Alliance News, number 13, May 2002
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Viewpoint: VCT and prevention of mother-to-child transmission: a personal account
By Beatrice Were, Executive Co-ordinator of the International Community of Women (ICW) living with HIV/AIDS

Preventing mother-to-child transmission (MTCT) is an area where voluntary counselling and testing (VCT) play a pivotal role. Beatrice Were describes her experience of testing, discovering her HIV status, of having three children, one recently, and the issues, risks and decisions she and other women face.

As a mother with HIV what has been your experience of VCT?

In 1991, when I first tested, there was little or no information on the disease so the fear of testing and finding out the result was a significant experience. My test was at the only existing HIV centre in Uganda, the AIDS Information Centre (AIC). It was extremely crowded and full of very anxious people.

This was a very reactive time partly because of the fear-inducing messages coming from the Ministry of Health: AIDS kills. Love carefully. Avoid promiscuity. It was all very judgmental and stigmatising.

What were your motivations for testing?

My main reason for testing was the loss of my partner in 1991 to an AIDS-related illness, cryptococcal meningitis. I needed to know more and find out my own status.

What makes for successful VCT?

Readily available information which is accurate and updated regularly to reflect the changing situation. For example, counsellors need to know the details, the latest findings and treatment information to be able to provide support. The community requires information, too, to raise awareness and know what to fear and what not to fear.

You also need good support services and support networks. Whether the result is positive or negative, the VCT experience will have been painful, emotional and risky. Even a negative result does not necessarily reduce the stress. For women questions persist like: How do I maintain my status in a polygamous relationship? How do I negotiate safer sex? How do I demonstrate the value of wearing a condom? If I test positive, how do I know that my husband or partner won’t throw me and my children out and so lose our livelihood? These challenges are full of trauma for anyone who has recently been tested.

What decisions did VCT help you with during your recent pregnancy in the UK?

When you know your HIV status you can better understand the implications of how a pregnancy can affect your immune system and the impact of ARVs on the baby. Having lived with HIV for 10 years, I was worried about how the baby would escape infection, and that something could go wrong.

Knowledge is incredibly empowering. I made sure I knew as much as possible about ARVs, CD4 count, viral load and methods of safer sex so as not to expose my unborn baby to more virus. I found out about methods of delivery and the benefits of an elective caesarean birth. I didn’t want to take anything for granted. Many women are ignorant of the risks, not knowing their HIV status, and thus expose their unborn child to risk.

Then there was the decision not to breastfeed. This is a very difficult decision, especially for women in Africa, where extended families exert huge pressure to explain why you are not breastfeeding. Also, it’s not easy to access milk formula or water and supplies can be uncertain. I was fortunate as I had access to resources and could discuss my decisions with my partner. Not only did I have his support, but I had the support of my doctor and midwife, especially when making decisions concerning the delivery.

In the UK I have choices. In a resource-poor setting there are fewer choices concerning swapping drug treatments – due to the cost implications – or concerning an elective caesarean birth. All these services need to be available, affordable and accessible in all communities.

What more could be done to train healthcare providers in women’s needs?

Health workers need to keep learning about MTCT from both positive and negative women who have gone through VCT. They need to be aware of cultural issues, the pressure some women face to have a baby and power relationships in male-dominant societies. These are very emotional areas where women can easily feel intimidated by judgmental healthcare providers.

Health workers also need access to the correct information and skills to be able to act and help women use the information they receive so they can negotiate for themselves post VCT. Healthcare providers also play a large part in unveiling stigma and in marshalling support for changing men’s attitudes. Husbands and partners need to understand their changing role and deal with the impact of the test. They need support in this time of huge adjustment to find answers to questions like: Why is your partner not breastfeeding? Why did she not have a natural birth? They have to deal with guilt as well as the financial and moral dimensions.

What has been the impact of ARVs?

