Memorandum by National AIDS Trust (HA
20)
In this submission NAT argue for HIV treatment
and care to be exempted from NHS charges because the case for
charging has not been made on the basis of evidence and because
any charges will have a harmful impact on public health.
NAT also call for a public health impact assessment
of the new charging scheme, for a free health assessment to remain
available for all in primary care, and for action by the Government
to remedy the invisibility of HIV in the Public Health White Paper.
PART I—CHARGES
FOR HIV TREATMENT
AND CARE
I. Introduction
1.1 The National AIDS Trust is the UK's
leading independent policy and campaigning voice on HIV and AIDS.
We aim to prevent the spread of HIV, ensure people living with
HIV have access to treatment and care, and eradicate HIV-related
stigma and discrimination.
1.2 NAT welcomes the inquiry of the Health
Committee into new developments in HIV and sexual health policy.
Eighteen months on from the Committee's important report on Sexual
Health, just a few weeks after the publication of the Government's
Public Health White Paper, and quite probably only a few months
before a general election, this is a timely opportunity for the
Committee to review both progress and continuing challenges in
addressing the country's sexual health crisis.
1.3 In the second part of this memorandum
we raise some wider issues relating to HIV prevention and treatment.
In this first part we concentrate on the charges being introduced
for certain vulnerable groups by the NHS and the implications
for HIV treatment and care and for public health. The charging
issue is not just a small "niche" concern within the
wider sexual health debate. It raises fundamental questions about
how the Government is making its decisions on sexual health policy
and its commitment to the protection and promotion of public health.
II. Background to the charges
2.1 From 1 April 2004 the National Health
Service (Charges to Overseas Visitors) (Amendment) Regulations
2004 have been in force. One effect of these Regulations has been
to end the provision of free NHS treatment and care in hospitals
to anyone who could prove residence of over 12 months in the United
Kingdom. Since 1 April 2004 if you are not "ordinarily resident"
in the UK you will be charged for most NHS treatment and care,
no matter how long you have been in the country. This means that
certain groups such as those who have failed in their asylum application
(which includes for these purposes the appeals process), those
who have overstayed their visas, and undocumented individuals
can no longer access free hospital treatment.
2.2 To accompany the regulations, the Department
has produced guidance for NHS trust hospitals "Implementing
the Overseas Visitors Hospital Charging Regulations".
2.3 There are some exemptions to charges.
Treatment remains free in Accident and Emergency Departments.
There are also certain health conditions which are exempt from
charges. These include serious communicable diseases, such as
tuberculosis, which are subject to public health regulations,
and also all sexually transmitted infections except for HIV.
Only the HIV test and associated counselling are free for all—treatment
and care are not exempt from charges.
2.4 The provision to charge overseas visitors
for HIV treatment and care has been in place for a number of years
but in practice the fact that anyone could get NHS treatment and
care free after 12 months' residence meant there was little difficulty
in providing free HIV treatment and care for all those living
in the UK who needed it. The end of the 12-month rule effectively
introduces a charge for a significant number of people. For the
sake of brevity we refer to "the introduction of charges"
to describe the changes implemented on 1 April 2004 in hospitals
and now proposed also for primary care settings.
2.5 The Government has recently engaged
in a consultation on the extension of these charges to primary
care (deadline for responses was 13 August 2004) and at the time
of writing the Government summary of responses and its conclusion
are still awaited. NAT sent in a submission to the Department
of Health, available at the NAT website www.nat.org.uk—"Eligibility
for HIV treatment and care".
III. The policy context
3.1 NAT supports the aim of ensuring a cost-effective
and responsible use of NHS resources. It also supports interventions
which aim to stop people who have no connection with the UK exploiting
free NHS services (sometimes known as "health tourists").
Our submission will, however, show that there is no evidence of
health tourism amongst those living with HIV and that those most
seriously affected by these charges are those who are not "passing
through" but those who are living here on a settled basis.
