Select Committee on Health Minutes of Evidence

Memorandum by African HIV Policy Network (HA 28)


  The African HIV Policy Network (AHPN) is an umbrella organisation which represents African community groups addressing HIV/AIDS and sexual health throughout the UK.

  The AHPN is an independent charity, registered in England and Wales. It is the only nation wide African organisation operating at policy level. It is involved in informing and developing national HIV strategies and policy. It promotes research and lobbies on behalf of African community-based organisations.

  The AHPN gathers and analyses information from community organisations, health care providers, researchers, NGOs and government departments and distributes what is relevant, up-to-date and accurate among its member organisations. The organisation also delivers capacity-building/training programmes and has been appointed by the Department of Health to manage the National African HIV Prevention Programme.

  The AHPN believes that the current framework of proposed measures appear to be targeting those most vulnerable from the developing world. These proposals would accentuate inequalities rather address them. Charging undocumented migrants, failed asylum seekers, or visitors with AIDS, tuberculosis or malaria runs counter to public health interests. Seeking funds from those who are unlikely to possess them is neither cost effective nor productive. Such measures also run the risk of driving these diseases underground, and increase the burden on NHS A and E services.

  In preparation for our submission to the Health Affairs Select Committee the AHPN undertook a small survey of service providers both in the community and clinical setting. The quotes contained in this submission reflect their respective views and experiences, which also echo the AHPN's concerns.

  Given the grave impact these proposals have already had on the AHPN's members and constituents it is our hope that we will be invited to give oral evidence to support our written submission.


  There are estimated to be more than 8,000 African people living with diagnosed infection in the UK (HPA, 2003:46). In addition several thousand more African people living in the UK have undiagnosed HIV infection since studies have shown that roughly two-thirds of African people in the UK have never tested for HIV (Fenton et al, 2002). HIV prevalence is many times higher among African people in the UK than among the White British majority. Compared to UK born men and women attending GUM clinics (each of whom have an HIV prevalence of 0.2%), 7.7% of African born women and 4.8% of African born men who attend GUM clinics are infected with HIV.

  A recent quantitative study (Weatherburn et al, 2003) which included an analysis of the health and social needs of African people with HIV shows that between a half and three quarters of this group report significant ongoing difficulties in the following areas: income, immigration status, housing and living conditions, and access to training, skills and job opportunities. Difficulties in meeting these basic needs clearly leads to reduced quality of life. Similar percentages said they had significant and ongoing difficulties associated with anxiety and depression, their ability to sleep, their self confidence and their personal relationships. The same study compared the experiences of African people with HIV to their White British counterparts. Compared to other people with HIV in the UK, African people with HIV were 10 times more likely to report problems associated with their income, seven times more likely to report problems with their living conditions, three times more likely to report problems with discrimination and twice as likely to report problems with getting about (mobility) and personal relationships.

  Thus, not only are African people with HIV likely to experience more health and social care needs than the general population, but they also experience more needs than British people with HIV. Social exclusion is undoubtedly exacerbated by factors associated with migrancy. Its likely that a significant proportion of African people with HIV in the UK are (or have been in the past) refugees or asylum seekers (Fortier, 2004), a group already significantly socially excluded (refugee council, 2004a). Exclusion associated with being HIV positive may be significantly compounded by pre-existing social exclusion and social need associated with being an African refugee or asylum seeker.

  In order to survive and thrive, refugees and asylum seekers need to draw on their own personal resources (their ability to work for example) and need to draw on a supportive social environment in their host country. This environment is created first by the support of expatriate communities in the host country as well as in their home country and second by the provision of supportive enabling legislation policy and services by the host country. African people with HIV are likely to have all of these resources particularly curtailed.

  The ability to work (whether it be legally or illegally) is essential for the survival of migrants. Being HIV positive puts certain limitations on this ability. In addition however, African people tend to be diagnosed with more advanced HIV disease and as a result, their general health and prognosis may be poorer than other groups of people with HIV (Weatherburn et al, 2003).