Where ARVs are available, they provide a complementary level of service to care and support programmes. More people are likely to test when there is access to treatment. When pregnant and ARVs are available, you are confronted with another situation – whether to carry on with the combination that you are on or switch to another.

All these choices are full of risks which make decisions hard. However, you gain enormous psychological confidence to make decisions when pregnant, knowing that you are managing your viral load and monitoring your CD4 count. Also, by having access to ARVs in the UK, I was privileged in that I could put off opportunistic infections and deal with the pregnancy on its own.

Overview: VCT: entry point to HIV prevention and care
Twenty years since the emergence of HIV/AIDS, 95 per cent of people living with HIV/AIDS (PLHA) in the developing world are unaware that they are positive and have limited or no access to voluntary counselling and testing (VCT) services. VCT enables people to receive confidential counselling ahead of testing. Once informed, if they then decide to test, post-test counselling and ongoing psycho-social support can be provided to help individuals take care of themselves and others and take preventative measures, whether their result is positive or negative.

VCT has been recognised for some time as a key component of, and entry point to, effective HIV prevention and care. Consequently, increased commitment from donors and programmers is growing for the rapid scale-up of services.

THE BENEFITS OF VCT

While there are risks involved and often difficult choices to make, the benefits, both to the individual and the community, are leading to increased demand for accessible VCT.

HIV prevention – if the result is positive, knowing one’s status can be an incentive to modify sexual behaviour to prevent transmission to sexual partners. A negative result provides a compelling incentive to maintain this status and, in a high prevalence area where someone might have assumed a positive status, it provides a clear rationale for taking preventative action.

Access to medical care and support – there is an increasing range of medical care for people with HIV, including advice on nutrition, preventive therapies for tuberculosis and other opportunistic infections, as well as antiretroviral (ARV) therapy.

Prevention of mother-to-child transmission (MTCT) of HIV – women who know that they are positive can make informed decisions on contraception and pregnancy.

Enhanced coping and psychosocial support – PLHA can adjust earlier to their diagnosis and have access to emotional care and support to help cope with their status as well as supporting each other.

Planning for the future – PLHA can make plans for their own future as well as their family’s future.

There is always a risk that those who test positive may face discrimination, abandonment or serious emotional reactions to their seropositive result. These consequences can be minimised with the provision of ongoing counselling, support and sensitive discussion around disclosure. This is especially important for women who test positive. If they are in a relationship with an HIV-negative man, evidence shows they are more likely to face discrimination than a positive man in a relationship with negative woman.

EFFECTIVE VCT

Since the introduction of VCT services, informed consent, confidentiality, quality control and good referral systems have already been identified as key components for services to be ethical and effective. More recently, VCT services are applying considerable effort to promote the benefits of:

Couples testing – There are far more benefits to VCT when both partners in an ongoing relationship get tested and counselled together. If both partners are negative or both are positive, sharing this knowledge can help to either maintain a shared negative status, or to support each other to live positively with HIV. If the couple have different HIV test results, couple counselling can make it easier to disclose test results and to introduce condom use into an ongoing relationship. While promoting couples testing, it is also important to ensure that each partner consents individually and privately to a test, to prevent any form of coercion. While couples testing is increasingly common, NGOs also need to experiment and innovate around VCT for people involved in polygamous relationships.

Community advocacy, legislation and education – Community education programmes, legislation and public health policies can assist in reducing the discrimination experienced by PLHA. Preparing communities for VCT so that they understand its benefits and provide support for those testing positive is essential. VCT uptake and acceptability will otherwise be limited by fear of discrimination and stigma.

Communities in Action: Linking communities with VCT services
To support the Government of Zambia’s plans to scale up voluntary counselling and testing (VCT) services, a number of organisations have come together to form The Zambia VCT Partnership. This partnership is a collaboration between the Government, donors and NGOs which collectively aims to expand access to, and demand for, high quality, comprehensive VCT services. The model the partnership is supporting is an integrated, comprehensive, community-centred approach:

Integrated – VCT services are being sited in government health clinics where a number of other health and HIV/AIDS services can be accessed.

