REPORT OF THE COLLABORATIVE FUND FOR WOMEN AND CHILDREN TREATMENT ...

Report of the Collaborative Fund for Women, Children and Families Treatment Preparedness and Advocacy Workshop Colline Hotel, Mukono – Uganda 27th – 30th November 20051 International Community of Women Living with HIV/AIDS (ICW) International Support Office, Unit 6, Building 1, Canonbury Yard, 190a New North Road, London N1 7BJ, United Kingdom, Tel: +44 20 7704 0606 Fax: +44 20 7704 8070 www.icw.org 1 This report of the workshop was compiled by Matilda Moyo from Zimbabwe. Contents List of abbreviations ................................................................................................................ 3 1. DAY ONE ............................................................................................................................. 4 1.1 Welcomes and introductions ............................................................................................ 4 ICW role in the Collaborative Fund ................................................................................... 5 Introduction to TIDES and the Collaborative Fund ........................................................... 6 1.2 Presentations on Treatment Literacy and Preparedness ................................................... 8 1.2.1 Treatment Preparedness for Women - Florence Mahoro .......................................... 8 1.2.2 Community treatment preparedness – Patricia Asero Ochieng .............................. 10 1.2.3 Modes of treatment literacy..................................................................................... 11 1.2.4 Treatment preparedness, a focus on women and children – Alice Bakunda – Mildmay ........................................................................................................................... 12 1.2.5 Treatment activities in Southern Africa .................................................................. 16 1.2.6 Treatment activities in East Africa – James Kamau ............................................... 17 1.2.7 The CRP Processes in East and Southern Africa .................................................... 18 2. DAY TWO ........................................................................................................................... 19 2.1 Prioritisation of issues by region ................................................................................... 19 2.2 Plenary discussion on Advocacy .................................................................................... 24 2.3 Advocacy experiences and ways forward – ................................................................... 25 3. DAY THREE ....................................................................................................................... 28 3.1 Press statements.............................................................................................................. 28 3.2 Priorities for advocacy ................................................................................................... 28 3.3 Explaining the Collaborative Fund – how to access funds ............................................ 34 3.4 Closing remarks.............................................................................................................. 36 APPENDIX - list of participants ............................................................................................. 38 2 List of abbreviations AIDS ARV ART ASO AU AWEPON CBO CRP CSW EAC EATAM EU FBO FGM GFATM GIPA HIV ICW IEC MSF NGO PATAM PC PEP PEPFAR PLHA PMTCT PPAAT OI SADC TAC TASO TBA TB UNAIDS UNICEF VCT WHO WiPSU Acquired Immunodeficiency Syndrome Antiretroviral Antiretroviral Therapy AIDS Service Organisation African Union African Women's Economic Policy Network Community Based Organisation Community Review Panel Commercial Sex Workers East African Community East African Treatment Access Movement European Union Faith Based Organisation Female Genital Mutilation Global Fund to fight AIDS, TB and Malaria Greater Involvement of people living with HIV and AIDS Human Immuno Virus International Community of People Living with HIV and AIDS Information, education and communication Medicines Sans Frontiers Non Governmental Organisation Pan African Treatment Access Movement Planning Committee Post Exposure Prophylaxis Presidential Emergency Plan for AIDS Relief People living with HIV and AIDS Prevention of Mother to Child Transmission Public Personalities Against AIDS Trust Opportunistic Infections Southern African Development Community Treatment Access Movement The AIDS Support Organisation Traditional Birth Attendant Tuberculosis The Joint United Nations Programme on HIV/AIDS United Nations Children‟s Fund Voluntary Counselling and Testing World Health Organisation Women in Politics Support Unit 3 1. DAY ONE 1.1 Welcomes and introductions Lillian Mworeko, Gcebile Ndlovu Lillian welcomed participants to the “pearl of Africa.” It was explained to the participants that initially, the workshop was on women, children and families. However, it was felt that justice may not be done to the three groups so the focus would be on women and children. Quoting Noreen Kaleeba during a visit to Swaziland, Gcebile said when Noreen Kaleeba joined UNAIDS in Geneva, she was hoping to do some work in a hospice, but when she got there, there were no