  Despite a relatively long history of the epidemic in sub Saharan Africa, HIV remains significantly stigmatised among African communities in the UK and globally (Goldin,1994, Bhatt, 1995). A recent study (Dodds et al, 2004) has highlighted the importance of expatriate, diasporic and global African networks for survival of African migrants in the UK. However, the same study shows how disclosure of an HIV positive identity often leads to the withdrawal of vital community support. Thus, African people with HIV in the UK are less able to disclose to and draw support from their family and expatriate communities (Erwin et al, 2002, Weatherburn et al, 2003). Stigma at a community level leads to difficulties in even the most intimate relationships. Weatherburn et al (2003) found that 15% of African people living with HIV had not disclosed their status to their partners and only a third of respondents had disclosed their HIV status to their children or their families.

  The policy of dispersing asylum seekers away from large urban environments often means that those living with HIV are moved away from specialist HIV treatment and care centres (Creighton et al 2004) as well as being moved to a setting where support and contact within expatriate groups is unlikely. Home Office changes to immigration policy implemented in April 2003 also mean that a person with HIV who is on treatment will be unlikely to be granted leave to remain on medical grounds under humanitarian protection provisions. If that person is granted discretionary leave to remain it will only be for three years (THT 2003). Although particularly harmful changes to immigration legislation which attempted to ban failed asylum applicants from accessing social care and benefits (HMSO 2002: Sec 55), have been successfully challenged in the courts by refugee agencies (Refugee Council 2004b), the Government is likely to appeal this ruling at some point in the future.

  In addition to this, changes made earlier this year to the provision of NHS services for overseas visitors impose strict limitations on access to hospital care for non-residents and those whose asylum applications have failed (Department of Health 2004). Broadly speaking, this means that while short term visitors, including students, and failed asylum seekers will be allowed to access HIV testing and other STI screening, long-term treatment for infection will not be provided unless it is paid for privately (Pollard & Savulescu, 2004).

  The current social, legal and policy environment in the UK is not geared towards maximising the health and productivity of African people with HIV.


  Asylum seekers are among the most vulnerable people in Britain. Displaced from their homes due to the threat of persecution, they are often subject to mental and physical violence seeking sanctuary in countries with more compassionate reputations. The UK Government's current system for the handling of asylum-seekers is not focused on helping, but rather on deterring them with present procedures such as the introduction of Section 55 as part of the Nationality and Immigration Act 2002 more punitive than compassionate in nature.

  The AHPN feels that the proposed measures by the Department of Health are another example of this acting as support for changes to current Home Office and Immigration policy.

  One in six refugees (17%) have a physical health problem severe enough to affect their life, and two-thirds suffer significant anxiety or depression (Aldous et al, 1999). In addition, many experience act as barriers in accessing the right type of health care service, such as primary care

  Evidence from research conducted by the British Medical Association (BMA, 2002) has clearly indicated that on arrival to the UK the health of asylum seekers although already precarious, often deteriorates. The health problems that many migrant populations encounter are linked to poverty and social exclusion. Their vulnerability is compounded by the fact that they may be poorly accommodated, and are quite likely to face racial and xenophobic harassment.

  Common problems faced by asylum seekers and refugees are psychological and may be linked to trauma, or isolation from friends and community in the UK. They also experience the physical effects of war and torture such as rape/sexual assault, landmine injuries, beatings and malnutrition and social and psychological problems related to depression, stress and racial harassment. A significant number of asylum seekers are also prone to communicable diseases such as TB, Hepatitis and HIV/AIDS.

  The main reasons to explain the higher susceptibility to HIV include (Broring G et al, 2003):

    —  Refugees and Asylum Seekers may have experienced situations of risk from High prevalence areas.

    —  They may be particularly vulnerable to contracting HIV because of the experiences that have led them to leave their countries of origin, eg rape, sexual assault torture.

    —  The experience of becoming an asylum seeker may mean people are exposed to malnutrition, poor living conditions and a lack of personal safety. Poor living conditions may contribute to sex work as a means of survival.