Comprehensive – VCT is placed within, and links with, a wider package of HIV/AIDS prevention, care and treatment services.

Community-centred – there is a shift of focus away from the service delivery point to the community where people live, interact with each other, share experiences, make decisions and get support – or not. The programme is supporting a free testing service and same day test results.

Each partner brings a specific focus and area of expertise to the partnership and contributes to strengthening one or more of the following key components: community sensitisation and mobilisation; the delivery of quality VCT services at the health centre; and post-test prevention, care and support services.

The International HIV/AIDS Alliance is a key partner of the Zambia VCT Partnership where support is focused on the community level components. Working in partnership with district level NGOs, CBOs and people living with HIV/AIDS (PLHA) groups, the Alliance’s focus is on:

• Increasing community understanding and support for VCT

• Strengthening referral networks around health and social support for PLHA

• Strengthening prevention, care and treatment services delivered by NGOs and CBOs

• Promoting and supporting the involvement of PLHA in all aspects of VCT and HIV/AIDS programming and strengthening PLHA support groups

• Decreasing HIV-related stigma and creating a more supportive social environment for PLHA.

Listening to, learning from and supporting the active participation of the community is key to the Alliance’s approach to community level work. During the start-up phase of the district level work, the Alliance conducted a community baseline study in four districts to learn more about current community understanding of, and views about, VCT. The baseline provided data for tracking indicators as well as valuable information and insights to help inform and guide priorities for the community level work. The baseline implementation process was also a first step in mobilising district NGOs and CBOs around VCT and in creating community dialogue around the issues.

Key learning from the Zambia VCT community baseline

• People see HIV/AIDS as a major problem affecting their communities. However, many people have a sense that many more people have HIV/AIDS than the actual figures suggest.

• There is still a culture of silence that surrounds HIV/AIDS and a sense of helplessness.

• People’s understanding of HIV/AIDS is limited to very basic facts and misconceptions persist.

• Many people think that there is 100% chance of a baby having HIV if the mother does.

• The majority think a pregnant woman should have an HIV test but only half said they would support a woman who was not breastfeeding.

• Very few respondents had had an HIV test; however the vast majority said they would be willing to have a test.

Main reasons for deciding to test:

• To stop worrying and get peace of mind

• To get advice and make decisions on one’s health and the future

• To increase community awareness of HIV/AIDS

Main reasons for deciding not to test: .

• Fear that the test result would not be kept confidential by the counsellor or health worker

• Negative attitudes of people in the community towards PLHA

• Fear of rejection by family and friends

• The belief that nothing can be done and consequently knowledge of HIV status is pointless

• Fear of being labelled promiscuous

• The service is too far away and difficult to access

The Zambia VCT Model
Decision to learn more about VCT (as a basis for access to)
Integrated health services including VCT (supported by)
Community dialogue and mobilisation on HIV/AIDS and VCT (leading to)
Support for sustained safer sexual behaviours (and)
Support for ongoing and changing needs of PLHA and families

NEWS: Senegal: Tony Blair and Clare Short visit Alliance supported project
During their visit to Senegal in February, UK Prime Minister, Tony Blair, and UK Secretary of State for International Development, Clare Short, visited RNP+, the Senegalese national network of people living with HIV (see photo above). RNP+ is an excellent example of how partnerships between community and government can lead to effective programmes to tackle HIV/AIDS in Africa. While the National AIDS Programme in Senegal provides financial support for the network's premises and running costs, ANCS, the Alliance linking organisation in Senegal, provides financial support for programme activities and technical support for programmatic, organisational and institutional development.