3.2 NAT does not take a position on the
Government's immigration and asylum policies other than a general
view that all such policies have to be in compliance with human
rights and international treaty obligations. Our argument against
the charges is based on public health considerations.
3.3 The charges introduced must be judged
on the basis of their impact on the HIV epidemic in the UK.
New diagnoses of HIV are increasing at 20% a year. The number
of people living with HIV in the UK has doubled since 1997 and
now stands at 53,000, with over a quarter unaware of their status.
HIV remains an incurable, serious and life-threatening condition.
3.4 The National Strategy for Sexual Health
and HIV aims, in relation to HIV, to:
— Reduce the transmission of HIV and
STIs
— Reduce the prevalence of undiagnosed
HIV and STIs
— Improve health and social care for
people living with HIV, and
— Reduce the stigma associated with
HIV.
Targets linked to these aims include:
— To reduce by 25% the number of newly
acquired HIV infections by the end of 2007, and
— To reduce by 50% the number of previously
undiagnosed HIV infected people attending GUM clinics who remain
unaware of their infection after their visit by the end of 2007.
IV. Who will be affected by charges for HIV
treatment and care?
4.1 The two groups most seriously affected
by HIV in the UK are gay and bisexual men, and African communities.
Since 1999 the majority of new diagnoses of HIV have been heterosexually
acquired. Of the 3,801 heterosexual diagnoses in 2003 three-quarters
were probably infected in Africa. Of the 35,428 HIV-infected patients
seen for care in England, Wales and Northern Ireland in 2003,
12,688, or 36%, were Black African. In a globalised world, with
increasing mobility of persons, it is not surprising that the
high HIV prevalence found in sub-Saharan Africa is beginning to
have an impact in other regions of the world.
4.2 The Department of Health, NAT and the
African HIV Policy Network (AHPN) have just published "HIV
and AIDS in African Communities: A framework for better prevention
and care". The statistics in the document underline the
seriousness of the epidemic in African communities. Black African
men and women account for 70% of the total diagnosed infections
in heterosexuals and 51% of undiagnosed infections. Diagnoses
are later with serious consequences for efficacy of treatment,
and there are challenges in terms of stigma and discrimination,
clinical monitoring and adherence to drug regimes.
4.3 Failed asylum seekers and undocumented
individuals are a very small proportion of the African men and
women living in the UK. But at present it is the case that the
majority of those being excluded from free HIV treatment and care
are African.
4.4 In other words, the community most significantly
affected by these charges is one with significant HIV prevalence
and with real difficulties in accessing testing and treatment.
The charges only put up another barrier, and send a hostile message,
to a community which should be receiving every encouragement to
address their HIV-related needs.
4.5 Charges mean for the vast majority of
those affected a refusal of care since they will be prevented
from working in the UK and no longer entitled to NASS benefits.
Thus ill-health will be added to severe poverty. This health inequalities
issue must be addressed by the Government.
4.6 Amongst those affected are failed asylum
seekers who the Government accepts cannot for the present return
to their country of origin. It is unjust that the Government accepts
such persons must at least temporarily reside in the UK but denies
them the life-saving treatment they need.
4.7 There is growing evidence that people
from African and other communities who are entitled to treatment
are nevertheless being incorrectly turned away or presented with
charges.
V. The evidence basis for the introduction
of charges
5.1 We do not believe there is a properly
researched and validated evidence base for the introduction of
charges for HIV treatment and care.
"Health tourism"
5.2 The reason given by the Government for
the introduction of charges is primarily to combat "health
tourism", in other words the use of free NHS services by
those with no substantive connection with the UK. The consultation
documents published by the Department of Health gave, however,
no indication of the scale of the problem, which NHS services
are being particularly affected and where, nor of the sources
of their information about the problem.
5.3 With regard to HIV, evidence researched
by Terrence Higgins Trust and George House Trust amongst recent
migrants using HIV services shows that by far the most common
reason given for testing was the onset of symptomatic HIV. If
they had come to the country with the express purpose of accessing
HIV services it is unlikely they would have waited until they
were severely unwell before seeking testing or treatment.
