Tearfund Good Practice
Niche Area Three
Improved access to treatment with anti-retrovirals and for opportunistic infections
1.
DEFINITION AND DESCRIPTION
HIV is transmitted through blood, sexual secretions, breast milk and other body fluids. Normally, the
body's immune system fights off infection, but HIV infects key cells (CD4 cells) which co-ordinate the
immune system's fight against infection. Infections that develop because HIV has weakened the
immune system are called “opportunistic infections”. As the CD4 cell count decreases, opportunistic
infections occur (including TB, diarrhoea and skin infections), and the infection progresses to a clinical
condition known as Acquired Immune Deficiency Syndrome (AIDS). In children progression from HIV
to AIDS may be more rapid. Once someone has HIV they are more likely to develop have an TB and
malaria.
There is no cure for HIV infection. However treatment with anti-retroviral (ARV) drugs suppresses the
virus in the body and allows an increase in the CD4 count. If a person takes anti-retroviral treatment
(ART) intermittently – drug resistance is likely to occur.
The World Health Organisation has standardised treatment regimes for HIV¹. “First-line treatment” is
used to begin with. “Second line treatment” is used when the virus becomes resistant to first line
treatment. Combinations of different types of ARVs are used because HIV has a high rate of mutation
and readily becomes resistant to individual drugs. The medication must be taken regularly. Even
missing two doses each week is enough to enable the virus to develop drug resistance. Low-cost drug
combinations are increasingly available. There are now a large number of poor people who are
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successfully taking ART ² ³. A key issue is when to start the ARVs. Previously most governments used
the WHO Grading System to diagnose AIDS clinically, waiting til patients reached Stage 111 or 1V
before starting treatment. With the increasing availability of CD4 testing equipment – HIV +ve
patients with CD4 of < 200 were started on ARVs. The cut-off has been revised and all patients with
counts of < 350 should now be started on ARVs. While ART regimes can be quite complex, they can
be prescribed effectively by specially trained nurses. Home care by NGOs can be as effective as clinic
based care. A key aspect is to ensure that the patient knows the side effects of the drugs and how to
avoid/cope with them. Some ARVs need to be taken with food; others need to be taken on an empty
stomach.
Cotrimoxazole prophylaxis prevents infections (diarrhoea, pneumonia and Pneumocystis infection)
and prolongs life in resource-limited settings.
Tearfund partners that are actively involved in reducing stigma and discrimination (niche area four)
and in impact mitigation (niche area two) have a crucial contribution to make to improving access to
treatment. These aspects are discussed in the relevant niche area documents. Other areas which are
part of Tearfund’s strategic response are covered in the documents on prevention of transmission
from mother to child (niche area one); behaviour change among children and young people (niche
area three).
2. NGO CODE OF GOOD PRACTICE IN HIV
The NGO Code states a goal of providing anti-retroviral therapy (ART) to all people living with HIV and
AIDS for improved health, decrease of stigma and to ensure participation in society. At present, access
to services is inadequate. Poor people in rural areas often have to travel far to obtain CD4 testing and
regular supplies of ART. Some patients tend, mistakenly, to conclude that if they are feel well they do
not need to continue with their ART. It is vital to ensure that ART is accessible to all, regardless of
language, gender and wealth.
First, there needs to be widespread availability of HIV testing and counselling. This is defined as
voluntary counselling and testing (VCT), where a person who is concerned they may have HIV
requests a test. The other type of testing - provider-initiated testing - occurs when health care
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providers request an HIV test as part of their care of a patient who shows symptoms of HIV and AIDS.
Some churches and NGOs now provide “Door to Door” visiting in which HIV testing is offered in the
home. Counselling and testing has two components, with confidentiality as essential to both:
• Pre-test counselling – informed consent based on the person being tested understanding the
purpose of testing, and treatment, care and support available once the result is known.
• Post-test counselling – for those who are HIV positive, to discuss the meaning of the result and to
refer people to appropriate agencies. In remote areas, some churches and NGOs provide
transport to take blood for CD4 count to central laboratories rather than request the patient to
use scarce resources for travel. Counselling for those who are HIV negative involves discussion
about reducing the risk of infection. “Opt – out” testing is now used in most antenatal clinics; all
women receive the HIV test but those that do not wish to know the result (in practice the
minority) do not return for the result.