such facilities because HIV and AIDS were treated as long-term condition in Geneva, unlike in Africa where people suffer. Geneva had adequate facilities for PHA, who were not isolated and had access to treatment, rendering her plan irrelevant. Gcebile expressed gratitude to the Tides Foundation for making the workshop possible and expressed hope that one day, Africans would treat AIDS as a chronic illness just as some Western countries do. She noted that although treatment is available in Africa, it is still not accessible and there is limited access to information. Introductions Introductions were conducted with the focus on participants‟ name, country, interest and area of work. The introductions reflected diversity in backgrounds, areas of interest and ages etc. The planning committee was also introduced. Two people, Nomfundo and Florence volunteered to be guardian angels for the day. They would be the points of contact through whom participants could raise their concerns about the workshop. Expectations Participants were divided into groups of 10 people each, through which they put together their expectations of the workshop. These would be revisited throughout the workshop and the planning committee used them for guidance when reviewing each day to ensure that they were being met. Given that some marginalized women were not represented at the workshop yet their needs could not be ignored, participants were encouraged to think of them throughout the workshop deliberations. These included refugee women, migrant women, drug users, trafficked women, commercial sex workers and other groups of women who were not represented in the workshop. Workshop objectives – Gcebile Ndlovu The main objectives of the workshop were:  To enable participants understand, discuss and prioritise treatment preparedness for HIV positive women.  To enable participants to understand treatment advocacy for HIV positive women for Africa.  To enable participants to understand the Collaborative Fund grant-making process.  To facilitate the selection of the Community Review Panel (CRP) and  To forge the next steps Gcebile gave a brief explanation of the CRP and the need to select one during the workshop. 4 ICW role in the Collaborative Fund Lillian Mworeko The purpose of the Collaborative Fund for HIV Treatment Preparedness for Women and Children is to support community-centered health education and advocacy activities for women and families‟ access to HIV treatment and care through a well-tested model of peer-based community grant making. This is a project that is implemented through a partnership. It is a broad community-centered view of HIV health promotion, to include:  Access to ARV medicines and other AIDS-related treatments;  Action for tuberculosis prevention and treatment;  Reproductive and sexual health;  Pediatric and adolescent health;  Traditional medicine, nutrition, housing;  Access to health care and education;  Efforts to treat and reduce the harm from drug addiction;  Strengthening human rights. The role of ICW is to:  Coordinate the Collaborative Fund for Women and Families activities in Africa;  Help to identify leading women‟s health advocates from the region to participate on a Steering Committee and a Community Review Panel;  Coordinate the work of these bodies and grant making efforts;  Disseminate information about the grant making program and other Collaborative Fund activities;  Review and provide input to Tides on funding proposals;  Identify potential funders in Africa for the Collaborative Fund for women and families  Select community representatives to participate in meetings with funders;  Identify the Planning Committee members according to developed selection criteria (this was done prior to the workshop). The Planning Committee was responsible and charged with preparing for the workshop;  Provide ongoing support to the Planning Committees and to the CRP including communications, material production and dissemination;  Provide logistical support for workshops, trainings and CRP meetings/communications.  Through the Planning Committees and CRPs: o develop workshop agendas and selection processes for workshop participants; o set funding priorities for grant making; o develop funding applications; o disseminate information about the grant making process; and o make all recommendations about which applications to fund; o develop additional Terms of Reference for the Planning Committees and the CRPs as needed. Lillian encouraged participants to share the information from the workshop with other people in their countries. She also called on all participants not to withhold or sit on the information that they received. She noted that during the call for applications to this workshop, most organisations had either sat on the information or used it for themselves, which was not progressive as the information would have been useful to other people. “It does not help and does not build us as individuals or organisations if we do not bring everybody on board, and we cannot bring everybody on board by sitting on information.” She acknowledged the role and contribution of the Tides Foundation and The Pan-African Treatment Access Movement (PATAM) and noted that there is need to strengthen the relationships and work together as the organisations were facing challenges that affect the majority of people. 