures continued funding and support for work, building upon that currently delivered by the African Health Policy Network, which aims to develop the knowledge of faith leaders about HIV. Such work is vital in supporting a wider range of interventions which aim to address, prevent and treat HIV within all communities. (para 112)

345.  People living with HIV need to be empowered to become advocates for understanding of the condition, in order to help to address stigma. We understand the importance of peer support networks and voluntary organisations in supporting this work, and recommend that local authorities and other public sector funders acknowledge the importance of this work in their future funding decisions. (para 115)

346.  Progress achieved over recent decades mean that there are now many facets to HIV prevention. We recommend that the full range of available interventions be used to prevent new HIV infections. We call this approach combination prevention. (para 118)

347.  We support the continued provision of needle exchange programmes. The Government should use their influence, both through partnerships such as UNAIDS and their bilateral relationships, to make clear the benefits of needle exchange facilities, and encourage countries whose epidemics are driven by injecting drug use to institute or expand such programmes. (para 125)

348.  Ensuring that as many young people as possible can access good quality sex and relationships education (SRE) is crucial. We recommend that the Government's internal review of PSHE considers the issue of access to SRE as a central theme. Teaching on the biological and social aspects of HIV and AIDS should be integrated into SRE. (para 139)

349.  Whilst acknowledging that the review is yet to complete its work, we recommend that the provision of SRE should be a mandatory requirement within the National Curriculum, to enable access for all. Such education should begin within all schools from Key Stage 1, though this teaching must be age-appropriate. (para 140)

350.  There is an important role to be played by external providers, but we recommend that SRE should be primarily delivered by teachers, who must be trained to deliver this teaching. This training must focus on all aspects of HIV and AIDS, to ensure that teachers are confident on the subject. (para 141)

351.  Procedures developed to limit the transmission of HIV from mother-to-child have been an outstanding success. We recommend that the Department of Health and commissioners ensure that such services continue to be provided as required. For the same reason, we also recommend that local authorities provide free infant formula milk to HIV-positive mothers who have no recourse to public funds.(para 146)

352.  Treatment has an increasingly important role to play in preventing HIV infection. We note research demonstrating the potential for earlier antiretroviral treatment as a preventive measure. We recommend that the Department of Health, National Institute for Health Research, Medical Research Council and other research funders provide support in order to examine the utility of such approaches in the United Kingdom. In addition, the Department of Health should keep policy in this area under review as further research continues to emerge. (para 150)

353.  We recommend that the Department of Health, National Institute for Health Research, Medical Research Council and other research funders support programmes of work which examine the utility of pre-exposure prophylaxis. This research should take place in both in the United Kingdom and in international settings. We recommend that the availability of post-exposure prophylaxis should continue to be determined by clinicians within GUM clinics. (para 155)

354.  We recommend that the Government pursue its plans to commission offender health services centrally, which would lead to better equity and continuity of care for prisoners. (para 169)

355.  Data on HIV in prisons must be improved. The Health Protection Agency should utilise surveillance data newly available to provide a robust estimate of the prevalence and profile of HIV within the prison population. At the same time, a review exercise into offender health services in public prisons is underway. The Government should supplement this with a review of the extent and nature of HIV prevention, testing and treatment services within public prisons, to determine the levels of provision across the country. (para 170)

356.  We recommend that best practice for managing HIV in prisons is made clearer. The Government should commission NICE to produce guidance for the management of offender health, which should include specific protocols for HIV prevention, testing and treatment. (para 171)

357.  In the meantime, the Government should draw up a guidance note to prison governors to outline best practice for managing HIV in prisons. This must stress the need for high-quality, continuous treatment and care; robust testing policies, including routine opt-out testing on entry into prison; and the provision of condoms in a confidential manner. Governors should implement these policies within their prisons as soon as possible. (para 172)

358.  Earlier diagnosis ensures that those infected receive timely treatment, saving money on the treatment costs of more advanced infections and preventing onward transmission of the virus. This is cost-effective in the long-term. We therefore recommend that the Government endorse both the 2008 professional testing guidelines and the 2011 NICE testing guidelines. The policies recommended within those documents, and the recommendations made in the interim Time to Test report by the Health Protection Agency, should be implemented. (para 191)

359.  In particular, HIV testing should be routinely offered and recommended on an opt-out basis, to newly registering patients in general practice, and to general and acute medical admissions. This should begin with high-prevalence areas (where prevalence is greater than 2 cases per 1,000 people). HIV testing should also be made routine and opt-out in relevant specialties where conditions are associated with increased rates of HIV infection, such as TB and hepatitis. Finally, testing should be expanded into the community. Local testing strategies must be put in place to facilitate this. (para 192)