    . . . there have been instances where people have been asked what their residency status is, if people are singled out it makes them less likely to come forward for treatment. If the department of Health Proposal goes through then some people would not be eligible for treatment which would affect mainly people whose residency status is not secure. If primary care is not provided for people the disease it not treated which means that they will become ill again and have to treated. If they are isolated from the community it has an effect on their health. Dr Nneka Nwokolo, Chelsea and Westminster Health Care Trust


  The United Nations Convention Relating to the Status of Refugees, which Britain signed in 1951, states that host countries must provide those fleeing tyranny and persecution with access to health, housing, education and employment services. Despite this recent migrants continue to face problems accessing health services in the UK due to unclear immigration status and ambiguities or fears about eligibility for health treatment.

  The BMA study highlighted that from the point of entry not enough is being done to safeguard the health of asylum seekers. Basic medical testing is not routinely undertaken with communicable diseases such as HIV and tuberculosis (TB) often going undiagnosed. Those suffering from the psychological effects of torture are also not always referred to specialist centres. Equally concerning is that unaccompanied children are not given appropriate vaccinations and immunisations.

  The current proposal to introduce user charges to communities who by the nature of their status in this country cannot work and thus pay for medical services is both inhumane and unethical contradicting international and national legislation on human rights and discrimination.


  The first National Strategy for Sexual Health and HIV was produced by the Department of Health in 2001. It identified that asylum seekers are a group "at special risk" for whom information and advice need to be provided. Targeted prevention work with African communities was also identified as a priority but no targets were set for improving provision for refugees or asylum despite the fact that the Department itself highlighted need by estimating that over 60% of HIV diagnoses in the UK was among this group with over 80% heterosexually acquired in Sub Saharan Africa. The current proposals ignore the deficit in health services which meet need.

    The effects would be enormous. Especially for people in African communities who have experienced immigration or who are going through the immigration procedure. It can take months or and years to sort out immigration and if during that time people fall ill they need help, they will not be able to afford treatment and at the same time fell isolated because of their immigration status. This will put them psychologically into a very difficult situation. Henry Mumbi, HAAZ


  If certain African communities and other migrants are denied access to treatment the end result is that they will delay attending to serious conditions such as HIV which need to be treated in their infancy. Although TB treatment will remain free diagnosis remains chargeable. Who will be responsible for the loss of life if such patients cannot access A&E or GP care? Equally concerning is that if people are unaware of HIV/AIDS status there is a risk that behaviour will remain unchanged leading to an increased public health risk.

    These proposals will have an affect on people's willingness to test for HIV. It would also mean that people remain with the illness and go underground if they are not treated and don't have access to healthcare. The numbers of HIV cases are therefore likely to rise if they're underground and the disease is not treated. Gertrude Othieno—Specialist in Health Promotion, South West London


  The UK already has the worse rates of sexually transmitted infections since the start of the NHS. Rates have doubled in the last five years. Increased rates of STI are widely regarded as a sign of potential transmission of HIV. Preventing people from accessing appropriate treatment and care, be they citizens of the UK, students, those seeking asylum or those with indefinite leave to remain is both inhumane, unjust and poses significant risks to wider public health. HIV needs to be placed at the forefront of the NHS agenda and we feel that this proposed measure will undermine efforts of agencies, like ourselves, working to prevent the spread of STIs and HIV.

  A system of charging should not be introduced particularly with regard to diagnostic testing, counselling and treatment services for sexually transmitted infection and HIV/AIDS. Africans living in the UK tend to present later for HIV/AIDS testing and we feel that the proposed measures would further deter people from taking up testing services. This has evident repercussions for the spread of the epidemic which will have further and weightier social and economic cost implications.

  Under the National Health Service (Charges to Overseas Visitors) Regulations 1989, anyone who has been resident in the UK for more than a year is not subject to charge for NHS treatment. Asylum seekers are exempt as are claimants under Article 3 of European Convention on Human Rights. The AHPN support these entitlements as vital to tackling HIV in the UK.