5 Question and answer It was noted that there were participants from Rwanda and Burundi who could not speak English. Lillian explained that application forms for the workshop had asked if people could speak English and the responses indicated that all participants could understand English and this was a basis for recommending having the workshop in English without translation. However, given the problem that had arisen, those who had difficulties understanding English were advised to sit with people that could assist them with translations. Introduction to TIDES and the Collaborative Fund David Barr Collaborative Fund for HIV Treatment Preparedness is a partnership of the International Treatment Preparedness Coalition and Tides Foundation. It is a community-driven funding mechanism that provides small grants to community organizations for treatment education, support and advocacy projects, funding for regional networks to share information and advocacy strategies, funding for technical assistance to support grantees and program evaluation. A partnership of Tides Foundation and the International Treatment Preparedness Coalition (ITPC) ITPC was formed following ITP Summit in Cape Town, 2003. ITPC is made up of treatment advocates from all over the world. ITPC International Steering Group serves a global oversight and advisory function with representatives from each region. Anybody can join the ITPC list by sending a request to: Gregg Gonsalves at Greggg@gmhc.org. The Collaborative fund is a community-driven mechanism whereby all funding decisions are made by Community Review Panels (CRP) in each region. The Panels set funding priorities based on workshop discussion, review grant applications and decide which projects to fund. Panels must be geographically diverse, have good gender balance, and include people living with HIV/AIDS. People living with HIV/AIDS play leadership roles in all aspects of Collaborative Fund activities. So far funding has been made in ten regions to include: Eastern Europe, Central Asia, Caribbean, Latin America, Southeast Asia, China, South Asia, Southern Africa, West/Francophone Africa, East Africa and next will be Women in Africa. David noted that the funding process is transparent. He further noted that CRP members would be selected at this workshop by participants of the workshop. Collaborative fund activities to date are:  Three rounds of grant making in the former Soviet Union ($600,000 distributed)  Workshops completed in Southeast Asia, Southern Africa, Caribbean, South Asia, Latin America, East Africa, West Africa  2005 grant making already completed in Southeast Asia, Caribbean, Latin America, South Asia, East Africa, West/Central and Southern Africa Grant application process  CRP would set funding priorities based on the workshop discussions.  Applications would be developed. Simple format.  Support would be available to answer questions about the applications.  The application would be distributed throughout Sub-Saharan Africa.  The application would provide guidance and explain the program priorities. Who can apply?  Any community-based organization can apply.  A group of organizations can apply together.  National or regional networks can also apply.  If you are not a registered organization, another group can act as a fiscal sponsor for you.  Any non for-profit group. 6 Monitoring and Evaluation  Tides request a short report after six months and another report after one year.  CRP would develop other methods to monitor and evaluate programs.  Funding selection process is transparent and stresses accountability of programs to their own communities. The Collaborative fund is a Collaboration of Funders. There are currently 19 donors that contribute to the Collaborative Fund, including: World Health Organization, Rockefeller Foundation, Ford Foundation, Stephen Lewis Foundation, Johnson & Johnson, AIDS Fonds Netherlands, Open Society Institute, Pfizer Foundation, Overbrook Foundation and Tides Foundation Over $5 million US has so far been raised and $200,000 is to be distributed in grants following the women‟s workshop. Workshop discussion would guide setting funding priorities and that ideas from the workshop can be turned into grant applications. The Community Review Panel would make all the funding decisions. Tides Foundation has over 30 years of experience in administering small grants. It has experience in supporting HIV advocacy and education work in the U.S. and around the world and experience in supporting women‟s health and empowerment, gay rights, and harm reduction and progressive drug policy programs. The role of Tides Foundation in the Collaborative fund  Raises funds  Administers grants  Assists Community Review Panels and Planning Groups in their work  Ensures accountability and transparency of process  Assists in developing policies of equity, diversity, and openness In his presentation, David said the Collaborative Fund was formed to combat shifting priorities by donors and to empower activists by giving them charge over funding that was intended for their programmes. He expressed appreciation to Lillian and the planning committee for putting the workshop together. Discussion Q. Poverty is one of the contributing factors to the spread of HIV in Africa yet the collaborative fund is for advocacy. Are any plans underway to avail funding to