House of Commons - Health

Select Committee on Health Third Report

3 Charges for Overseas Visitors for HIV/AIDS treatment

90. The number of newly diagnosed HIV cases is accelerating year on year. There are now an estimated 53,000 cases of HIV in the UK.[105] Latest data indicates that reported diagnoses are increasing by approximately 20% each year.[106] According to the HPA, "this high level of infection is due to sustained levels (and a possible increase) of HIV transmission in men who have sex with men (MSM) and continued migration of HIV-infected heterosexual men and women from sub-Saharan Africa."[107] There were 6,606 new infections diagnosed in the UK during 2003 of which 58% (3801) of these were amongst heterosexuals. Of new heterosexual infections diagnosed in 2003, 2727 (71%) were acquired in Africa.[108]

Background to charges for overseas visitors

The previous situation

91. The concept of charging patients who do not live in the United Kingdom for NHS treatment, while staying here temporarily, is not new. As the Department of Health explained in its memorandum, The National Health Service (Charges to Overseas Visitors) Regulations 1989, as amended ("the 1989 Regulations"), placed an obligation on NHS hospital services to establish whether or not each patient is an overseas visitor, and, if so, to make and recover a charge for any hospital treatment provided, unless the patient was covered by one of the specified exemptions from charges. These exemptions included:

Regulation 4, which specified that where an individual is exempt from charges for NHS hospital treatment then their spouse and children will also be entitled to NHS hospital treatment without charge.

Regulation 4(a)(i), which exempted from charges any person who had come to the UK for the purpose of "engaging in employment as an employed or self employed person", meaning that anyone who comes over to this country on a business trip can access free NHS treatment for both themselves and their family.

Regulation 4(b), which exempted from charges for NHS hospital treatment any person who had spent the previous 12 months in the UK.[109]

The 12-month residency rule

92. Although the provision to charge overseas visitors for HIV treatment and care has been in place for a number of years, previously the exemption through Regulation 4(b) described above exempted from charges for NHS hospital treatment any person who had spent the previous 12 months in the UK, whether legally or illegally. According to the National AIDS Trust (NAT), this meant that "in practice the fact that anyone could get NHS treatment and care free after twelve months residence meant there was little difficulty in providing free HIV treatment and care for all those living in the UK who needed it."

93. According to the Department's memorandum, the 2004 Regulations attempted to tighten up this exemption:

One of the amendments to the 2004 Regulations was to tighten the 12 months residency exemption, which covers those overseas visitors who do not meet any of the other exemption conditions, providing exemption from charges once they have been living in the UK for 12 months. This exemption now specifies that in order to qualify for the exemption the person must have been living in the UK legally for that period. This means that illegal immigrants, failed asylum seekers, visa overstayers and others living here without proper authority cannot now take advantage of free NHS hospital treatment. In order to do so a person must be able to show that they had been living here legally.

94. Although the Department argued that "the 2004 amendment Regulations made no changes to the existing rules on charging overseas visitors for HIV treatment"[110], as the NAT pointed out, "the end of the twelve-month rule effectively introduces a charge for a significant number of people".[111]

In summary, the following groups of people are no longer entitled to free NHS care for HIV/AIDS, where previously they may have been eligible under the 12-month residency rule:

Illegal immigrants
Failed asylum seekers
Visa overstayers
Others living in the UK 'without proper authority'

These groups of people can still seek treatment from the NHS, but they will be charged for it.

Exemptions to this rule

95. There are three instances under which illegal immigrants, failed asylum seekers, visa overstayers and others living in the UK without proper authority will not be charged for NHS treatment. These are:

If they have a serious communicable disease which is exempt on public health grounds. These include TB and all sexually transmitted infections apart from HIV, for which only the initial diagnostic test and associated counselling is free

If they seek treatment in an Accident and Emergency Department; treatment, however, ceases to be free if a patient is admitted to an inpatient ward, or referred to an outpatient service.

If they require compulsory mental health treatment.[112]

"Immediately necessary treatment"

96. Where treatment is deemed by a clinician to be immediately necessary, either to save life or to prevent a condition from becoming life-threatening, then Government guidance stipulates that treatment must be given without delay, irrespective of whether the patient is, or may be, chargeable. The Government's guidance is explicit that, because of the potential risks to both mother and baby, hospital maternity services should always be considered as providing immediately necessary treatment. This could include antenatal HIV treatment for pregnant women where it was considered clinically necessary.[113]

97. However, if it is subsequently established that the patient receiving "immediately necessary" treatment is a chargeable overseas visitor, then according to the Department the guidance states that "the patient should be advised of this as soon as is practically possible, and appropriate recovery action should be taken" to charge them for their treatment and recover costs.[114]

Patients who have begun treatment, whose eligibility status changes

98. The 2004 amendment Regulations also stipulate that where a patient has begun a course of treatment free of charge, that course of treatment remains free until completed, even if their eligibility status changes, for example if an asylum seeker's application for asylum fails, and they become a failed asylum seeker. However, treatment for a different condition, or starting a new course of treatment for the same condition, becomes chargeable when the status of such a patient changes. [115]

Primary care

99. The current legislation on the eligibility of overseas visitors for primary medical services allows GP practices discretion about whether to accept any application to join a practice's NHS list of patients. A person may be accepted onto the list either as a permanent registered patient or as a temporary resident (i.e. where a person is in an area for more than 24 hours but less than 3 months). Where a practice decides not to accept an application, the person can be offered treatment on a private, paying basis. As with hospital services, however, where a healthcare professional believes that treatment is immediately necessary, it must be provided without delay, even if the patient is not registered with the GP practice. It must also be provided free of charge.[116]

100. The Department of Health has recently conducted a public consultation on proposals to bring rules on the access of overseas visitors to free NHS primary medical services into line with those for secondary care services, effectively meaning that illegal immigrants, failed asylum seekers, visa overstayers, and others living in the UK "without proper authority" will be charged for primary care services. Ministers are currently considering the responses to the consultation with a view to deciding the best way forward.[117]

"Health tourism"

101. In recent years there has been growing concern about "health tourism", where people enter the UK from abroad to make use of free NHS services. Although no substantive research has been carried out into this issue, according to the Minister of State for Health, John Hutton, it is a serious problem:

There is absolutely no doubt in my mind and I think in the mind of any other person who has dealings on this subject in the NHS that there is a significant amount of abuse going on.[118]

102. It seems clear that the high levels of HIV infection now seen in this country are attributable, at least in part, to migration from areas of the world where HIV is endemic. However, there is little evidence that HIV sufferers are commonly health tourists. Most reports are isolated to individual cases or "stories" that are difficult to substantiate. A report published by the Centre for Policy Studies devotes a chapter to problems associated with a growing number of HIV+ people coming to live in this country, and gives a case study of a Sudanese woman who migrated to the UK with her family to seek HIV treatment, and who was subsequently granted asylum.[119] Under both previous and current regulations, such a person would of course continue to be entitled to free HIV treatment.