NEWS: Burkina Faso US Congressional visit to Alliance supported project
In January, US Congressional staff were accompanied by the US Ambassador to Burkina Faso, Jimmy Kolker, on a visit to CEPROFET – an organisation that IPC, the Alliance linking organisation in Burkina Faso, has supported to start a community mobilisation programme for orphans and vulnerable children (OVC). In response to the trip evaluation question "How can this trip help you as you write legislation and advise your boss on AIDS policy issues?", one member of staff commented, "Having seen the programmes in the field and heard from programme workers, care providers, funders, partners, and patients/participants, I have a much better picture of what the reality is and how these programmes could be improved!"

NEWS: Nigeria New linking organisation
Following an assessment visit and a pilot project in Nigeria in 2001, the Alliance is now working in partnership with NNELA (Nigerian Network on Ethics, Law, HIV/AIDS Prevention Support and Care) as an Alliance linking organisation in the south-west of Nigeria. In 2002, the Alliance will work with NNELA to build its organisational and programmatic capacity to formalise its role as an NGO support organisation to NGOs/CBOs in the south-west region. NNELA will provide financial and technical support to NGOs/CBOs through a process of participatory community assessment and project design. These projects will respond to a broad range of HIV-related needs through care and support, prevention, awareness-raising and advocacy activities.

NEWS: Spain XIV International AIDS Conference – Barcelona
The Alliance will be giving oral and poster presentations at the conference, offering a skills-building session on strategic and realistic fundraising (in Spanish) and holding two satellite meetings on Sunday 7 July in the Palacio 5 Building, Level 4, Hall/Room 5:5:

• Choices and challenges for NGO support programmes, from 12.00-14.00. This satellite session will bring together people who have established, managed or studied NGO support programmes. Using a panel discussion format, participants will discuss the choices and challenges of providing support from government ministries or from intermediary NGOs; the dilemmas of how to decide which NGOs and CBOs should receive support; lessons learned in scaling up technical assistance and capacity building efforts; and more.

• From participation to empowerment in focused HIV prevention, from 16.00-18.00. This satellite will highlight and critically reflect on the many years of practical experience of the International HIV/AIDS Alliance and its partners in participation and empowerment in focused prevention. A series of case studies from different countries will show how specific tools and approaches have been used to encourage the participation of sex workers, injecting drug users, MSM and people living with HIV/AIDS in designing, implementing and monitoring interventions, in developing resources and also in providing technical support.

You can find the Alliance at booth number 107 in the NGO village. Alliance linking organisations and partners will also have booths and be giving presentations.

NEWS: Supporters

• USAID has recently extended its grant agreement with the Alliance. The agreement will now continue until December 2007 with a funding ceiling of $75 million over the 1998 to 2007 period.

• Crusaid, a UK-based HIV fundraising charity, has recently awarded $220,000 in grant support through the Alliance to community partners around the world, in support of prevention, care and orphan support activities.

• The UK's Department for International Development (DfID) has awarded a $3,620,000, three-year grant to the Alliance to support work in policy and good practice, with a particular emphasis on supporting the participation of NGOs and communities in new funding mechanisms, such as the Global Fund on AIDS, Tuberculosis and Malaria.

• DfID's Civil Society Challenge Fund has granted $362,000 for work in Mongolia.

• SIDA has granted $580,000 to support the Alliance's Africa Regional Strategy from 2002–2004.

NEWS: Recent Publications
French and Spanish translations of A Facilitators' Guide to Participatory Workshops with NGOs/CBOs Responding to HIV/AIDS:

• Ateliers participatifs avec ONG et OBC luttant contre le VIH/SIDA : Guide du facilitateur

• Una Guía para Facilitadores de Talleres Participativos con ONGs/OBCs que Trabajan en VIH/SIDA

A Question of Scale? The Challenge of Expanding the Impact of Non-Governmental Organisations' HIV/AIDS Efforts in Developing Countries

View and download Alliance publications from the Alliance website www.aidsalliance.org and the Alliance partner website www.aidsmap.com.

Alliance News

Number 13, May 2002

• Voluntary Counselling and Testing