help deal with the problem of poverty through nutrition and income generating projects? The collaborative fund is for advocacy, support and education. The goal is for the programme to grow over time. The Tides Foundation does not determine how the money is to be used, that depends on the priorities set by the CRP. A. 7 1.2 Presentations on Treatment Literacy and Preparedness 1.2.1 Treatment Preparedness for Women - Florence Mahoro In her presentation Florence outlined the challenges faced by women in accessing treatment. Lack of economic empowerment - Many women do not have access to their own funds hence they have to depend on their partners for money for transport in order to access health facilities, medication and diagnostics among other needs. If the man says no, that means they are grounded so access to health depends on the man‟s willingness. In the same vein, women need transport money to travel to health and testing facilities. They need money for tests and subsequent visits to the doctor for monitoring when on ART. However, these tend to be compromised because of lack of economic empowerment. Most health care facilities are far from where people live and most women either have to travel long distances or pay large amounts of money in transport fares in order to access treatment. Culture- Women are not in charge of their bodies and are owned by their spouses, so they are not in a position to make decisions about their bodies without spousal consent. Nutrition - One cannot talk about effective treatment without adequate nutrition, as treatment without proper nutrition can be counterproductive. Discrimination by spouses - Where a couple is positive and both partners require treatment in a situation where there are inadequate resources, men tend to prioritise themselves as breadwinners. This mentality is very prevalent. Shared confidentiality - Some men get tested privately and access treatment secretly without sharing information with their partners, yet they insist on unprotected sex, taking advantage of their partners. Commercial sex workers - There is a possibility of resistance when commercial sex workers are on treatment because they interact with partners who insist on unprotected sex in some instances. There is need to be sensitive to the needs of these women given the risks that they face. Discussion ART and contraception- A key issue that was discussed was that of incompatibility between ARVs and contraceptives. Participants noted that most doctors did not advise women of the possible consequences of interaction between drugs and the pill, resulting in women falling pregnant even when they were on contraception. Although research was being undertaken on the effects of ART on oral contraceptives, experiences by various women in support groups had indicated that ART interfered with some contraceptives. Contraceptives are hormones and ART interacts with hormones thereby resulting in pregnancy. Women on ART should be discouraged from using hormone-based contraceptives. Due to this drug interaction, most positive women on ART are encouraged to use depo and the female condom, while being discouraged from using oral contraceptives. However, depo was a bit strong and the female condom was not easily available. In countries like Zambia, HIV positive women were encouraged to use the condom although in most countries, negotiating condom use was particularly difficult for rural women and often resulted in gender violence. Other forms of contraception such as tubalisation were discussed as options for positive women who cannot use oral contraception. However, this view was strongly opposed as a violation of the sexual and reproductive rights of women living with HIV. Participants agreed to advocate for the speeding up of microbicides as contraception, rather than have tubalisation. 8 “We have to be cautious that health care services are places of disempowerment for women. In South Africa women get injectables without their consent, yet some of them would have wanted to have children and have access to other forms of effective contraception. Sterilisation has been used on young women who want to have children. Women should know their options and then make informed choices.” Women were encouraged to be open to their counsellors and health practitioners about issues of sexuality, treatment etc so that they get the right information. “We would not want women to rely solely on the condom. It is still difficult for women to negotiate for safer sex. Condoms should be the back up method to contraception that does not interfere with ART.” There was, however, need for a thorough evaluation before starting young women on ART, because of the interaction between contraceptives and ART. Erica’s experience- One of the participants, who is on Nevaripine and Combivir, said her doctor had advised her not to take oral contraception because it would not work given that drug combination. Routine testing and PMTCT- It was noted that recent research had shown that HIV positive pregnant women with malaria have a 92 percent chance of infecting their babies. Participants shared the impact of routine tests in their various settings. In Botswana, routine tests had resulted in women having the opportunity to participate in the PMTCT programme. However, disclosing their HIV status to their partners had resulted in