5.4 The evidence to date on HIV and these
vulnerable groups suggests there is no systematic, widespread
or cynical HIV-related health tourism.
Cost savings
5.5 Linked to the argument relating to health
tourism is one based on costs. HIV treatment and care, with the
provision of anti-retroviral therapy for those with a more advanced
stage of the illness, can be costly. But no cost benefit analysis
has been provided comparing the savings from not treating certain
individuals with the cost of dealing with and treating those who
present at A&E departments for want of anywhere else to go
for healthcare.
5.6 In the case of HIV this is especially
relevant. A year of ART can cost between £10,000 and £12,000,
but one day in a hospital bed can cost about £500. Thus it
would take only a couple of days a month in a hospital bed in
A&E to equal, if not exceed, the cost of ART for that person.
Without ART, HIV-positive individuals will get seriously and repeatedly
ill, presenting with ever increasing frequency at A&E departments.
With ART there will be a reduction in the number of inpatient
days at all stages of infection.
5.7 Thus even this narrow calculation comparing
ART with likely A&E care seriously undermines the case for
charges as a cost benefit to the NHS. But any consideration of
costs must also take wider perspective. There is a social and
economic cost to someone becoming increasingly and chronically
sick—they can no longer work; they might be unable to care
for elderly dependants or children.
5.8 The charges, as we go on to show, also
make very likely increased onward transmission of HIV. Seen simply
from the costs perspective we note that the Department of Health
calculates that preventing one onward transmission of HIV saves
between £500,000 and £1 million in terms of individual
health benefits and treatment costs.[3]
To this must be added the costs for treating the expected increase
in TB cases resulting from these HIV charges [see below].
5.9 When considered in the long term
and comprehensively, there is evidence that charges for HIV treatment
and care, far from saving the NHS money, will in fact add to NHS
costs.
An impact assessment
5.10 "Choosing Health",
the Government's Public Health White Paper published in November
2004, commits ODPM and the Department of Health to "ensure
that initiatives and programmes are health inequality `proofed'.
This will involve consideration of whether any policy changes
or remedial actions are necessary to prevent any negative effects
on health inequalities"[4].
5.11 There has not been to our knowledge
any public health impact assessment of the charges introduced
in hospitals from 1 April 2004 nor of those now proposed for primary
care. We welcome the Government's commitment to assess any initiative
on its impact on health inequalities. This will obviously have
to be done before any regulations are introduced to change the
charging regime for primary care. It should also be done for the
charges already introduced in hospitals.
5.12 Given the serious consequences for
public health of the HIV epidemic, and given the commitments of
the National Strategy for Sexual Health and HIV, we are amazed
that such an impact assessment has not as yet been carried out.
5.13 We urge the Committee to recommend
a public health impact assessment for the new charging system
introduced in hospitals from 1 April 2004 as well as for that
now proposed for primary care. Such an assessment should be commissioned
from respected and independent public health experts and be published
in advance of any further changes to the NHS charging system.
VI. The impact on public health
6.1 In advance of any scientific assessment
of impact, there are very good grounds to believe that the charges
introduced are causing, and will continue to cause, harm to public
health in the UK. In other words, not only is there no positive
gain from introducing charges for HIV treatment and care. Serious
harm is going to result.
A deterrent to testing
6.2 DFID in its recently published HIV Treatment
and Care Policy states:
"There is now an international consensus
that treatment and care are essential parts of an effective and
comprehensive response to AIDS. As well as the direct benefits
for people receiving it, access to treatment and care can help
prevention efforts and programmes designed to minimise the impact
of AIDS. Availability of ART in particular gives people a reason
to seek testing, and it might reduce the level of transmission
in a population."
6.3 This is backed by recent research, such
as that in Taiwan where it appears that the government policy
of providing HIV-positive people with free ART reduced the rate
of HIV transmission by 53%.[5]
6.4 The offer of testing without treatment
flies in the face of the Government's own stated policy on the
close relationship between treatment availability and testing
take-up.
