Memorandum by the National AIDS Trust
(SH 41)
SUMMARY
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.
NAT
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.
CONTEXT—ESCALATING
HIV AND STI RATES
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.
STRONG LEADERSHIP
IS CRUCIAL
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.
FUNDING SHOULD
MATCH GROWTH
IN NEED
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.
PREVENTION SERVICES
ARE AT
RISK
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.
HIV DIAGNOSIS AND
TREATMENT
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.
STIGMA, DISCRIMINATION
AND HUMAN
RIGHTS
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.
PRISONS
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.
SCHOOL SEX
EDUCATION
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.
IMMIGRATION AND
ASYLUM
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.
DRUGS POLICY
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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