103. There are many different issues surrounding migration, health tourism and communicable diseases, all of which are complex and sensitive. Discussion of "health tourism" is often linked to the wider issues of immigration and asylum. Migrationwatch UK argued in their memorandum to the Committee that "the sexual health crisis in the UK is being exacerbated by the unnecessary and avoidable importation of cases of HIV."[120] There are also issues relating to whether a person's health status, including HIV status, should play a part in adjudicating applications to live in the UK. Migrationwatch UK suggested that testing for HIV should be made a compulsory part of an application to the UK, and that if an individual tested positive "refusal would not be automatic but there would have to be strong reasons to grant the visa".[121] We were informed that 47 other countries, including the USA, Canada, Australia and New Zealand have such testing for applicants.[122] Although early in 2004 newspaper reports suggested that the Government was considering such a move, no official announcements have been made on this subject.[123]

104. Dr Barry Evans of the Health Development Agency told us that if free treatment for HIV was available in the UK to all who sought it, it was perhaps possible that, in future, the UK could become a "magnet" for treatment tourists, although he emphasized that there was no evidence that this was occurring at present.[124] This was also raised by the Minister:

What is clear is that if people think they can come in and, under any circumstances, remain here for free treatment, we would become such a magnet, and that was what we were concerned to deal with. We are a national health service; we are not a global health service.[125]

The Minister also stated in oral evidence to the Committee that "what we are doing is making sure that, when they are here illegally, they are not entitled to remain simply to get free treatment when they are illegal over-stayers." [126]

105. It is vital that the UK does not become a "magnet" for illegal immigrants coming to the country to seek healthcare, for HIV or indeed for any other condition, and it would clearly be financially disastrous for the NHS to be forced to provide a "global health service". However, it is very important not to confuse different issues relating to immigration and HIV treatment. The new rules on charging do not prevent people with HIV from entering the country illegally or from remaining here illegally, as the Minister seemed to imply. Nor do they have any impact on the immigration or asylum process. Instead, they simply have the effect of denying free NHS treatment to those who are in the country without proper authority.

106. It is possible that by removing the potential incentive of free treatment, people with HIV may be less inclined to migrate to the UK. However, on the other hand it could also be argued that these people, including failed asylum seekers, illegal immigrants and visa overstayers, remain in this country because of failings in the immigration system, and that the real issue that needs to be addressed is not what benefits such people should or should not be entitled to, but why they are still in the UK at all.

What evidence is there of health tourism in relation to HIV?

107. Despite John Hutton MP's conviction that "there is a significant amount of abuse going on"[127], no evidence exists to objectively quantify the scale of abuse, either in relation to HIV or more generally. The Department's original consultation provided illustrations of "abuses" that should be stopped, but these only relate to people coming to the UK for a short period to use the NHS, for example during pregnancies to access maternity services, rather than people who are staying in the UK long term "without proper authority".[128]The consultation document gives no specific examples of people migrating to the UK as "health tourists" to use NHS services for HIV or for any other chronic condition.

108. In fact we received some evidence which strongly refuted claims that HIV-infected individuals are coming to the UK to cynically exploit free access to medical care. Memoranda argued that HIV+ people who were infected outside the UK typically sought access to medical care at a late stage,[129] when if they had come to the UK with the express purpose of obtaining medical care it would seem logical for them to seek testing and treatment at the earliest possible opportunity. The Terrence Higgins Trust conducted a small piece of research on a population of 60 HIV+ migrants who were recent users of THT services. Approximately 3% (two people in total) had been diagnosed prior to entering the UK. Only 8% were diagnosed with HIV within three months of entry to the UK. In all at least 75% waited more than 9 months after entering the UK before having an HIV test. One third of people in the cases examined did not have a test until more than eighteen months after entry.[130]

109. The survey also collected data on what had motivated the migrants to take an HIV test. By far the most common reason given for testing was the onset of symptomatic HIV, with 58% testing when they became actively unwell. Almost half of these people (27% in all) fell severely ill before diagnosis, as measured by CD4 counts, emergency admission to hospital, or conditions such as TB. 17% were diagnosed antenatally through routine offers of testing to all pregnant women. Another 15% tested only after the death or diagnosis of a partner. Only one person (less than 2% of the sample) was diagnosed as the result of an unprompted visit to a GUM clinic. According to the THT:

This data militates against the argument that people are coming to the UK in order to obtain treatment. Were this the case, one would expect to see a far swifter progression in the overall data from arrival to testing, rather than three quarters of people testing after nine months or more. …In only one case out of the 60 examined had someone attended at a GUM clinic for sexual health screening without an obvious external trigger, the action most likely by someone who might be already aware of their HIV status and wanting to access services for it.[131]

110. The THT also argued that, although no thorough comparison of requirements to qualify for free healthcare in different countries currently exists, "the UK's nearest neighbour on the European mainland, France, has a much more liberal eligibility requirement than the UK for health services." The THT added:

In France, since 1997, all health services are available free to anyone who can show that they have been living within French territories or dependencies for the past three months and where someone has a serious health condition for which treatments are not available in their country of origin, they cannot be deported back to there. Therefore, if anyone with HIV was intending to migrate to Europe in seek of HIV services, they would be substantially better off going to France than to the UK.[132]

111. It is very important that the UK does not become a magnet for HIV+ individuals seeking to emigrate to this country solely to access free healthcare. However, neither the Department nor any other interested parties have been able to present us with any evidence suggesting that that this is currently the case, or that the introduction of these restrictions on free treatment will actively discourage people from entering or remaining in this country illegally. What little evidence exists in this area in fact seems to suggest that HIV tourism is not taking place. It suggests that HIV+ 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.