6.5 The aim of the National Strategy for
Sexual Health and HIV is to reduce the number of those with HIV
who are undiagnosed, and there is a particularly high proportion
of undiagnosed persons, and of late diagnosis, in African communities.
But, as DFID makes clear, to offer testing, with all its challenges
and trauma, without the option of treatment is to remove one of
the main incentives to test. Whilst NAT would encourage all people
at risk to test, the fact is that within migrant communities there
is an increasing number who question the point of doing so given
the lack of access to treatment.
6.6 A further deterrent to testing is the
impact of the new system on the principle of confidentiality.
If henceforth at GUM clinics patients cannot receive HIV treatment
in an entirely anonymous fashion but have to provide proof of
eligibility there are concerns this will deter even from the initial
free test those fearful of questions about residence.
6.7 Refusal of treatment will deter from
testing. Failure to test will result in continuing and increasing
late diagnosis—at which stage ART can be much less effective
and death more likely. The result is an increase in avoidable
mortality.
6.8 It is also likely that there will
be an increase in transmission of HIV and thus considerable harm
to public health. Neither undiagnosed individuals nor their sexual
partners will be equipped to make informed decisions about their
sexual behaviour. There will be no counselling or support on how
to take precautions against transmission.
6.9 Whether diagnosed or not, the refusal
to provide ART will mean that individuals will remain much more
infectious than they would otherwise be if on the treatment. Such
high infectivity, joined with an absence of ongoing counselling
and considerable personal trauma, is likely to result in an increase
in onward transmission of the virus.
Mother-to-child transmission
6.10 There is an additional danger for HIV-positive
women who are pregnant. In order to reduce chances of "vertical
transmission" of HIV from mother to child it is advised that
the woman has an elective caesarean and/or be given the drug AZT
during pregnancy and birth. If a pregnant woman is unable to afford
any of these options, the likelihood of transmission is high—the
rate of transmission in an untreated population of breast-fed
infants is 25-35%. The use of AZT reduces the transmission rate
to below 1%.
6.11 We know of at least one pregnant woman
who has been refused free temporary HIV treatment to prevent HIV
transmission to her unborn child, and we understand there may
well be others. More generally, in relation to women who may or
may not be HIV positive, we have heard of another woman who fled
when asked to pay charges for ante-natal screening, and of two
other cases where it appears ante-natal care is either not going
to be commenced or is going to be suspended because of inability
to pay bills. Many more of such cases are never noted or reported
by clinicians since they do not get to hear of them. The individuals
are refused at an early stage by the overseas manager in the hospital.
6.12 Given the increasing evidence of
refusal of free ante-natal screening and care to pregnant women,
and the evidence of refusals to provide ante-natal HIV treatment,
there is every likelihood of an increase in avoidable infection
amongst newborn infants.
6.13 Whilst the infected child might then
receive free HIV treatment, the continuing refusal to treat the
infected mother, who will only become increasingly ill, will mean
she will be unable to provide the care and support to the child
that she knows it needs.
TB infection rates
6.14 TB cases have increased by nearly 20%
in England and Wales over the last two years, with London now
a "TB hotspot" and accounting for nearly half of all
UK cases at around 3,000 a year. The recently published TB Action
Plan from the Chief Medical Officer is a welcome and important
step in addressing the threat of TB to public health. It does
not, however, address the problem raised by the failure to treat
HIV in failed asylum seekers, visa overstayers and undocumented
individuals.
6.15 TB is one of the diseases exempt from
charges under the Regulations. There is also a close link between
TB and HIV. The figures are very similar (with about 6,000 new
diagnoses for both conditions and around 400 deaths a year). The
two conditions often affect similar groups. Those with HIV are
also especially vulnerable to TB infection.
6.16 The offer of free treatment for TB
and refusal of free treatment for HIV is already creating problems
with reports of people co-infected with TB and HIV leaving part
way through their treatment when faced with a bill for the HIV-related
aspects of their care. This means people go back into the community
at risk of transmitting both HIV and TB.
