Select Committee on Health Minutes of Evidence

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.


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—"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.


  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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