Memorandum by Children and Young People
HIV Network (HA 3)
This memorandum sets out the impact charging
overseas patients will and is having on HIV positive children
in the UK. It presents financial and ethical reasons for why HIV
treatment such as highly active antiretroviral therapy (HAART),
which has been so successful in preventing illness and prolonging
life, should be excluded from this charging scheme. It presents
how this goes against other government policies in regards to
children. Also included is the progress to date of implementing
some of the recommendations from the Health Select Committee within
the children's HIV sector. The information provided reflects the
views and experiences of both health and the voluntary sector
in relation to children living with HIV in the UK.
Within this memorandum, the term "affected"
refers to those children living in a family where one or more
members are HIV infected.
The Network is concerned that the government
is sending out conflicting messages. In the foreword of the NHS
Improvement Plan, the Prime Minister stated in paragraph 1: "Despite
past frustrations, the NHS and its valueshealthcare for
all according to need, not ability to payretain overwhelming
public support. So, too, do its dedicated, skilled and compassionate
Yet the proposed changes in charges will mean that NHS treatment
will not be offered on the basis of need.
Case Study: A Doctor was informed by the Primary
Care Trust (PCT) that funding was not available to treat an HIV
positive child who did not at that time have leave to remain.
This child was rapidly progressing to an AIDS related illness
and had to be admitted to intensive care where the illness was
treated, but still highly active antiretroviral therapy (HAART)
was not permitted to be prescribed. The Doctor argued that one
week in intensive care was the financial equivalent to nine months
HAART, and that without HAART this child would have many periods
in intensive care, with little hope of long-term survival.
We find the provisions to allow a child access
to expensive intensive care treatment, yet not HAART, nonsensical.
This procedure saves the PCT no money and causes unnecessary suffering
to the child.
1. The Children Act 2004, section 11 gives
a "duty to promote welfare" to all health bodies in
regard to children's health and well-being and the Local Government
Act 2000. Section 2, gives a duty for the "Promotion of well-being"
to all local governments. In addition, the 1989 UN Convention
on the Rights of the Child, ratified in the UK in 1991, states
in article 6 that the child has the "right to survival and
development"; continuing from this the Convention grants
all children, amongst other things, the right to "the enjoyment
of the highest attainable standard of health".
We believe that these new proposals contravene those valuable
provisions to safeguard children's well-being.
2. "Overseas patients" includes
those fleeing war torn countries to seek refuge in the UK. Many
of these countries have high levels of HIV infection. Under these
proposed changes, Clinicians will be expected to deny children
essential medication (HAART) to prolong their lives because their
families will have no way of paying for this.
3. Those working in Paediatric HIV Health,
as with all health care workers, follow standards of medical ethics.
Watching a child's health deteriorate when there are interventions
available that could stop that child's suffering would seriously
undermine that ethical practice and in turn affect workforce morale
and eventually numbers.
4. Available data states that there are
just over 850 children infected children (only including those
born since 1989), a figure that has gradually risen since the
pandemic began. Of these, approximately 45% were born abroad.
But we do not know the figure for those who would not be entitled
to NHS treatment under the new legislation.
5. When a pregnant woman is aware of her
HIV status and takes appropriate interventions including anti-retroviral
medication for herself and the baby, having a caesarean delivery
and avoiding breast-feeding, the risk of the baby being infected
is only 1%. Without interventions the risk of transmission is
about 30%. If pregnant women were denied access to free care there
would be many more babies infected with HIV, which is completely
6. Children infected by HIV who are diagnosed
and treated early live well for many years. Policies that result
in exclusion and discrimination of people from accessing HIV health
care are likely to counteract promoting HIV testing programs.
This would undermine the Government's HIV testing campaign with
the African communities and HIV testing in pregnancy. There is
already evidence that some HIV positive children whose parents
have been denied care after failed Asylum claims have disappeared
from care services.