Implementing the charges

Difficulties in interpreting the regulations

112. These regulations already seem to causing considerable difficulties. The first problem is that misinterpretation of the complex rules may lead to people who are actually entitled to treatment not receiving it. While the regulations stipulate that failed asylum seekers are not eligible for treatment, unless it has already been started, Dr Paul Williams, a GP who runs a practice in Stockton-on-Tees which deals exclusively with asylum seekers, pointed out that it is difficult to tell when an asylum claim has "failed", as some cases may be subject to appeal or to judicial review. He cited anecdotal evidence of mistakes already being made:

NHS staff have already reported people who are not failed asylum seekers being refused NHS treatment. Members of ethnic minorities or people seeking asylum (who are entitled to free NHS care) will be disproportionately affected….the proposals will lead to confusion and prejudice amongst health service staff, undermining other important initiatives to improve social cohesion, redress inequality and facilitate access to health care for disadvantaged groups.[133]

113. The Terrence Higgins Trust also gave similar examples:

There have been several cases known to us of misinterpretation of the new regulations to refuse treatment to those entitled. This included a pregnant woman, refused antenatal checks despite entitlement, who without skilled outreach work would have been lost to both antenatal and HIV services. There have been other cases where the manner of questioning has discouraged people entitled to services from reattending for them.[134]

Who should implement the regulations? The role of doctors, managers, receptionists

114. There has been and still is considerable confusion over who is responsible for implementing the regulations. Elizabeth Ryan of the Department of Health told us that "what would normally happen is that the patient will be told as soon as possible after first contact if they are likely to be chargeable."[135] However, she did not specify who was likely to be making this decision, or discussing the matter with the patient. In fact, clinicians are often the first point of contact a patient has, but the BMA argued that the complexity of the entitlement regulations makes it difficult for health professionals to assess precisely who is entitled to free care, and stressed that "it should not be part of their job to do so".[136] Several memoranda raised concerns around whether or not it is ethical for doctors to refuse treatment to HIV+ individuals on the basis of their immigration status. The BMA argued that "doctors' ethical training is based on the notion of an ethical duty to respond to 'need'". Its case is based "on humanitarian grounds in that health professionals should not be obliged to refuse care to patients in need because they cannot pay".[137] Dr Paul Williams stated that:

Doctors and nurses have an ethical duty to provide care for their patients, based on assessments of medical need and no other criteria. They are not trained, or professionally inclined, to deny treatment to those in need of it. These proposals conflict with ethical codes of conduct governing health professionals, including the GMC's Duties of a Doctor.[138]

Dr David Asboe agreed with this:

Dr Naysmith: You are acting as a kind of gatekeeper in this situation, are you not? You are deciding who has to pay and who has not. Is that a role that you are happy with?

Dr Asboe: Absolutely not. It is very clear that the General Medical Council says in the Duties of a Doctor, the very first one, that you must make the primary care of the patient your first concern. You must work with your colleagues to ensure that the patient's best interests are served and that is in direct conflict with some of these decisions that are needing to be made.[139]

115. The Minister appeared to make a misplaced assumption that when an HIV+ patient was seeing a doctor, that doctor would already know their residency status and thus whether they were entitled to free treatment or not, as "you are not talking about somebody coming in through an A&E clinic here. You are talking about somebody turning up for a booked appointment".[140] However, a universal characteristic of sexual health and HIV services is that they are open-access, so a person should be able to walk in off the street and have access to a doctor without a referral from elsewhere. Another unique feature of sexual health and HIV services, which the Minister did not take account of, is that they are run on a highly confidential basis. Patients are asked for only a minimum of personal information, and are informed that they do not even have to give their real name or an address if they do not wish to. The information held on patients within sexual health and HIV services is not disclosed to anyone, not even their GP without their consent.

116. The Minister emphasised the importance of the role of overseas patient managers, who have a great deal of expertise about the regulations and their implementation. She argued that:

There is no reason why those who are managing the clinic should not be having a regular dialogue with the overseas visitors managers. If they are not doing so, obviously, they will necessarily be short of understanding and guidance[141]

117. However, Pam Ward, an overseas patient manager in Surrey, reported considerable difficulty in working with sexual health and HIV services:

The consensus of a lot of overseas managers is that actually to get access into information in GU clinics and sexual health clinics is taboo: we are not allowed in. There is a lot of hostility against overseas managers even to want dialogue with people in GU clinics[142]

118. If the regulations are extended into primary care, the initial assessment of patients eligibility may well end up being carried out by GPs' receptionists, in the absence of professional overseas managers. However Dr Paul Williams also argued that to determine a patient's need for free treatment under the communicable diseases exemption, or to assess whether or not someone has an "immediately necessary or life-threatening" problem, a medical assessment is needed. In Dr Williams' view "reception staff are most likely to be the people turning away patients", despite the fact that they are unqualified and do not have the skills to make this determination.[143]

119. Dr Asboe argued that although the guidance states that if treatment is deemed to be necessary in order to save life or to prevent a life-threatening illness, then treatment must be offered immediately, as discussed above, there is little clarity around this rule, which is likely to lead to clinicians interpreting the rules differently. [144]

120. We have received evidence that NHS staff are finding it very hard to implement the new regulations in so far as they affect HIV patients. Because of the highly confidential basis on which they are run, sexual health and HIV services may be reluctant to give overseas patient managers access to their patients, meaning that the difficult job of determining eligibility falls to doctors or receptionists. Receptionists are unqualified to make the clinical decisions that may be necessary to determine whether a person needs free treatment; and doctors, when required to adopt a "gatekeeper" role in determining a patient's eligibility for free treatment, feel an irreconcilable conflict with their primary duty to care for the patient.