The NGO also needs to either provide, refer to effective services or advocate for the provision of:
• Close integration with child health and reproductive health (including sexually-transmitted
infections - STIs) and antenatal care.
• Targeted health information and clinical treatment programs for HIV, malaria, TB, STIs and
opportunistic infections. This should include information about the side-effects of drug treatment
and how important it is to continue treatment.
• Tailored support programmes which include counselling, helping people to continue their
treatment (adherence), nutritional support, spiritual support and peer support. Some churches
and NGOs have started a “Buddy” system in which a trusted friend (often a PLWHA) accompanies
the patient for testing and to ensure regular taking of ARVs. \it is important that patients are
contacted by their Buddy early in their disease. If treatment starts late – mortality is high.
• Care services including home–based care, terminal and general nursing care.
• HIV clinical treatment programmes which include treatment of opportunistic infections and
provision of ART.
• Prevention and treatment of STIs, TB, malaria and water-related diseases.
It is essential that the response to HIV and AIDS continues to be based in the home and community,
with the involvement of people living with HIV and AIDS (PLHA), their family and community in
programme design, implementation and monitoring. It is also important to ensure that carers are
supported to avoid burn-out.
3.
GUIDELINES FOR PRACTICE
3.1
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What would this mean for someone living with HIV
People will be encouraged to find out their HIV status, knowing that if they are positive they
will access the appropriate treatment and advice concerning health, family planning and
condom use in order to reduce the risk of transmission to their sexual partners and children.
Children born to HIV positive mothers will receive early prophylaxis with Cotrimoxazole and
an HIV test (an ELISA test for HIV antibodies) at 18 months of age. Increasingly, babies are
tested for the presence of the virus itself (by a PCR test) at 6 weeks of age. Children who are
HIV positive will then continue Cotrimoxazole, be monitored clinically and will have their CD4
counts tested to decide when ART should be started. .
HIV positive adults will be placed on Cotrimoxazole prophylaxis. Where appropriate they will
have TB diagnosed and treated promptly. This is beneficial to their health and decreases
transmission of TB to household members. according to their CD4 count.
Adults receiving ART will have a lower risk of transmitting HIV due to lower viral load.
HIV positive parents and couples where one partner is HIV positive and the other is HIV
negative (discordant couples) will be advised about contraception. If they wish to have a
child, they will receive counselling concerning parent to child transmission of HIV.
HIV discordant couples wishing to marry in church will be supported by the church as they
make decisions about their future.
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3.2 What should Tearfund-supported projects implemented by partners cover?
The project response of partner organisations should be coordinated with the national response,
based on local good practice, have regular access to updated information, training and other capacity
building initiatives, and contribute to a collective voice for advocacy. NGOs, particularly those
providing direct medical care, should be members of the appropriate national associations for HIV
and AIDS. Smaller faith-based and community-based organisations and church groups should be
encouraged to participate at least in local community or church, denominational or
interdenominational associations which will allow sharing of experience and mutual support.
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There are readily available guidelines for treatment of adults and children . If partner organisations
are not directly providing all the components of comprehensive care, they should advocate for access
to existing services, contribute to developing the capacity of existing government services.
1. Ensuring access for marginalised groups within the community. Support may include assisting
with transportation costs, providing someone to accompany the person and advocate for
them at the point of service delivery, support for adherence to medication and food to
accompany medication.
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2. Testing and counselling (voluntary or provider-initiated)
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3. Nutritional support , such as directly supplying food, cash transfers, start-up loans and
agricultural advice (see Impact mitigation niche area 2).
• To maintain body weight, children and adults who have HIV but do not yet symptoms,
have a 10% greater need for energy (calorie intake) than those without HIV infection.
Those who are ill have a 20-30% greater need, and children with weight loss, a 50-100%
greater need.
• Malnutrition makes people with HIV more vulnerable to infections. Severe Acute
Malnutrition (SAM) which includes oedematous malnutrition and marasmus is often
precipitated by HIV. Children with SAM in endemic areas need testing for HIV. Once
children with HIV develop SAM thye have a high mortality so it is useful to test children
with moderate malnutrition for HIV in endemic areas. “Catching them early” is
important to reduce mortality from HIV.