an increase in gender violence. While the women could take their PMTCT drugs privately, after delivering, the formula milk often served as an indication of their HIV status and often drew abuse from their spouses. Maria’s experience - Maria shared her experience. If you do not have access to information it is difficult to get what you want. I enrolled for PMTCT. If men are committed and supportive, then it makes life easier for women. If men have access to information and are educated, it is possible for us to have an HIV negative generation. One lady shared her experience of how her husband was very supportive during the ante-natal care and because he participated in ANC and underwent counselling with her, he was supportive. Men, when equipped with information and involved in programmes at an early stage, tend to be very supportive. In Ghana, HIV positive women are encouraged to breast-feed their children and abruptly wean them after three months because of the numerous challenges associated with formula feeding, such as social and cultural problems. Often, women who do not breastfeed are stigmatised as it is assumed that they are HIV positive. Many women are under pressure from their spouses and in-laws to breastfeed. In Botswana, although there is free ART programme and access to PMTCT as well as routine testing, these have had their negative impact. For instance, while women can access PMTCT, their problems start after delivery. When women are seen leaving the hospital with formula milk, they are automatically stigmatised because it is assumed that they are living with HIV. This often results in questions being asked about why they are not breast-feeding, subsequently leading to gender violence and abuse by their spouses. In addition, men in Botswana are reluctant to undergo HIV tests and diagnostics associated with treatment. As a result, when women enrol in treatment programmes, the men opt to share their medication thereby compromising women in terms of adherence, etc. In some countries, routine tests have been a source of stress for women who were tested when they were not ready for it and did not want it but were forced to undergo tests by their doctors. Involvement of men in PMTCT programmes has been effective in some countries, e.g. Uganda. When a couple is jointly counselled, men become very supportive but it is important to give them information. 9 In some countries such as South Africa, however, women have become testing facilities for men. For example, if a woman does not breastfeed, it is assumed that she is HIV positive and the man automatically assumes that he is HIV positive because of his partner‟s status. Men need information from the onset and should not wait until their wives are pregnant before they can access information, treatment and care. Access to treatment - Concerns were raised about access to ART for women as well as paediatric formulations for children. Access to treatment remained a challenge for the majority of women while there were limited paediatric formulations for children. Participants agreed that it was important not to focus on positive women only, but also women in the community so that they can come on board. In addition, they expressed concern that in some instances, health personnel lacked adequate information about fundamental issues such as treatment. 1.2.2 Community treatment preparedness – Patricia Asero Ochieng Patricia defined Community Treatment Preparedness as “Getting communities ready for treatment of HIV/AIDS and to ensure treatment uptake and adherence. She further said that treatment literacy is a vehicle through which successful advocacy can be carried out and that treatment education must become part of a treatment package and we need to advocate for it. Modes of Treatment Literacy Programs • Media – Community radio programmes, newsletter publications in community and national media • Posters – containing treatment information stories of people living with HIV • Treatment information pamphlets • Treatment education workshops. Participants were asked to think of other modes and this was done in a plenary discussion. Components of Treatment Literacy • Treatment education programs need to be decentralized • Treatment education includes a continuum from affected communities to health care providers and community leaders • Translation into media which can reach rural communities, appropriate to different local languages is also critical • A variety of formats should be utilized. One size does not fit all. Alternative formats, e.g. use of theater, should be used. • Health care providers should be seen as partners in treatment literacy efforts. • Peer-based programs should be instituted within health care settings • PLHAs need a sense of security in training and work. Peer-educators need good training and on-going supervision. • PLHAs should not be stigmatized for deciding not to take ARV therapy. • It is difficult but necessary to translate medical and scientific language into terms that lay people can understand. Importance of Treatment Literacy It is important for people considering treatment to understand how Anti retroviral Therapy (ART) works. HIV treatment is not limited to ARVs. Prophylaxis and treatment of opportunistic infections like Tuberculosis (TB) is essential. Treatment grams must include information about opportunistic