The consequences of fear

How the myth of ‘health tourism’ is harming people with HIV, by Edwin J Bernard

In April 2004, following a public consultation by the Department of Health (DH), the government amended legislation to exclude from free NHS hospital care “anyone who is identified as being in the UK without the proper authority,” including “failed asylum seekers, whose entitlement to free NHS [care] ends once their claim (including any appeals) has been finally refused; overstayers, who entered the UK legitimately but whose visa or entry clearance is no longer valid..; and illegal entrants who have no entitlement to free NHS treatment at all.”¹

This change in policy was primarily a response to media and popular concern over ‘health tourism’ – a concept based on myth not fact – the results of which are now a “public health disaster” according to Yusef Azad, Director of Policy and Campaigns for the National AIDS Trust (NAT), which launched a new report, The Myth of HIV Health Tourism, at last month’s British HIV Association (BHIVA) Autumn Conference.

By pandering to public opinion, the government removed access to HIV treatment and care not only from temporary visitors, but also from irregular migrants (also called ‘illegal’, ‘undocumented’ or ‘unauthorised’ migrants – people who are liable to be deported for issues related to immigration status) – the most vulnerable members of UK society, inevitably some of whom live with HIV.

In April, the High Court ruled that one ‘class’ of irregular migrants – refused asylum seekers – should be considered 'ordinarily resident' and therefore entitled to free NHS treatment, including for HIV. However, a DH appeal against this ruling is being heard at the Court of Appeal later this month, which may change the rules again.²

The myth of ‘HIV health tourism’

The NAT report argues that there is no evidence to demonstrate that ‘HIV health tourism’ to the UK exists. “Allegations of ‘HIV health tourism’”, says the report, “make a serious charge against the integrity and truthfulness of many HIV-positive migrants to the UK, effectively alleging that stated reasons for migration to the UK are at best a pretext and at worst totally untrue. Given the discrimination and marginalisation experienced by many migrants we must question very carefully any claim which might add to social hostility.”

The report also notes, “the claim of health tourism has been central to the Government’s policy of charging refused asylum seekers and other migrants without lawful residency status for healthcare. The Government argues that free NHS care for those without what they deem to be a legitimate reason to migrate to the UK acts as a ‘pull factor’, encouraging illegal immigration and discouraging refused asylum seekers from leaving. Charges for NHS care for certain categories of migrant were introduced to end the ‘pull’ of free NHS care and address the so-called problem of ‘health tourism’.

“Is there really evidence of HIV health tourism which would justify on grounds of immigration policy the singling out of HIV for NHS charges alone amongst all serious or sexually transmitted infections?” asks NAT.

Who began the myth of ‘HIV health tourism’?

From the mid-to-late 1990s, the migration of people from high prevalence countries to the UK began to forever change the demographics of HIV. This change, alongside increased new HIV diagnoses acquired in the UK via sex between men and better survival of people previously diagnosed with HIV due to the advent, in 1996, of potent antiretroviral therapy, led to genuine concerns within the HIV sector about the lack of adequate NHS funding for HIV treatment and care.

These concerns hit the mainstream in 2003, when articles in The Spectator³ and The Daily Telegraph ⁴ began to fan the flame of xenophobic and anti-immigration sentiment, adding to concerns over limited NHS resources, and fears of foreigners bringing disease with them and ‘spreading’ it to the UK population. The articles, which were based purely on conjecture and anecdotal evidence, painted an inaccurate but compelling picture suggesting that: asylum seekers are primarily Black African; that most Black Africans are infected with HIV; that they are already aware of their HIV status; and are misrepresenting their claims for refugee status or political asylum in order to access treatment and care which is either not available in their home country, or which costs more than they can afford.

In fact, the DH, highlighted in its 2003 ‘changes to NHS charges’ consultation, “much media coverage [of health tourism] is confused and inaccurate, e.g. concerns about health care for asylum seekers, who are entitled to necessary hospital care while their claim and any subsequent appeals are considered.”5

Where is the evidence?