  This current legislation already poses a problem for people who enter the UK on short-term visas or without a visa, who discover HIV positive status in these first 12 months. These people are currently only eligible for "emergency treatment" regardless of ability to pay, pregnancy status or how long they wish to remain in the country. The consultation document outlines that this "emergency treatment will still be made available, however reports received by sexual health agencies have stated that many hospitals consider emergency treatment as that only available in accident and emergency departments".

  There is a risk that people may be treated repeatedly for life threatening opportunistic infections eg pneumonia without accessing the underlying cause of HIV. Timely antiretroviral treatment decreases levels of virus in the body and is a more humane response. The result of the combined measures of introducing charges for primary and hospital care will be to treat fatally weakened immune systems, shorter life terms and greater economic cost as people revisit emergency services for treatment of opportunistic infection.

    We already have difficulties with too many people presenting late. So it is disjointed thinking from the government in way because on the one hand we are trying to get people into the health service as possible but at the same time they are making it more difficult by introducing those policies which deny people access to healthcare. From a public health perspective it doesn't make sense because it's more effective to treat early. Dr. Ade Fakoya, Senior Programme Officer: Clinical Care International HIV/AIDS Alliance and Consultant Physician Newham General Hospital


  The Human Rights Act (HRA) brings into national law the majority of the rights and freedoms set out in the European Convention on Human Rights. Withholding proper medical care from someone with a serious illness could be held to contravene Article 2 (right to life) or 3 (freedom from torture). Those rights are actionable directly in the domestic courts and create an obligation for courts, and "public authorities" to interpret the provisions of all legislation in a way that is compatible with the Convention. The NHS, Trusts and health professionals working within the NHS are seen as "public authorities" and therefore need to be aware of the Act. Although many aspects of care remain unchanged, the HRA is likely to have a great impact on the public awareness of patients' rights in relation to medical care.

  Article 2 of the European Convention on Human Rights is concerned with the "right to life". This policy refers to any life threatening condition not just HIV. Applications for Exceptional leave within the UK remain are often made (not always successfully) under this clause. The proposed measures will undermine access to treatment and therefore this article of the convention. It states that "Everyone's right to life shall be protected by law. No one shall be deprived of his life intentionally save in the execution of a sentence of a court following his conviction of a crime for which this penalty is provided by law."

  Article 3 states that no one shall be subjected to torture or to inhuman or degrading treatment or punishment.

  Article 14 of the Act is related to the Prohibition of Discrimination. Stating that "The enjoyment of the rights and freedoms set forth in this Convention shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status."

  The UK is also bound legislatively by the UN Declaration on Human Rights. Article 25 of this declaration recognises the right to health by migrant communities. Stating that these rights and freedoms "shall be secured without discrimination on any ground such as sex, race, colour, language, religion, political or other opinion, national or social origin, association with a national minority, property, birth or other status."

  The 1969 International convention on the Elimination of all Forms of Racial Discrimination also accords minority ethnic communities the right to access public health, medical care, social security and social services. The proposed measures contradict all these forms of legislation.


  The AHPN feels that the link made between HIV and migration in the last year has contributed to the proposed measure. It has been suggested that there are a large number of people entering the UK for reasons of "health tourism" in order to benefit from free HIV treatment on the NHS. This flawed concept has been used to introduce a range of policies that limit access to the UK, to HIV treatments and much needed social support services. Additionally, the proposed measure runs the risk of exacerbating this. Health professionals must also be careful not to breach section 20 of the Race Relations Act by discriminating against asylum seekers (by refusing to provide them with health care services, for example, or by providing lower standards of care). It is unethical to refuse to accept particular patients solely because they may require expensive treatment (so-called "uneconomic" patients).

  As an umbrella African organisation we are concerned that the tone with which the proposed measures are introduced, will serve to stigmatise African communities compounding existing experiences of racial discrimination and social exclusion with that of stigmatisation as the "bearers" of disease within the British public mind.