infections. The knowledge that treatment for HIV exists provides hope for PLHAs and encouragement to people to learn their sero-status and seek out care. Health workers may not provide full information on treatment to PLHAs in time. PLHAs need to be able to make informed decisions. Treatment education supports advocacy and Information about HIV and treatment helps to reduce HIV- related stigma. Obstacles to Good Treatment Literacy • Gender inequality is an obstacle to treatment education and support services • Discrimination and negative attitudes towards people with HIV by health care providers. • Limited funding opportunities for community based treatment education programs 10 • • • • Lack of infectious disease doctors and other skilled health care workers Lack of access to up-to date information on treatment. Lack of affordable and available treatment. Lack of support for informal learning structures that have supported long-term, ongoing learning among women and girls 1.2.3 Modes of treatment literacy Participants shared information on various modes of treatment literacy used in their countries:  Kenya Women like to have small groups where they do merry-go-rounds, called “Chama” in the local language. Women‟s organisations also use village “barazas” (assemblies) where the chief can pass information to people.  Uganda Some NGOs take advantage of already organised groups and make arrangements to talk to them when they gather for their meetings.  Zambia Women work through women‟s groups in Churches called “circles of hope,” where women go around to various churches every week and reach out to mobilise other women over diverse advocacy issues.  Ghana Women in Ghana also use the Church group approach to reach out to women because the majority of women in the country attend Church services and it is easier to reach large groups of women of diverse backgrounds through the Church.  Rwanda Women in Rwanda use sports and skits in local languages to pass on information. This approach is particularly effective where women cannot read or write.  Ethiopia Women are targeted through community meetings and the coffee ceremony.  Swaziland Information is disseminated through community conversations and food distribution points.  Zimbabwe Messages are spread through fashion shows using support groups such as Models against AIDS.  Other Other modes of communication that were suggested were door-to-door approach, drama groups that go school by school or town to town, postcards and t-shirts, gatherings at pubs, restaurants and gyms as well as other informal gatherings. Discussion Q. One participant said she had observed that many people could not differentiate between ART and ARVs. A participant observed that ART programmes that were run by the Ministry of Health lacked sufficient follow up. “People have to collect their drugs from the hospital and it ends there, with no follow up, yet those who are getting their treatment from organisations like TASO are followed up.” Q. 11 A. Staffing is a major problem in African countries and it is important for PLHAs to be responsible and to work together as communities, rather than depend on follow ups by strained health care workers. A concern was raised that sometimes people that were on treatment discouraged others from taking it, for unknown reasons. Just as all other drugs, ARVs have side effects. However, it is important to have treatment literacy so that people can make informed choices about their treatment options. People should pass the right information to their colleagues and friends. There is a support group in Kenya called CC, where people that are on treatment are sent and it is not clear whether it is good or discriminates against PLHAs. The CC issue – there are diabetic and cancer clinics where people get specialised treatment. The CC is good because it helps to fight stigma in that people can walk into the site to get specialised treatment. Some people have become anaemic as a result of taking ARVs, but the hospitals neglect them, what can be done about this situation? Anaemia is an advocacy issue that the Kenyans should look at as a group and should advocate for change to take place. It is important to be proactive. Although some countries give free ART, they do not give free treatment of opportunistic infections. Both should be free. Is it fair that Africans should advocate from a second class citizen perspective? Routine testing is being promoted by UNAIDS where ART is being used. Q. A. Q. A. Q. A. Q. Q. A. 1.2.4 Treatment preparedness, a focus on women and children – Alice Bakunda – Mildmay The Mildmay Centre The Mildmay Centre provides comprehensive HIV/AIDS clinical outpatient care and training on different aspects of HIV/AIDS care. It has been open since September 1998 and is part of Mildmay International which provides HIV/AIDS care and training in many different countries. Why Focus on Women? Gender defines opportunities, roles, responsibilities and relationships for men and women. About 80% of infections are due to heterosexual contact. Infection rate among female aged 15-24 is 4 – 6 times higher than males of the same age range. More women get infected with HIV at an earlier age than men. This is possibly due to: Biological determinants, social cultural factors (lack power of negotiation), gender based violence, harmful traditional practices, economic factors (dependent, mostly not bread winners) and susceptible to poverty, which is one of the underlying causes of the spread of HIV. Why focus on children? There is great focus on children because of their vulnerability and most of them are dependants. Children with HIV are more vulnerable to repeated infections due to undeveloped immunity and thus Mildmay helps them in terms of accessing treatment and other needs. Differences between infected children and adults - Rapid progress of the disease due to undeveloped immunity; - Children have a higher viral load and have more frequent, recurrent invasive bacterial infections; - Opportunistic Infections (OI‟s) often present as primary diseases that are aggressive due to the undeveloped immune systems of children. 