"Immediately necessary treatment"

121. A particular difficulty centres round the provision within the regulations for "immediately necessary" treatment. Guidance issued by the Department stipulates that any "immediately necessary" treatment for a life-threatening problem must be provided regardless of a person's eligibility for free treatment, and attempts should be made to recoup the costs later. In oral evidence to us, the Minister frequently cited this "easement clause", which enables clinicians to make decisions about providing "immediately necessary" treatment to patients on the basis of their clinical need.

122. However as far as we can see, from studying the Department of Health's written evidence as well as others', this does not, as the Minister seemed to imply, provide clinicians with total freedom to provide treatment free of charge to anyone with HIV, regardless of their eligibility status. As Dr David Asboe pointed out to the Committee, the definition of "immediately necessary" treatment is very vague and may be interpreted very differently by different clinicians:

You may have one clinician in one hospital who takes a criterion of a CD4 count of under 200 - so a patient is very immune compromised, but not at this very point in time having a life-threatening illness - who will make the decision that treatment is warranted under those circumstances and you may have a clinician in a different hospital or on a different day who makes a different assessment.[145]

123. We have not seen any evidence to suggest that clinicians feel justified in using the clause of "immediately necessary" treatment for "a life threatening problem" to provide regular, ongoing outpatient HIV treatment to ineligible HIV+ people who are otherwise well. And, even if the clause was interpreted in this way and treatment was begun, as was made clear by Elizabeth Ryan, moves would be made to recoup charges as soon as possible:

What would normally happen is that the patient will be told as soon as possible after first contact if they are likely to be chargeable. In an emergency, if somebody has turned up and they are clearly very ill and treatment needs to start straight away, then that treatment will happen, the treatment will start straight away, so there may be a day or two before it is possible to ascertain all the circumstances, to establish that they are chargeable, but you will not have somebody going weeks and weeks into treatment and running up a bill of thousands of pounds and then suddenly being told they have got to pay. That will not happen.[146]

124. The THT argued that many of those who fall into one of the categories of overseas visitors who are no longer eligible for NHS treatment for their HIV are effectively destitute. According to the THT, NHS staff have told them that "people may be charged but if they can't pay, we won't stop treating them". However, there have already been instances of debts of this kind being handed over to debt collection companies to pursue.[147] Peter Nieuwets, a Commissioning Manager from West Sussex, described disputes over this policy resulting in "an enormous amount of tension within hospitals between administration and medical staff: Treatment or payment? Who has the loudest voice within the hospital?".[148] If patients begin HIV treatment and then stop it, either because it is withdrawn by the Trust, or because they are told they have to pay and cannot afford it, this has the extremely serious consequence that drug-resistant HIV will develop.

125. During oral evidence the Minister answered almost all of our arguments by repeating that, although HIV treatment is no longer free for people living in this country without proper authority, "there is still provision for easement by individual clinicians under individual circumstances, and at the end of the day, the decisions are the clinician's"[149]. We have not seen any evidence to suggest that the Department intended the clause for "immediately necessary" treatment to allow clinicians to provide free routine HIV care to all HIV+ patients, regardless of eligibility, and nor does our evidence suggest that clinicians and Trusts are interpreting the regulations in this way. If it is the Department's intention that the regulations be interpreted this way, we recommend that it issues guidance to this effect immediately. However, we do not believe that the Department does intend the regulations to be interpreted in this way. Rather, it seems that regarding HIV, this easement clause provides clinicians with only very limited flexibility to provide treatment for ineligible HIV+ patients once they become severely unwell or their immune system is significantly weakened, rather than enabling them to prevent this deterioration in the first place.

Financial implications

126. The Government has made no estimates of the number of people likely to be affected by these changes, and was not even able to give the Committee a rough estimate:

Chairman: Has the Government any estimate of the numbers of people who are now no longer eligible for treatment as a result of the change in the 12-month exemption?

Miss Johnson: No, we do not.

Chairman: You do not have an estimate of the numbers affected by this change? Have you access to anybody else's estimate as to the numbers affected? Have no voluntary organisations put to you the numbers that are affected? You have no knowledge whatsoever, no guesstimates?

Miss Johnson: No, no. Obviously, people who are being expelled are a matter for the Home Office as well, so that is not an issue for my Department.

Chairman: I appreciate that, but you are in contact with other government departments, obviously, and in conjunction with them, there has been no estimate from them as to the numbers that might be affected?

Miss Johnson: No.[150]

127. It is clear from their consultation document that resource implications have been a key motivation for the Government in introducing these reforms:

The current Regulations have some loopholes which the proposals in this consultation document are intended to close. This will help hospital staff, but more important it will ensure that money provided by UK tax payers for the NHS is not diverted to health care for those who are not resident in the UK but have taken advantage of gaps in the current rules.[151]

128. However, despite this, no cost-benefit analysis of the financial impact of these changes has been carried out, as the Department explained in correspondence with the Committee Clerk:

The Committee…asked about analyses of costs or potential savings arising from the changes to the charging regimes for overseas visitors, particularly in relation to HIV/AIDS services. As regards the hospital charging regime, NHS trusts have never been required to submit statistics on the costs of treating overseas visitors (a proportion of whom will, at any rate, be entitled to receive hospital treatment at no charge), so there is no baseline from which an estimate of savings could start.[152]

129. The Minister confirmed to the Committee that no cost-benefit analysis had been carried out:

John Austin: I understand that, in the correspondence between the Committee and your Department, the Department has made no assessment of the likely cost or cost savings of introducing the changes to charges for overseas visitors. Is that so?

Miss Johnson: I have already explained that there are no figures about the numbers of overseas visitors being treated.[153]

130. While the Department itself has no data in this area, other estimates have been made, although there appears to be little consensus about the scale of the costs. According to a BBC article from May 2004, figures from CCI Legal Services, a debt collection service, put the cost at anything between £50m and £200m each year, and a leaked report from Newham General Hospital in East London suggested health tourists cost that one trust £1m a year. The article continues:

However, a subsequent study has found that the true figure may be much lower. "Over the last three months, the number of patients identified as ineligible is 17," says Ian O'Connor, its director of finance. "The cost of this treatment over that period is £32,000." With an annual budget of £100m, this figure is practically negligible.[154]

131. While it could be argued that any cost savings to the NHS, however large or small, would be of benefit, all policies have practical implementation costs, as Professor Alan Maynard, a leading health economist at York University, argued in the same BBC article:

I think the department itself is creating the headlines…What we need is much better data and evaluation of whether it is worthwhile going to extraordinary lengths to pursue marginal amounts of money. To spend a lot of money pursuing a relatively small amount of money would be unwise and we really have to look very carefully and evaluate this policy much more carefully than has been done to date.

