APPENDIX 21
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.
THE CONSEQUENCES
OF THE
NEW AND
PROPOSED CHANGES
IN CHARGES
FOR OVERSEAS
PATIENTS WITH
REGARD TO
ACCESS TO
HIV/AIDS SERVICES
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 http://www.iasociety.org/ejias/show.asp?abstract—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.
PROGRESS TO
DATE IN
IMPLEMENTING THE
RECOMMENDATIONS OF
THE COMMITTEE'S
INQUIRY INTO
SEXUAL HEALTH
(THE COMMITTEE'S
THIRD REPORT
OF SESSION
2002-03)
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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