  There is no vaccine or cure for AIDS, but provided HIV is diagnosed early enough new treatments can prolong life for many. Access to essential life-saving HIV treatments is a human right. Although the National Health Service currently makes HIV treatments widely available, a range of barriers exist to equitable treatment access for some, particularly for overseas visitors. These include limited availability of information about treatment options, lack of patient support services for adherence to complex treatments, the discriminatory attitudes of heath care workers, and regulatory restrictions affecting groups such as asylum seekers. Research indicates that the most common form of discrimination experienced by people with HIV in the UK is discrimination by health care providers.

    Of course it's racist to single out patient's eligibility according to their background or status of residence. It is completely racist if you walk into a hospital because you are ill and they ask you about your immigration status. It is making things difficult for us because we're trying to get people at first contact. So the stigma is a double edged sword because it drives them away. Dr Ade Fakoya, Senior Programme Officer: Clinical Care International HIV/AIDS Alliance and Consultant Physician Newham General Hospital


  The existence of alleged "health tourism" to which this measure is clearly a response has not been substantiated and has also been contradicted by a recent study conducted by the Terrence Higgins Trust among predominantly African service users of HIV services in London, Manchester and the West Midlands. The study found that:

    Most people only test positive for HIV when already ill, pregnant or after the diagnosis or death of a partner. This does not suggest the actions of those who enter the country specifically for HIV treatment.

    People accessing HIV treatment enter the country for a number of reasons and no one category of migrants stands above the others.

    Late diagnosis is a serious problem amongst African migrant communities because most wait until they are palpably ill before using medical services.

    HIV infection among UK based African people takes longer to diagnose, because many African people are here in very difficult circumstances—already experiencing racial discrimination and there is a strong resistance to facing the additional stigma of HIV.

    Most HIV in African communities is transmitted heterosexually, and this has only become more apparent, because the NHS has diagnosed more women with HIV through antenatal screening programme over the last two years.

    No that's completely wrong. The UK actually has a fairly low number of migrants and who are using a small proportion of the health budget. It is not as a big problem as the media is portraying it to be. Dr Nneka Nwokolo, Chelsea and Westminster Health Care Trust


  As early as 1999 government guidelines have stated that "all pregnant women should be offered an HIV test" (Health Service Circular 1999/183) .To withdraw this option is to contribute to both heterosexual and mother to child transmission. THT Direct the National HIV/AIDS helpline has already had reports that many hospitals have diagnosed women as HIV positive, but denied access to treatment if they do not have the ability to pay or qualify for the 12 month rule. The AHPN consider this inhumane and would not wish to see this as an outcome duplicated within primary medical services involved in HIV testing. Most HIV among African communities is acquired heterosexually antenatal testing and referral is vital to stemming the epidemic.


  The Department of Health document does not consider the impact on unaccompanied children and young people under the age of 18. The impact upon children's issues is of specific concern to African communities—because the majority of children currently affected by HIV, tuberculosis and malaria will, be African. The proposed policy contradicts other policy and legislation such as The Children Act 1989, Lord Laming's recommendations following the Victoria Climbié Inquiry and the current Children Bill.

  The largely invisible population of young people born overseas, who live in British cities without their biological parents will be significantly affected by restricting access to General practice. These maybe school age children who have sought asylum (usually without any knowledge of our legal system) without any adult, even a distant relative. These children have fled their homelands after civil war or state-sponsored genocide and few attend school or maintain a fixed address.

  The health needs of these children can be serious and complex (psychological and physical trauma, TB, substance use or pregnancy following rape), however health services will be inaccessible to them if the proposed measures are introduced. Local Government currently acts as the "corporate parent" of these children. The AHPN feel that the proposed measures undermine the necessary role of primary medical providers for this group. These children maybe without parental support or guidance and can be exposed to commercial, sexual and servile exploitation. Access to a GP, for treatment of a minor injury, may be their first opportunity for contact with a responsible, law-abiding UK citizen. Removing this right will severely impact on their future life opportunities. It is also a violation of the right to health guaranteed under the UN Convention of the Rights of the Child.