The Department of Health’s main justifications for amending the regulations for charging ineligible overseas visitors for hospital care were overburdened health services and inappropriate diversion of taxpayers’ money. However, these justifications were criticised by the House of Lords / House of Commons Joint Committee on Human Rights due to a lack of evidence for either large-scale health tourism or its financial burden on the NHS.⁶

Neither the DH, nor the government, have any reliable data regarding the existence of ‘HIV health tourism’, nor do they have any evidence that it is a significant burden on the NHS. In 2005, Melanie Johnson, then Minister for Public Health, told the Health Select Committee on new developments in HIV/AIDS and sexual health policy, appointed by the House of Commons to examine the expenditure, administration, and policy of the DH: “I do not have any figures to supply you with on this. I concur with the point that it is difficult to measure it, and we do not have reliable information.”⁷

In fact the Health Select Committee found no evidence for ‘allegations of HIV health tourism’, but rather evidence against it: “What little evidence exists in this area in fact seems to suggest that HIV tourism is not taking place. It suggests that HIV-positive migrants do not access NHS services until their disease is very advanced, usually many months or even years after their arrival in the UK, which would not be the expected behaviour of a cynical ‘health tourist’ who had come to this country solely to access free services.”⁸

Nevertheless, the government claims that HIV health tourism does exist, and suggests that it exists in the following way: HIV-positive migrants wait until they are extremely ill before coming to the UK and then immediately attend A&E for treatment: "It is precisely because that kind of immediate access is available that the UK is a popular destination – people out to abuse the system do not seem to wait for weeks or months before seeking out services, they do it as soon as possible after they get here... The Government remains convinced that deliberate abuse of the NHS by overseas visitors, across a range of services, is not just a potential threat but a very real one... That applies as much to HIV treatment as to any other hospital service."⁹

The new report from NAT provides very strong evidence that this is not the case. “If migrants travel to the UK knowing their HIV status with the aim of accessing lifesaving treatment, we would expect data to reveal that migrants with HIV access tests and/or clinical care and treatment soon after arrival,” it says. “In fact the opposite is the case. Recent data from the HPA [Health Protection Agency] supports previous studies showing that there is a significant amount of time between arrival in the UK and HIV diagnosis. In 2007, the average time between UK arrival and HIV diagnosis was almost five years, and this has increased over time – from almost four years in 2005, and four-and-a-half years in 2006.”¹⁰

The report provides a wealth of evidence to robustly argue that there is no evidence to demonstrate that ‘HIV health tourism’ is “a significant or real motivation for migration to the UK” and that there is considerable evidence to demonstrate otherwise, “in particular the lower rates of HIV prevalence compared with country of origin, the long average delays between arrival in the UK and accessing HIV testing and care, and the evidence available on the actual motivations of migrants coming to the UK.”

The costs of late diagnosis

Black African migrants are disproportionately affected by late diagnosis compared with other vulnerable groups, and evidence strongly suggests that this is not linked to recent arrival in the UK. In 2006, more than 40% of Black African adults had their HIV infection diagnosed late, which greatly increased their risk of illness and death in the short-term.¹³

A 2006 BHIVA audit of AIDS-related deaths suggests that some deaths were due to migrants not attempting to access HIV care because of the perception that they were not eligible. In fact, thirteen patients who had received a previous positive HIV test had not been under regular care and re-presented too late for effective treatment. This included one individual who had not returned to receive the test result.¹⁴

So, rather than target the NHS, evidence suggests that, due to a variety of factors, including language barriers and fear and misinformation about their rights to use medical resources, migrants often under-use health services legitimately available to them, and that even migrants who suspect they might be HIV-positive are not testing or accessing care for fear that an HIV-positive test may lead to deportation.¹⁵

A 2005 review from the pan-London HIV Consortium found that just 20 people who were not deemed to be eligible were receiving HIV treatment from the NHS in London.¹⁶ So, even if a small minority of ineligible HIV-positive individuals were accessing HIV treatment, this would cost a tiny fraction of the NHS budget, as it is estimated that HIV prevention, treatment and care costs the NHS £440m per year, less than 1% of the total NHS treatment and care bill.

On the other hand, providing free HIV treatment and care to everyone in the UK is far more cost-effective than denying access to certain ineligible individuals. This is because the cost of treating a neglected condition in an emergency (which the NHS must do, regardless of the ability to pay) is likely to exceed the cost of preventive or maintenance treatment. The annual cost of antiretroviral therapy is now less than £8000; one week’s stay in intensive care can cost more than twice as much.¹⁷ There are also important public health benefits – by reducing infectiousness, HIV treatment greatly reduces the risk of onward transmission, both sexually, and from a mother to her child.