360.  These testing policies should be supported with financial and human resources from commissioning bodies. HIV testing should feature prominently in local needs assessments and testing strategies in high-prevalence areas. The Government must ensure that the performance of commissioners and clinicians is monitored through regularly commissioned audits now, and the late diagnosis indicator in its Public Health Outcomes Framework in future. (para 193)

361.  HIV testing outside of GUM and antenatal clinics must become more widespread. Professionals, most notably general practitioners, must become more confident and competent in offering and administering tests. Training and education are important tools to use to achieve this; they should form an important part of local testing strategies. Such training must incorporate efforts to address HIV-related stigma, and develop understanding of the needs of people living with HIV. (para 204)

362.  Practitioners must be more confident in identifying those at risk of HIV and those with symptoms of infection. Undergraduate training and ongoing professional development for medical practitioners should stress the importance of these skills. This is particularly so for specialists dealing with hepatitis and tuberculosis, where co-infection with HIV is more common. (para 205)

363.  Encouraging people to test, through the provision of education, training and support, can have significant benefits for the public. We support the development of local testing strategies, recommended within NICE testing guidelines. Equipping people with the knowledge and desire to get tested should form an integral part of those strategies. (para 213)

364.  The ban on HIV home testing kits, as laid out in the HIV Testing Kits and Services Regulations 1992, is unsustainable and should be repealed. A plan should be drawn up, in consultation with clinicians, patients, voluntary organisations and professional associations, to license kits for sale with appropriate quality control procedures in place. The licensing regime must make sure that the tests are accurate, and that the process gives comprehensive advice on how to access clinical and support services in order that those who test positive get the care that they need. (para 214)

365.  HIV treatment and care services should be commissioned at a national level, given their high cost and the variation in HIV prevalence nationwide. To ensure commissioning is responsive to differing patterns of need across the country, regional treatment and prevention service networks, appropriately supported and resourced by the Government, should be established. (para 223)

366.  Existing procurement arrangements, where antiretroviral drugs are locally procured, mean that drug prices vary across the country. This should be changed. Antiretroviral drug treatments should be procured on a national scale. This offers the potential for significant savings by making use of the purchasing power and economy of scale of the National Health Service, as well as standardising prices nationwide. (para 229)

367.  The costs of HIV treatment are best managed by purchasing well-tolerated, easily adhered to drug regimens. This reduces the likelihood of incurring the much higher costs of inpatient care which result from poor adherence to treatment. Under national commissioning structures, commissioners must procure drugs that allow clinicians the flexibility to prescribe regimes that best serve this long-term view. (para 230)

368.  Continued monitoring of viral resistance to drug treatments, currently carried out through the UK HIV Drug Resistance Database, is essential. (para 231)

369.  We recognise the concerns arising from the proposed split in commissioning responsibility for HIV prevention, treatment and social care services. We recommend that the Department of Health place a duty upon those commissioning HIV services to support the integration of all HIV services in their commissioning decisions. (para 236)

370.  We recognise the importance of prevention efforts in relation to other STIs, and the role that they can play in preventing the spread of HIV. The integration of STI and HIV treatment services, therefore, is essential for prevention efforts. We share the concerns of those who suggest that the proposed NHS reforms may increase the fragmentation of services. We recommend that the Department of Health place a duty to promote service integration upon those commissioning sexual health and HIV services. (para 237)

371.  HIV treatment and care standards have an important role to play in guiding commissioners and clinicians in a complex area. We recommend that the Government commission NICE to develop treatment and care standards for HIV and AIDS. These should be developed in association with people living with and affected by HIV, along with service providers, drawing upon existing treatment guidelines. (para 247)

372.  Treatment and care standards must take into account psychological and mental health needs, and social care needs more broadly. They should also reflect the value of interventions from healthcare professionals, such as advice on reducing risk behaviours, in preventing onward transmission of the virus. This should happen immediately, as the required expertise is already in place. (para 248)

373.  Charging people for their HIV treatment and care is wrong for public health, practical and ethical reasons. We recommend that HIV should be added to the list of conditions in the National Health Service (Charges to Overseas Visitors) Regulations 1989, for which treatment is provided free of charge to all of those accessing care, regardless of residency status. (para 257)

374.  There are a number of innovative ways of delivering specialist services which should be employed more extensively. These changes benefit patients by delivering treatment more conveniently and closer to home, whilst relieving pressure on specialist clinics and allowing closer working with those in primary care. These include:

  • Home delivery of antiretroviral drugs;
  • Flexible evening and weekend access to services;
  • Patient self-management services, including more extensive support materials;
  • Virtual services such as telephone and email clinics for stable patients; and
  • Nurse-led clinics. (para 267)

375.  Given the increasing proportion of HIV-positive people on stable treatment regimens, commissioners and clinicians (including GPs) should develop, after consultation with patients, guidelines and protocols for the expansion of the above innovations. This can free up human and financial resources for more complex elements of HIV treatment and care. Protocols must, however, provide for specialist consultants to monitor the conditions of all patients at regular intervals. (para 268)

376.  We recommend that the Government work with specialists, GPs and patients to develop a strategy for GPs to take on shared responsibility for the care of HIV-positive patients. This work should include broader consideration of the appropriate boundaries of responsibility between primary care and specialist services. The results should form the basis of longer-term strategies for expanding the role of GPs in the management of HIV-positive patients. (para 277)

377.  Upholding the confidentiality of patients is essential in any medical setting. This is particularly so for a condition as stigmatised as HIV, and in a setting as important as primary care. Confidentiality must be taken seriously, and shown to be taken seriously; general practice staff should make clear to patients the weight they attach to it. This should include clear and easily accessible confidentiality policies, and joint work with specialist HIV clinicians to highlight to patients how important confidentiality is considered within primary care. (para 284)

378.  For better, more integrated HIV treatment and care, general practices and specialist services should work in partnership. We recommend that the Government work with professional associations to commission an audit of information-sharing processes and confidentiality policies in place between practices and HIV specialist clinics, to ensure that good practice is widespread. (para 285)

379.  It is imperative that medical practitioners have the knowledge and skills to manage HIV. Undergraduate teaching and ongoing professional development should, therefore, incorporate sufficient specialist training relating to HIV and AIDS. (para 286)

380.  Commissioners should support managed service networks where they already exist. This should involve the provision of appropriate financial resources and the use of commissioning frameworks. Commissioners elsewhere should consider whether sufficient capacity is in place to move towards a networked model of care. NICE should consider, as part of its remit in developing treatment and care standards for HIV, the role of service networks as a means of efficient and integrated care provision for HIV and AIDS. (para 295)

381.  Research should be funded, either by the Government, National Institute for Health Research[542], Medical Research Council or other research funders, to examine whether service networks would allow for highly specialist care to be delivered more effectively in fewer centres. (para 296)

382.  The United Kingdom has an excellent system of HIV monitoring and surveillance. Monitoring has been part of the front-line response to HIV, with the HPA providing effective delivery, leadership and coordination in this respect. In undertaking reform, the Government must ensure that the surveillance of HIV infections, at a national level, continues to be appropriately resourced and managed. We recommend that Public Health England should coordinate this work nationally. (para 306)

383.  It is essential that Health and Wellbeing Boards are able to draw upon the insights of those commissioning HIV treatment. We therefore recommend that, in areas of high HIV prevalence, the national NHS Commissioning Board be required to provide appropriate representation on local Health and Wellbeing Boards. (para 315)

384.  Health and Wellbeing Boards will be required to coordinate a wide range of public health interventions, many of which affect large numbers of people. It is possible that areas such as HIV, and sexual health more generally, may struggle to compete for attention. We therefore recommend that, in areas of high HIV prevalence, Health and Wellbeing Boards should be required to undertake an annual review of the management, coordination and integration of HIV and sexual health services. (para 316)

385.  Health and Wellbeing Boards will be particularly important for conditions such as HIV, where they provide the opportunity to coordinate disparate service commissioners and providers. We recommend that commissioners be placed under a duty to secure the approval of Health and Wellbeing Boards before finalising their commissioning plans. We also call upon the Government to make clear the funding routes and mechanisms which will ensure that Health and Wellbeing Boards can deliver their programme of work. (para 317)

386.  We recommend that Directors of Public Health should be registered with an appropriate professional body. In addition, local authorities should be required to appoint Directors of Public Health to corporate management positions. More generally, we recommend that the Department of Health should give greater formal definition to the revised role and status of Directors of Public Health. (para 323)

387.  The Public Health Outcomes Framework indicator on late HIV diagnosis will be vital in ensuring that HIV testing is prioritised by local authorities in the new structure. We recommend that it be included in the final adopted set of indicators by the Department of Health, and that it be included in the health premium calculation for all local authority areas. (para 327)

542   An NHS-led research institute, which commissions and funds research. Back

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