7. The following information is in regard
to Paediatric HIV service provision and voluntary sector service
provision for HIV positive and affected children. Reference will
be made to the numbered "Conclusions and recommendations"
of the House of Commons Health Committee: Sexual Health.
8. Paragraph 2: patient involvement
The Royal College of Paediatric and Child Health
Infectious Diseases and the Children's HIV Association have striven
to include the voices of HIV positive children in service development
and delivery. HIV positive young people have been asked to present
at events and voluntary sector organisations have been included
in service development.
9. Paragraph 11: single-handed consultants;
Paragraph 20-21: adequate funding
Following the London review of paediatric HIV
the specialised services commissioners group recommended a similar
exercise for paediatric HIV services outside of London too, with
an aim to develop national clinical networks for families with
10. CHINN (the Children's HIV National Network)
was funded by the DoH and has brought together lead clinicians,
commissioners and the voluntary sector to undertake a review of
and support the development of regional clinical networks. These
will work with the principle that all children and families with
HIV have access to the same standard of care wherever they live
in the UK.
11. There are now over 300 children with
HIV living outside of London. It is impractical and inappropriate
for all these families to travel to London for treatment and care.
There are also increasing numbers of women with HIV giving birth
and their family management is increasingly complex. It is essential
that there are family centred services that can provide high quality
HIV care, which is local to the family.
12. The CHINN review of services outside
of London highlights the limited resources for Paediatric HIV
services. Provision is often run from the good will of staff over
and above their regular work. Specialist positions funded outside
of Greater London consist of two part-time Consultants, two full-time
and three part-time Nurses, one secretary and one day a week for
a Pharmacist. This is clearly not sufficient to meet the needs
of over 300 children and their families as described in the previous
13. Paragraph 24: voluntary sector resources
There is limited work occurring to meet the
support needs of both HIV infected and affected children through
voluntary sector services. The actual number of affected children
living in the UK is unknown, but an informed estimate is greater
than 10,000. The Children and Young People Network will be working
with Children with AIDS charity and the African HIV Policy Network
to produce a toolkit to support voluntary and community sector
organisations to work holistically with infected and affected
children and their families.
14. Paragraph 37-39: basic knowledge
The Children and Young People Network has been
working with the Department for Education and Skills (DfES) lead,
and representatives from Local Authorities and the Health Development
Agency to produce guidance for schools on supporting pupils living
with and affected by HIV. This will be published in spring 2005
and will work towards raising the complex issues of stigma and
discrimination in regards to HIV infection in the school setting.
15. "Overseas visitors" infected
or affected by HIV or AIDS should not be charged for NHS treatment
The system will be unmanageable.
Will all patients be asked to prove they are entitled to treatment?
Or will certain groups be targeted and discriminated against?
The impact on NHS staff morale and
ethical practice will be enormous; having to send ill children
away without definitive treatment, knowing that they will return
as emergency patients will be demoralising.
Cost-benefit analyses suggest that
providing definitive out-patient treatment (HAART) for those that
meet the clinical criteria for starting therapy is a cheaper option
than not giving HAART and treating life-threatening consequences
of HIV infection with intensive or high-dependency in-patient
The impact on individual children
and breach of their human rights, "Convention on Human Rights"
cannot be overstated. New Government legislation, such as the
Children Act 2004 aims to protect children from harm and yet in
this particular ruling, denial of medical care could cause harm.
1 The NHS Improvement Plan: Putting People at the
Heart of Public Services, June 2004. Back
United Nations (1989) The Convention on the Rights of the Child.
Adopted by the General Assembly of the United Nations on 20 November
1989. Geneva: Defence for Children International and the United
Nations Children's Fund. Back
Royal College of Obstetricians & Gynaecologists; National
Study of HIV in Pregnancy, Newsletter 60. Back
House of Commons Health Committee: Sexual Health, Third Report
of Session 2002-03 Volume 1 (pp 95-104). Back
Developing Clinical Networks for Paediatric HIV Treatment and
Care in London (2004). Back