The impact of the myth

The overall impact of the April 2004 guidance, in terms of cost-savings to the NHS is unknown, as the DH and the government are not only unable to produce figures regarding the costs of alleged ‘HIV health tourism’, but are also unable to show that any money has been saved.

Rather, evidence suggests that the costs, in terms of human health and suffering, have been great. Baroness Gould told the House of Lords in March 2008 that: “It is clear that these changes to the regulations are causing serious hardship...These measures actually prevent vulnerable people, including pregnant women, accessing the vital treatment that they need because they cannot afford the charges.”¹⁸

One of the consequences of the policy change has been widespread confusion regarding entitlement to care on the part of healthcare providers, as well as immigrant and refugee communities, exacerbated by a second DH consultation, issued in May 2004, on changing entitlement to primary care, which although they have not yet been implemented, has led to some GP practices excluding eligible patients.¹⁹

NAT has compiled a dossier of case studies²⁰ that highlight further problems resulting from the 2004 guidance. It shows that some people who are entitled to free hospital treatment have had it mistakenly denied by NHS officials and clinicians confused over the regulations. Other case studies show the misery and suffering caused by the regulations: often destitute, those unable to pay upfront have had their treatment delayed, denied, interrupted or withdrawn. In addition, many individuals have been aggressively pursued by debt collectors. These, and other “extremely shocking examples” of the impact of the charging regulations were reported to the House of Lords and House of Commons Joint Committee on Human Rights in 2006.²¹

In addition, the confusion over the so-called ‘easement’ clause – which allows doctors to provide ‘immediately necessary treatment’ regardless of the ability to pay – may also have harmed many HIV-positive migrants, and is somewhat duplicitous: the government is publicising one message – that ineligible individuals are not entitled to free HIV treatment although they are entitled to free HIV testing – and obscuring life-saving information – “that anyone who has already begun treatment, including HIV treatment, on the understanding that they are entitled to receive it free of charge must continue to receive that course of treatment free until it is completed, or they leave the country or are deported. This applies even if it is established that they are no longer eligible for free treatment or, indeed, that they never were eligible. This means that there is absolutely no question of, for example, an asylum seeker who has begun a course of HIV treatment, suddenly being asked to pay for it to continue because their asylum application has been turned down.”²²

Even then, confusion over the actual definition of ‘a course of treatment’ has meant that many clinicians had perceived a pressure to begin their patient on antiretroviral therapy sooner than necessary so as to avoid having to charge for it in the event that asylum was denied. Again, the government obfuscated on this, providing a recent supplementary letter to clinicians clarifying this policy and stating that ‘treatment’ begun prior to the asylum decision does not necessarily mean antiretroviral therapy, but in fact, can simply mean continued monitoring of immune and clinical status due to an HIV diagnosis.

Changing public opinion

At last month’s BHIVA conference, a session on treating migrant populations and their eligibility for care brought into sharp focus the impact of these policies on HIV treatment and care. NAT’s Yusef Azad pointed out that, “the problem is asking healthcare workers to do immigration officers work for them. To use healthcare provision as a lever in immigration policy, when that immigration policy fails, is a public health disaster. It is as simple as that,” he said.

Professor Jane Anderson, of Homerton University Hospital, east London, with a high proportion of HIV-positive migrants, is acutely aware of the many problems they face. She pointed out the paradox of one government department, the Department for International Development committing £6 billion to universal access to HIV treatment and care overseas,²³ but another two government departments, the Department of Health and the Home Office “denying that care free here and also sending people back through various legislation and legal decisions to places where there’s no care. Why can’t we have domestic policies that are the same as foreign policy?” she asked.

The government’s continued insistence on the myth of ‘HIV health tourism’ is calculated political populism. Health and immigration were the two issues of greatest concern before the 2005 election,²⁴ and perpetuating the myth may have won Labour much political capital by appearing to be tough on refused asylum seekers and protecting the NHS from ”abuse”. Indeed, the change in legislation featured in the Labour Party’s 2005 election manifesto.

If public opinion changes, then government policy may soon follow. Yusef Azad told the conference that he hoped the new NAT paper, which is primarily aimed at journalists and politicians, might begin to make a real difference. “I don’t think we should be pessimistic about changing public opinion and public understanding of what’s going on,” he concluded.