The costs of treating HIV

132. Anti-retroviral drug therapy has revolutionised the treatment of HIV in recent years, but is expensive, costing between £10,000 and £14,000 per patient per year. Once a patient is started on drug therapy, it is likely they will need to take this for the rest of their lives. Life expectancy for HIV+ individuals is also increasing, which also adds to the cost burden. Dr Barry Evans of the Health Protection Agency believed that the high cost of treating HIV was the only reason for its exclusion from the list of communicable diseases exempt from charges on public health grounds:

We would not be here having this debate if with HIV treatment one could treat it for a fortnight and cure it, if it was like syphilis or other sexually transmitted infections which with a course of antibiotics or antiviral treatment you cure the patient. It is a public purse argument.[155]

133. However, as discussed above, no data exists on how many people with HIV will now be ineligible for treatment, and hence how much money the changes to charging regulations might actually be expected to save.

The costs of not treating HIV

Treatment in A&E

134. Many memoranda we received pointed out that the cost of not treating HIV is also very high, perhaps even higher than the cost of treating it. Without treatment, those with HIV are likely to become seriously ill ever more frequently, accessing treatments through A&E departments on a "revolving door" basis. While those ineligible for free HIV treatment would be charged for any subsequent inpatient treatment if they were admitted to hospital, initial treatment in an A&E department would be free.

"Immediately necessary treatment"

135. As discussed above, there is a provision in the regulations for clinicians to provide "immediately necessary treatment" for a "life-threatening problem". However, the THT argued that many of those who are no longer eligible for NHS treatment for their HIV are effectively destitute because they have no legal means of employment. If such a patient was admitted to hospital for "immediately necessary treatment" for a "life-threatening problem" and then charged after the event, he or she would be very unlikely to ever be able to pay those charges.[156] The Minister also highlighted this as an issue:

One of the issues is, obviously, that some people do end up receiving charged treatment and are unable to pay, and so trusts do end up sometimes having to write off debts.[157]

136. Considering the situation from a purely pragmatic point of view, an NHS Trust could in fact end up losing more money through its obligation to provide "immediately necessary" treatment to an HIV+ person who has developed a life-threatening problem, and who is subsequently unable to meet the charges for this treatment, than if they had provided free ART to that person to prevent them from becoming ill in the first place. As the NAT pointed out, while a year of ART can cost between £10,000 - £14,000, one day in a hospital bed can cost about £500 - thus it would take only a few days a month in a hospital bed to equal, if not exceed the cost of ART for that person.[158]

137. The Terrence Higgins Trust argued that where people clearly will not be able to pay, pursuing debts "is not only a waste of time and money but an enormous stress upon the already unwell individuals pursued."[159] BASHH agreed that "the effort and resource required to bill people for care and treatment, who are unlikely to be able to afford it, is wasteful."[160] In oral evidence, the THT gave an example of cost escalation and the problems attached to trying to recoup such costs:

For example, there was a long-stay visitor in North London who was rushed to hospital with pneumonia. This is a case that was brought to our attention at Terrence Higgins Trust. She was diagnosed as HIV-related and therefore billed after four days for £2,000. Because of that billing, she discharged herself, went home and self-medicated, and after several days collapsed and had to be admitted to intensive care, where her further costs came to £23,000 for that episode alone.[161]

138. The Department's consultation on changes to charging rules for overseas visitors suggested that cost-saving was a key reason for reviewing the regulations. We were therefore astonished that, by the Department's own admission, these changes have been introduced without any attempt at a cost-benefit analysis, and without the Department having even a rough idea of the numbers of individuals that are likely to be affected. While generating even small amounts of savings for the NHS might appear to be worthwhile, in the case of HIV treatment we have received powerful evidence that it would in fact be more cost-effective to provide free HIV treatment to all, as, without treatment, HIV+ individuals living in this country without proper authority are likely to place a far greater burden on NHS resources. We recommend that the Department reviews the financial implications of this policy immediately and, furthermore, that it ensures all its future policy decisions are based on evidence and underpinned by robust cost-benefit analyses, as stipulated by Cabinet Office and Treasury guidelines.[162]

Cost in terms of onward transmission

139. The financial benefit of preventing further transmission of HIV is clear - the Department's own estimates suggest that preventing a single onward transmission of HIV saves between £500,000 and £1million in terms of individual health benefits and treatment costs.[163] However, as we discuss in greater detail below, introducing charges for HIV treatment may in fact contribute to onward transmission, both because charges may act as a deterrent to testing for people who cannot afford treatment in the event of a positive result, and because untreated individuals are more infectious than those on treatment whose viral load is controlled. In its cost-benefit analysis of the changes to regulations governing access to free NHS treatment for overseas visitors, the Department must also take into account the potential costs associated with increased onward transmission of HIV.

Public health implications

140. The British Association for Sexual Health and HIV put the public health position very simply:

HIV positive patients in the UK irrespective of immigration status are of public health concern.[164]

141. According to the NAT, "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."[165] The Health Protection Agency, the Government agency charged with providing advice on protection against infectious diseases and other dangers to health, supported this view:

We are concerned that the new and proposed changes may impact on the clinical and public health management of HIV infection in overseas born individuals diagnosed with HIV in the UK[166]

142. Several key public health concerns were raised in the evidence submitted to us which are discussed in detail later in this section. The first is the possibility that the lack of treatment will provide a deterrent to testing. The second is the argument that untreated individuals pose a greater transmission risk to the uninfected population than those on treatment; the third is that new regulations may have an adverse effect on antenatal HIV testing and therefore increase rates of mother-to-child transmission of HIV; and finally the potential impact on TB transmission rates.