    . . . And the other thing is, if you have an HIV positive child you will also have an HIV positive parent so the children need to be treated but you can't treat the children without treating the parents. That is another problem we have people going underground. If a child is on treatment and the family for whatever reasons decide to go underground, the child will go with them which means that it will stop taking the treatment. Magda Conway, Co-ordinator Children and Young People HIV Network


  The UK formally acknowledged the gravity of the global AIDS crisis during the G8 Summit and at the UN General Assembly Special Session on HIV/AIDS in 2001. Here it was agreed to set up and financially support the Global Fund for AIDS, TB and Malaria recognising the country's responsibility in the fight against communicable diseases. This together with WHO strategies offer the best hope of providing funds for treating HIV/AIDS and for preventing new infections, in order to ensure that 3 million people access combination therapy by 2005. The proposed charges run counter to international policy and commitment made by the UK.

  The proposed measures lead the AHPN to question the UK's commitment to the global consensus on HIV/AIDS under UNGASS 2001. We feel that the proposed measures run counter to international, regional and national commitments within the UNGASS report to combat HIV. Unless the UK Government ensures free access to HIV/AIDS prevention and treatment facilities it will not be working towards,

    "measures to eliminate all forms of discrimination against and to ensure the full enjoyment of human rights and fundamental freedoms by people living with HIV/AIDS and members of vulnerable groups, in particular to ensure their access inter alia, education, inheritance, employment, health care, social and health services, prevention, support and treatment, information." (UNGASS, 2001: 28)


  The AHPN questions whether or not the proposed measures are solely concerned with saving NHS funds rather than acting as support to the current Home Office clampdown on asylum and immigration.

  Our fear is that the underlying target of these measures and those who will suffer the most from their implementation are people from the developing world. If these measures are aimed solely at reducing NHS costs the focus should be on visitors from America, Australia, New Zealand and Japan not visitors from war torn countries. Britain received 24.2 million overseas tourists in 2003 with expenditure of £11,737 million, 4.4% of national GDP. The highest levels of expenditure included that from the US (£2,443 million), Middle East (£527 million) and Japan (£320 million). The majority of visitors to the UK are tourists and students, and as such these are visitors from the developed world who access the NHS most regularly, for conditions less serious than HIV.

  We feel that these groups should be the legitimate focus of the DoH effort. From the DoH perspective it is also more likely that there will be more success in securing reimbursements when targeting these groups. We accept that the DoH must be concerned with the allocation of finite resources and encourage increased vigilance in pursuing reimbursement through visitors' medical insurance or underwriting care through inter-country agreements.

  Medical conditions such HIV, TB and malaria (common in the Third World) should be underwritten by the NHS since many visitors from the developed world will have access to medical insurance and will be able to reimburse the NHS


  The proposed introduction of charges to overseas visitors for primary care services if implemented would exacerbate the health inequalities that exist in Black Minority Ethnic and migrant communities. Its implementation would further discriminate against those find themselves vulnerable and unable to navigate an already complex healthcare system, namely failed asylum seekers, undocumented migrants, and overstayers. These provisions would counter the strides made in public health, and would serve to push people underground, especially people with special needs like HIV/AIDS, who desperately need life saving treatment and services. Far from saving money it would further burden the system as A & E services would become their source of primary care. Further, it would force people to turn up for care when their conditions have progressed beyond repair. Introducing charges for primary care would be a retrograde from the strides made towards a preventative model of care. The introduction of charges to the most vulnerable in our society counter the very raison d'être of the NHS.


  A system of charging should not be introduced particularly with regard to diagnostic testing, counselling and treatment services for sexually transmitted infection and HIV/AIDS. HIV treatment and care should be added to the list of diseases exempt from charges.

  The majority of visitors to the UK, are tourists, students, employees and visitors from the developed world who currently access the NHS most regularly, with less serious conditions than HIV. This group should be the legitimate focus of the DoH effort since it is here that the DoH are most likely to succeed in securing reimbursements. The AHPN encourages the DoH to be more vigilant in obtaining reimbursement through visitors' medical insurance or underwriting care through inter-country agreements.

  Attempts to reform the NHS should ensure that people in asylum seeking and migrant communities are informed about their rights to healthcare, by fully engaging community based organisations in advocacy and translation.

December 2004

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