Memorandum by African HIV Policy Network
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
WITH HIV IN
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.
3. THE PROPOSED
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
4. A LACK OF
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.
5. AFRICAN COMMUNITIES
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
6. DELAYED DIAGNOSIS
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 OthienoSpecialist in Health
Promotion, South West London
7. THE RISK
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
8. PROPOSED MEASURES
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
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.
9. THE TONE
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
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
10. CHARGES OF
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 circumstancesalready experiencing racial discrimination
and there is a strong resistance to facing the additional stigma
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
11. ACCESS TO
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.
12. THE IMPACT
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 communitiesbecause 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
. . . 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
13. THE PROPOSED
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
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
"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,
14. THE PROPOSED
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
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.