143. The Department's memorandum made no mention of the possible public health implications of introducing charges for overseas visitors for HIV/AIDS treatment, and our evidence criticized the Department for not having carried out a public health impact assessment of the charges introduced in hospitals from 1^st April 2004, nor of those currently being considered for primary care.[167]

144. Although public health concerns relating to HIV were raised by several responses to the Department's consultation, these were dismissed in the Department's consultation outcome document:

It was clear that there has been some misunderstanding of our proposals and respondents have raised concerns resulting from this. These included public health issues … On public health grounds treatment of communicable diseases such as TB is and will remain free of charge to everyone.[168]

145. We were surprised to learn that no public health impact analysis of these regulations was carried out prior to their enactment, particularly given the level of the public health threat posed by HIV and the increasing rates now being seen in this country. We are aware that public health arguments were put to the Department during its consultation, but these arguments do not appear to have been answered or taken account of. Given the Department's responsibility for safeguarding public health this seems short-sighted, and suggests a lack of coherence within policy making within the Department. We recommend that, in addition to cost-benefit analyses, public health impact analyses be carried out in respect of all Department of Health policies.

A deterrent to testing

146. A first crucial step in preventing the onward transmission of a communicable disease is to diagnose those already affected, so that they may modify their behaviour accordingly to prevent onward transmission. This is particularly important in infections like HIV which may be asymptomatic for many years. Indeed, a central aim of the Government's National Strategy for Sexual Health and HIV is to reduce the number of those with HIV who are undiagnosed.[169] It is estimated that 51% of all undiagnosed HIV infections in the UK are among African communities.[170]

147. Research suggests that providing free treatment for HIV may reduce transmission rates within a population by giving people a motivation to seek testing. According to the NAT, research from Taiwan shows that the government policy of providing HIV-positive people with free ART reduced the rate of HIV transmission by 53%.[171] However, it is quite possible that for those who will be unable to access free treatment in the event of a positive diagnosis, and who would not be able to afford treatment costs, a primary motivation to seek testing will be lost, as the Terrence Higgins Trust argue is already happening:

People from one of the communities of highest prevalence for HIV in the UK have begun to ask why they should test for HIV if they may not be able to obtain treatment for it. While we believe there is almost always good reason to know one's diagnosis and thus be able to make informed decisions about both health and sexual behaviour, this view is gaining currency amongst migrant communities and is impacting on testing campaigns targeting them.[172]

148. A letter to the BMJ from four London-based HIV physicians illustrates the problem very starkly: "Back in the mid eighties before anti-retovirals were available, many individuals were counselled that there was little point in getting tested if bad news was the most likely outcome. Surely we cannot go back to this era"[173].

149. The NAT argued that the impact of the new system on the principle of confidentiality might be a further deterrent to testing:

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.[174]

150. It is also possible that the introduction of charges for HIV treatment for those in the country without proper authority will have a negative impact on testing rates even amongst those who are eligible for treatment. The Terrence Higgins Trust runs the THT Direct national helpline which receives on average around 600 calls a week. According to the THT:

Anecdotally, staff and volunteers estimate that enquiries about eligibility for NHS services have gone from around one to two a week (a year ago), to one to two each day (currently), a sevenfold increase. They also state that a substantial number of these calls are from people who are eligible for NHS services, but who are afraid to approach services directly because they do not want the shame of being refused.[175]

151. We put these arguments to the Minister, but she did not accept them, stating that she saw "no reason in relation to any of these things why somebody should not come forward early"[176]. However, we are unable to share the Minister's optimistic view that the introduction of charges will have no impact on the numbers of people coming forward for HIV testing. Although charges have been in place for less than a year, the fact that organisations such as the Terrence Higgins Trust are already reporting a growing reluctance to have HIV tests amongst migrant communities is extremely worrying.

152. Coupled with increasing confusion regarding eligibility for HIV treatment even amongst those who are eligible, and fear amongst migrant communities that if, in future, they attend health services they will be questioned about their immigration status, this strongly suggests that the introduction of charges for HIV treatment will increase the number of HIV+ people living in this country who are unaware of their infection, in direct contradiction of the Government's target to reduce the number of undiagnosed HIV infections. An increase in the numbers of people who are unaware of their HIV+ status will pose a serious and escalating threat to public health.

HIV diagnosis, treatment and transmission

153. As discussed above, diagnosing HIV is the first step in preventing onward transmission by enabling HIV+ individuals to be informed about various measures they can employ to protect their own health and that of their sexual partners. However, recent research evidence suggests that an HIV diagnosis alone is often not sufficient to stop individuals who are HIV+ engaging in risky behaviour that may potentially pass the virus on to others.[177]

154. Because of this, once a person is diagnosed as HIV+, they would normally be referred to a specialist HIV service which they would attend at regular intervals. As well as medical treatment, patients would usually be offered access to a variety of services designed to help them change their behaviour to prevent the onward spread of HIV. According to the Terrence Higgins Trust,

Failure to treat will also mean that people who would otherwise encounter a range of services in a clinical setting will be lost to interventions, such as counselling and group work, designed to support people in maintaining safer sex and preventing behaviour likely to contribute to onward transmission.[178]

155. Recent research suggests that targeted interventions such as regular counselling can reduce unsafe behaviour amongst HIV+ individuals, with the potential of preventing the onward spread of HIV.[179]

156. We also heard evidence that another crucial way in which onward transmission can be prevented is by treating patients with anti-retroviral drugs which lower their viral load, and thus their infectivity. If people with HIV are unable to access anti-retroviral treatment and associated services, they will be more infectious than if in treatment. Research evidence indicates that with treatment, transmission rates can be lowered by as much as 60%.[180] Dr Barry Evans of the Health Protection Agency provided a clear and compelling argument for the importance of treatment in preventing onward spread:

On the issue of the onward spread of HIV we have reasonable data now that shows that the spread of HIV is strongly related to viral load. Viral load rises with the progression of the infection. As the CD4 count, the level of immunity drops, the viral load rises, and with high viral load is much more likely to transmit. If people are not diagnosed and they continue to be sexually active, they are more likely to transmit, the higher the viral load. There are other co-factors affecting transmission, including other sexually transmitted infections and so on, but viral load is a powerful indicator of transmission potential, so that if you do not treat individuals and they remain in this country and are sexually active in this country, then the transmission is bound to go up.[181]