• Children in the first two years of life are particularly vulnerable to disease and illnesses.
Interventions include nutritional assessment, growth monitoring, counselling regarding
infant feeding and provision of supplementary food as appropriate.
• Micronutrient supplements should only be given following local guidelines.
• Counselling and community support may be required to assist people with the nausea
and anorexia which can be side effects of ART, particularly when treatment is first
started.
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in particular:
4. Management and/or prevention of opportunistic infections
• Tuberculosis testing and treatment (for at least 6 months).
• Treatment of symptoms of sexually transmitted infections (STIs) as STIs also increase the risk
of transmission of HIV.
• Cotrimoxazole prophylaxis. This should be made available to all HIV positive people following
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national guidelines if the government will not make freely available.
• Provision of insecticide treated bed nets (ITNs) if in an area where malaria is prevalent.
• Advice to reduce water-borne diseases.
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5. Access to anti-retroviral therapy
• Counselling to PLHA and care-givers in preparation for life-long ART. Assess the readiness of
the person to accept ART and concerns about side effects and gain commitment from the
PLHA to take their ART for the long-term.
• HIV positive children need access to a test to see what their CD4 count is if they are to
receive ART.
• Ongoing counselling, treatment support, support groups. This will include:
• Education and follow-up of people experiencing side-effects of ART.
• Discussion with religious leaders on how to advise people to continue medication
which needs to be taken with food during periods of fasting.
• PLHA should be referred to an officially recognised treatment service, with the best effort
being made by Tearfund partner organisations to ensure that there will be continuity of the
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service and compliance with national or WHO treatment guidelines .
• Where possible all HIV positive members of a family should be treated.
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If ART is provided directly by the partner organisation, there is a need to:
• Comply with national guidelines
• Have a reliable drug supply and guaranteed project funding for at least 3 years and
ensure that ARTs will be available from Government or another agency at the end of
the project funding.
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Palliative or end of life care will be required for those who have no access to ART, who are
diagnosed too late to get benefit from ART, who cannot take ART due to its side-effects or
who are dying despite ART. The numbers of people requiring palliative care is decreasing as
the numbers of people being tested and started on ARVs increases.
Prevention of infection in care-givers. The risks of acquiring HIV through caring (e.g. touching,
washing, disposing of body fluids) is minimal but these should be minimised by providing
gloves to carers. Carers should be aware of their increased risk for acquiring TB.
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Provide education and commodities to enable care givers to follow universal precautions .
- Have a policy on post-exposure prophylaxis (PEP), (a course of anti-HIV medication that may
block HIV infection, for people who may have been exposed to HIV infection) and have
necessary drugs readily available. There should be readily available knowledge of which
specific local medical facility has staff with the necessary expertise and drugs for the
management of PEP.
3.3 How can people living with HIV be involved?
• PLHA who are successfully taking ART are the ideal people to provide education to others
before they start ART and to encourage long-term adherence.
• As part of a homecare network they are able to participate in the full range of homecare
services, with the added strength of speaking from direct experience.
• Consideration needs to be made for the health of PLHA with an understanding of the physical
restrictions they may face.
Greater involvement of people living with HIV and AIDS should be encouraged at all levels of the
organisation and programmes with the aim being to obtain representation in each of the following
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categories: target audience; contributors; speakers; implementers; experts and decision makers . The
level and extent of PLHA involvement in the organisation will depend on access to treatment; other
responsibilities in particular for family and income generation, and on the climate of discrimination.
Women need to be actively encouraged and supported to participate.
3.4 Understanding the gender dimensions within the area
• Understand the fear among women of experiencing violence if they are found to be HIV
positive.
• Understand the fear of men and women of knowing their HIV status. Encourage men to be
tested with their wives or other partners, particularly when the woman is pregnant. This
requires provision of “Father Friendly Services” using a combination of innovative activities
(including special fathers clinics, calling fathers on their mobiles involvement of fathers in
discussions of care for women and children). This also reduces the danger of the man having
wrong or inadequate information about HIV and therefore reduces negative feelings towards
his wife if she is found to be HIV positive.