6.17 Those who are TB/HIV co-infected are
more likely to develop the active form of the illness and pass
it on to others. The Action Plan states that a person with active
TB will typically infect between 10 and 15 people a year. Thus
the failure to treat HIV, as well as increasing HIV transmission
to others, will result in an increase in TB infections. These
TB infections will be amongst HIV-negative people as well as HIV-positive
people. One recent study has shown that HIV infection dramatically
increases incidence of TB, with a direct increase in those who
are HIV infected but also a doubling of TB incidence in those
remaining HIV negative amongst the group studied.[6]
6.18 To fail to treat HIV is to risk increased
TB infection rates in the UK.
VII. Extending charges to primary care
7.1 The proposed extension of the new charging
regime to primary care will be extremely harmful to the fight
against HIV in the UK. It also undermines attempts to treat other
serious or emergency conditions free of charge.
7.2 GPs remain a vital first port of call
for those concerned about their health. GPs can often diagnose
serious conditions on the basis of apparently minor symptoms,
or at least identify the need for further investigation and tests.
Early symptoms of HIV may well remain undetected if people are
denied access to an assessment in primary care, resulting in delays
in diagnosis with the attendant harm both to the individual and
quite possibly to others.
7.3 Without some health assessment available
in primary care, other conditions which require urgent treatment
might well be missed. At the same time, many with relatively minor
conditions will present at A&E as the one place where they
might have hope of free treatment, overburdening the A&E service
and increasing waiting times and pressure on resources in A&E.
7.4 There is a compelling case for there
to remain a free health assessment available in the primary care
setting and we recommend accordingly.
PART II—OTHER
SEXUAL HEALTH
ISSUES
1.1 We wish to concentrate in our memorandum
on the charging issue since we believe it to be an urgent matter
where the intervention of the Health Committee could make a real
and important difference to public health and HIV incidence.
1.2 We would, however, also comment briefly
on the recently published Public Health White Paper, "Choosing
Health". Many of the concerns raised by the Committee
in their report on Sexual Health are addressed in the White Paper
and there is much to welcome and commend in the Government's proposals.
Renewed efforts in public education, a 48 hour GUM waiting time
target, targets for gonorrhoea and chlamydia will all be of great
benefit. We believe that the White Paper may well increase a concern
for sexual health both in the public at large and amongst PCT
commissioners in particular.
1.3 We must point out, however, the relative
invisibility of HIV in the White Paper—the word is only
mentioned two or three times in the body of the document. There
are no targets relating to HIV prevention or treatment. Though
there is discussion in general of health inequalities, there is
no account of the health needs of gay or black African communities.
1.4 We remain very concerned that the White
Paper will not provide the looked-for leverage to get commissioners
to prioritise the fight against HIV with targeted prevention in
vulnerable communities. It is necessary for PCTs to know they
will be judged against their performance on HIV if we are to see
progress in this area. We hope the Health Committee will raise
with Ministers and departmental officials how they plan to ensure
that HIV is not forgotten in the sexual health agenda, how it
receives adequate funding, and what steps they propose to achieve
the HIV-related goals of the National Strategy.
1.5 NAT plans in 2005 to conduct a survey
of PCTs to assess the resourcing and quality of HIV prevention
work at the local level, information which is not currently available
but which is vital if we are to understand and improve HIV prevention
in England. We would propose to send our findings to the Health
Committee for your information and consideration, and hope this
is material the Committee would welcome and find useful.
December 2004
3 Department of Health "The national strategy
for sexual health and HIV" para 1.21. Back
4
Department of Health "Choosing Health" para 8.3. Back
5
Journal of Infectious Diseases August 15 2004, Chi-Tai Fang,
Jung-Der Wang. Back
6
"HIV and pulmonary tuberculosis: the impact goes beyond
those infected with HIV" Sonnenberg et al, AIDS 2004
Vol 18 No 4. Back
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