The Public Health Minister, however, did not seem to be aware of the strong correlation between viral load and infectivity, or of the fact that treatment to reduce viral load is likely to reduce infectivity:

Actually, treating somebody with HIV/AIDS, unfortunately, does not reduce their risk to the general population at all. It is only behaviour change that alters that risk.[182]

157. The Minister asked the Chief Medical Officer to write to us to explain the Department's position on this issue after our evidence session. In his letter, the Chief Medical Officer stated that a reduced or undetectable viral load does not, in every case, indicate that a person with HIV is not infectious:

Although many people with undetectable viral load in their blood also have an undetectable viral load in their sexual fluids, this is not always the case. Some people with undetectable viral load in their blood have quite high viral load in their sexual fluids which could be high enough to infect someone…studies conducted in men have found that having an untreated sexually transmitted infection, particularly gonorrhoea, increases the chance that viral load will be detectable in semen.[183]

The Chief Medical Officer also emphasised the importance of continued condom use for HIV+ patients, not only to prevent further transmission, but also to avoid the transmission of other STIs and drug-resistant HIV.

158. We agree with the Chief Medical Officer that HIV treatment cannot guarantee that an individual will not be infectious, and that the presence of other untreated STIs can make a person with HIV more infectious. For this reason, we strongly support his emphasis on the importance of condom use for HIV+ patients, even if they are being treated. However, his letter did not dispute our central argument that, although it cannot cure HIV infection, treatment can reduce a person's infectivity and can therefore lower transmission rates. In fact, his letter would seem to support this view, as it states that "an undetectable HIV viral-load is the goal of anti-HIV treatment" and that "many people with undetectable viral load in their blood also have an undetectable viral load in their sexual fluids".

159. The Minister argued that there was a crucial difference between the public health impact of treating other communicable diseases and that of treating HIV, which was that while treatment for other communicable diseases is curative and reduces the risk of onward transmission to zero, treatment for HIV/AIDS is not curative, and does not entirely eliminate the risk of onward transmission:

Miss Johnson: There obviously is a difference. The free bit of it is around the public health risk, and the public health risk if somebody has another sexually transmitted infection is that actually, if we treat them, that risk goes down to zero.[184]

Dr Taylor: Although as soon as you begin to decrease the viral load, you begin to decrease the infectivity. Our attention has been drawn to…

Miss Johnson: Yes, but it is not like having another sexually transmitted infection where a course of antibiotics will remove the infection from the body. Let us just be clear. There is quite a difference here… I nonetheless maintain the very firm understanding, which is that there is a zero risk for some things after treatment and there is not a zero risk with HIV/AIDS.[185]

160. The Minister's argument appears to us to be fundamentally flawed on two counts. The first is that, there are several other communicable diseases which are exempt from charging, including, for example, TB and herpes, where treatment does not reduce the risk of onward transmission to zero. Even if treated, the genital herpes virus can be shed through the skin and infect others, even if there is no outward sign of infection present. After treatment for TB the risk of relapse is between 2-5%, and the disease can recur and be passed on to others. Shingles is another example of a communicable disease which, even when treated, can recur and be passed on to people without immunity as chickenpox. Secondly, the Minister's focus on reducing transmission rates to zero is misplaced: it is worthwhile reducing a risk even if it cannot be eliminated.

161. The evidence refutes the Minister's stance that anti-retroviral treatment does not reduce HIV infectivity and therefore has no impact on public health. On the contrary, the scientific literature to date suggests that HIV infectivity is directly linked to viral load, and therefore that treatment which reduces the viral load of HIV+ individuals will potentially reduce onward transmission of HIV. Indeed, the Health Protection Agency, the Government's own public health advisory body, stated unequivocally to us that "if you do not treat individuals and they remain in this country and are sexually active in this country, then the transmission is bound to go up."[186]

162. While we accept that, in giving evidence to us, the Public Health Minister was not supported by a Department of Health official with medical expertise, we are surprised that she appeared so unbriefed on basic aspects of public health prevention. Firstly, many treatments do not reduce the risk of onward transmission to zero. This is the case for genital herpes and for TB, both of which are exempt from treatment charges on public health grounds. Secondly, it is worthwhile reducing the risk of onward transmission of a disease, even if it cannot be eliminated.

Mother-to-child transmission

163. Many memoranda have raised the issue of HIV+ women who are pregnant.[187] By adopting a range of measures, including delivery by caesarean section, use of the drug AZT during pregnancy and childbirth, and avoidance of breastfeeding, rates of mother-to-child transmission can be reduced from between 25-23% in an untreated population to below 1%. Because there are such effective measures available, HIV testing is now routinely recommended for all women using antenatal services in this country.

164. Unfortunately, there seems to be considerable confusion over whether or not HIV+ women who are not eligible for free NHS care can be treated to prevent them passing on the infection to their babies. According to the Department, where treatment is deemed by a clinician to be "immediately necessary, either to save life or to prevent a condition from becoming life-threatening, then that treatment must be given without delay, irrespective of whether the patient is, or may be, chargeable". The Department also states that its guidance on the application of charges is "explicit that, because of the potential risks to both mother and baby, hospital maternity services should always be considered as immediately necessary treatment. This could include HIV treatment where it was considered clinically necessary."[188]

165. However, several memoranda have reported examples where pregnant women have not been able to access HIV treatment[189], and the NAT points out that if women are refused free access to ante-natal services at the outset, their HIV infection may never be picked up:

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.[190]

166. We welcome the Department's statement that hospital maternity services should always be considered immediately necessary treatment, including, where necessary, HIV treatment. However, evidence presented to us suggests that considerable confusion exists over eligibility for maternity services. If the charging regulations are extended to encompass GP services, this situation is likely to worsen, as primary care is a key access point for ante-natal services. We recommend that the Department immediately issue further guidance to the NHS stating that antenatal and maternity services, including HIV treatment to prevent mother-to-child transmission, must be made available to all women, regardless of their immigration status or ability to fund the treatment.