• Where the woman’s partner is not willing to be tested, but the woman wishes to proceed
with testing and is found to be HIV positive, advocate for her to access treatment and
provide her with services with protection of confidentiality.
• Encourage women to attend clinics for treatment. Access may be limited by her inability to
leave the house, especially if she is afraid to disclose her HIV status. Care for other family
members may tie her to the house. Both women and men may lack money for transport or
extra medical fees.
• Women may be diagnosed at the time of illness or death of a partner, which provides an
opportunity for earlier entry into an HIV/ART programme. These women have a high chance
of remaining well, and may actively participate in peer education and home-based care.
3.5 Relationship to home based care
Home-based care is integral to the NGO management of HIV and AIDS. See 3.2 above.
Specific roles for homecare workers include:
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• Home delivery of TB treatment each day (Directly Observed Treatment or DOTS)
• Monitoring and counselling for adherence with ART
• Counselling family members of PLHA
• Palliative care and support at times of acute illness
These can be challenging and stressful roles for home care workers. Tearfund workers need to:_
• Provide a support mechanism for homecare workers to avoid burn-out.
• Continue active recruiting and training of home care workers.
• Consider replacement of active homecare workers after a certain period of time. Many
workers experience burn out after 3 years.
• Encourage volunteers through incentives including recognition (T shirts, training, recognition
by church) and friendship.
4.
KEY INDICATORS
Baseline measurement of these indicators will be part of project planning and be included in the initial
proposal submitted to Tearfund. This may be carried out by the partner organisation or rely on
information gathered by other agencies within the target community.
• Definition of Target Population – e.g. how many pregnant women are there in the
community in 1 Year.
• Description of Geography with account of access of target population to services by
government/NGOs
• Description of how far people have to travel for HIV testing, CD4 coubts and ARV supplies
• % of Target Population (e.g. pregnant women) who currently receive – HIV test, CD4 count,
ART
• % of newly diagnosed HIV ve people who are supported by a “Buddy”
• The mortality rate (%) of patients by 12 months after starting ART.
• % of people with advanced HIV infection (Clinical Stage 3 according to WHO classification, or
CD4 less than 200 where CD4 testing available) receiving AR combination therapy
• % of health facilities within project area with resources to:
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Test for HIV
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Test for CD4
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Give ARVs for those with low CD4
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Give ARVs to HIV positive pregnant women
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Give food supplements to malnourished people living with HIV
• Percentage of people on ART who report taking all medication.
• Evidence of review of care-givers and burn-out monitoring plan.
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REFERENCE LIST
1. Chronic HIV Care with ARV therapy and prevention. Integrated management of adolescent
and adult illness; Integrated management of childhood illness. Interim guidelines for health
workers at health centre of district hospital outpatient clinic. World Health Organisation. July
2006. Available online.
2. The WHO public-health approach to antiretroviral treatment against HIV in resource limited
settings. Gilks C.F. etc al. Lancet 2006;368:505-10
3. Ferradini L., et al. Scaling up of highly active antiretroviral treatment in a rural district of
Malawi: an effectiveness assessment. Lancet 2006; 367:1335-42
4. Making a difference. Tearfund’s strategic response to the AIDS pandemic. July 2006
5. Renewing our voice: Code of good practice for NGOs responding to HIV/AIDS 2004. Julia
Cabassi, David Wilson. Distributed by Oxfam GB. www.oxfam.org.uk/publications
6. UNAIDS 2003. Handbook on access to HIV/AIDS-related treatment: A collection of
information, tools and resources for NGOs, CBOs, and PLWHA groups. Geneva: UNAIDS
7. Acute Care: integrated management of adolescent and adult illness. World Health
Organisation October 2005. Can be downloaded from WHO Website; acutecarerev2_e.pdf
Mermin et al
8. Report on Food and Nutrition for people living with HIV and AIDS. May 2006. The Presidents
Emergency Plan for AIDS Relief. www.state.gov/documents/organization/66769.pdf
rd
9. Caregiver Booklet: symptom management and end of life care. 3 Draft May 2006. WHO.
Can be downloaded from WHO Website: caregiver booklet.pdf
10. Guardians of our Children’s Health – to be introduced by Tearfund
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11. Comparison of Home Based with Clinic Based Care for HIV in Uganda Lancet Dec 19 2009.
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