TB infection rates

167. TB cases have increased by nearly 20% in England and Wales over the last two years, with London now a "TB hotspot", accounting for 3,000 cases a year, nearly half of all UK cases.[191] The Chief Medical Officer has recently published the TB Action Plan to address this.[192]

168. Co-infection with HIV and TB is a relatively common combination for African people in the UK. TB is exempt from any charges under the regulations. However, in order to ensure TB treatment is effective, the underlying HIV must also be treated. The THT reported that individuals coinfected with TB and HIV have been told that, while TB treatment is free, the HIV treatment necessary to ensure that their TB treatment is effective will be charged for:

This has resulted in at least two cases known to us where patients have left hospital before the end of their TB treatment, risking the development of multi-drug resistant tuberculosis (which is transmissible) and returning to the community still able to transmit TB, as well as HIV.[193]

This point was reinforced by the Health Protection Agency:

Underlying HIV infection is an important consideration in the management and treatment of tuberculosis (TB) and failure to address this can lead to inadequate treatment of TB, running the risk of reactivation, the potential for developing drug resistant TB and ongoing potential for transmission.[194]

169. Those who are TB/HIV co-infected are more likely to develop the active form of TB and pass it on to others, and a person with active TB will typically infect between 10 and 15 people a year.[195] If, as described above, a person is able to transmit multi-drug resistant TB, this is much harder to treat and poses an even more serious threat to public health.

170. Thus the failure to treat HIV, as well as increasing HIV transmission to others, may result in an increase in TB infections, which will occur amongst HIV-negative people as well as HIV-positive people. According to the NAT, a 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.[196]

171. We are extremely alarmed by the prospect of people co-infected with HIV and TB being managed ineffectively. If their underlying HIV is not treated because of cost, they may then default from care and as a consequence transmit TB to as many as 15 people a year. It is a nonsense that the Government is prepared to fund a person's TB treatment on public health grounds but not treatment of his HIV infection.

Primary care

172. Many of the memoranda we received argued that the proposed extension of the new charging regime to primary care will be extremely harmful to the fight against HIV in the UK, suggesting that this will close another vital channel through which people can access HIV testing.[197] The NAT argued that this also undermined attempts to treat other serious or emergency conditions free of charge, as without some health assessment available in primary care, other conditions which require urgent treatment might well be missed. These conditions might include communicable diseases such as TB, for which free treatment would be available on public health grounds.[198] Dr Paul Williams, a General Practitioner who works in a practice in Stockton-on-Tees that exclusively serves asylum seekers, states simply that "access to all types of health care begins in primary care".[199] At the same time, many people ineligible for free NHS care except in A&E Departments may present at A&E with relatively minor conditions, overburdening the A&E service and increasing waiting times and pressure on resources in A&E.

173. The NAT were amongst many to argue that a free primary care health assessment should continue to be available to all, regardless of eligibility status.[200]

174. Primary care can be a vital access point for all types of services. This includes services which the Government stipulates must continue to be provided free to all people, regardless of their eligibility status, such as HIV testing, treatment for communicable diseases such as TB, antenatal and maternity services, and "immediately necessary" treatment for emergency problems. Refusing patients free access to GP services could, arguably, be seen to undermine all these exemptions that the Government has made within the charging regime by denying patients access to a first, basic health assessment. We therefore recommend that all people, regardless of their eligibility status, are given access to a free primary care health assessment.

Conclusion

175. We are deeply concerned that neither the Department nor the Public Health Minister appear to have considered or understood the public health implications of refusing HIV treatment to people who, although not legally resident, continue to live in this country. Firstly, it seems that this policy is already deterring people in high-prevalence migrant communities from accessing HIV testing. Equally importantly, by denying people free HIV treatment, a vital opportunity is being missed to reduce by perhaps as much as 60% their likelihood of transmitting HIV within the wider resident population. We dispute the Minister's view that HIV treatment benefits only the person receiving it, and her view that for a public health intervention to be worthwhile it must reduce the risk of onward transmission to zero - TB and genital herpes are just two examples of communicable diseases for which treatment is currently free where a significant risk of recurrence and onward transmission remains despite a course of treatment. We also have serious concerns about the impact of this policy on mother-to-child transmission of HIV, and of the onward transmission of TB, including drug-resistant strains.

176. During our evidence session, the Minister mentioned the "easement clause" the Government has introduced, which enables clinicians to provide treatment deemed to be "immediately necessary" regardless of a person's eligibility status. In a subsequent letter she also further emphasised the clause which states that where a person has begun a course of free NHS treatment, that treatment will continue to be free until the course of treatment has been completed. According to the Minister, "for HIV in many cases this will mean treatment will continue free of charge for a very long time". While we appreciate these attempts on the Government's part to reduce the impact of the regulations on those who have life-threatening problems or who have already begun treatment, we feel that they do not adequately address the problems that we have identified in respect of HIV.

177. We agree with the Minister that it is appropriate to provide a national health service, not a global one. However, a crucial part of the Government's responsibility to provide a national health service is to protect the health of the population. Untreated HIV+ people living in this country present a serious public health threat, and we therefore recommend that all HIV+ people, regardless of their immigration status, receive free treatment to reduce the likelihood of the onward transmission of HIV, of mother-to-child transmission of HIV, and of the onward transmission of TB. We believe that to achieve this, HIV should be reclassified as a Sexually Transmitted Infection, which would make treatment automatically free on public health grounds. If, subsequently, there is evidence that as a result of this decision the UK is becoming a magnet for HIV+ people around the world seeking access to free treatment, which from the evidence we have heard we do not anticipate, the policy can be reviewed.

105 Health Protection Agency, Focus on Prevention - HIV and other STIs in the UK in 2003 - an update, November 2004 Back

106 Health Protection Agency, Focus on Prevention - HIV and other STIs in the UK in 2003 - an update, November 2004 Back

107 Health Protection Agency, Focus on Prevention - HIV and other STIs in the UK in 2003 - an update, November 2004 Back

108 Health Protection Agency, Focus on Prevention - HIV and other STIs in the UK in 2003 - an update, November 2004 Back

109 Department of Health, Proposed Amendments to the NHS (Charges to Overseas Visitors) Regulations 1989 - A Consultation, July 2003 Back

110 HA01, para 9 Back

111 HA20, para 2.4 Back

112 HA01, para 8 Back