12 Note: Many children are now living to mid or late adolescence and more still to adulthood especially with the help of ARVs Preparing the ground for Treatment Although currently HIV/AIDS has no cure, there is good treatment of opportunistic infections and more still, the appropriate administration of ARVs greatly reduce the viral load, while enhancing the improvement of the individual‟s body immune system. Goals of ARVs treatment  To reduce viral load  Prevent rapid damage of immune system  Prevention of opportunistic infections  Improve the quality of life Importance of Treatment Preparation  Information giving  Life time treatment  Not a cure  Less accessible  Decision making  Assessment of social support system  Importance of preparation continued  Enhances Disclosure  Fosters Adherence  Encourages positive living  Empowers women and children to be vigilant for their rights Other than ARVs, preventive care is needed - Why?  Delays progression of HIV to AIDS  Delays the need for ARVs  Prepares client and providers for ARVs  Compliments ARV therapy  Builds on existing public health interventions and is achievable with the „Basic Care Package for the People Living with HIV. What else supports ARVs?  Prophylaxis treatment  The use of septrin that minimizes the rate of some infections such as - Malaria  Cryptococcus meningitis and fluconazole for preventing its re-occurrence  Nevirapine for both mother and baby  Post exposure prophylaxis - Having been exposed to risky body fluids for HIV  Patient preparation for Adherence  Ideally 2-3 sessions with counsellor and primary health provider before starting ART. The two main components of preparation are: establishing trust between provider and patient and patient assessment and introduction to the treatment and adherence program. Introduction to the treatment and Assessment of client  Discussion about patient‟s health, past experience with ARVs (or other long treatments) and adherence  Prior use of ARVs  The importance of adherence  Patient‟s living conditions and daily routine  Sources of social support  Whose agenda  Assess and understand patient‟s beliefs and attitudes about HIV disease, ARVs, preventive behaviour  Together with client identify potential barriers and ways to address them  Preparation follow up 13 Preparing individuals for ART ca not be done in one day, but requires follow up. Therefore, avoid information overload, use simple language and disclosure to significant others is essential. Time taken to prepare the ground for ARVs treatment, is never time wasted. Good team work is essential to the success of ARVs treatment and should therefore be nutured. Children and ARVs Children require special skills for:  Information  Explanations  Attention  Monitoring  Answering their questions  Freedom of Speech Challenges that children face  Change of care takers  Negative peer influence  Non or poor disclosure  Involvement of school health system – broken confidentiality  Drug handling at school versus home  Lack of good support and monitoring  Poor parent/caretaker‟s relationship Challenges in ARVs Treatment  Inadequate finance  Disclosure issues  Accessibility  Side effects  Cultural/religious beliefs Addressing the challenges  Update information  Communication skills  Working with family system  Improvement on income  Reduced prices  Positive attitude  Adequate Counselling Ethics of a good Preparer            K A M P A L A C I T Y Knowledgeable Approachable Monitoring Patient Accommodative Loving Available Confidentiality observer Interested Trusted/Teachable Yearning heart The presenter shared an experience of a couple that needed treatment. The husband opted to let the wife get the treatment first. However, the woman was still unhappy because she had an HIV positive child who could not enrol for treatment and that was affecting her. The moral of the story was that 14 there is need to thoroughly investigate patients in order to understand their individual situations – because in cases where mothers have access to treatment and their children do not, the women are likely to be affected by guilt and may end up taking decisions such as sharing the drugs, which may be detrimental to both the mother and child. The presenter shared another experience of a mentally ill patient whose relatives took her to a shrine because they thought it was due to witchcraft. The witch doctor ordered that she should not mix his medicines with western medication, hence she stopped taking her ARVs for three weeks, until another relative got concerned and intervened. It is important to be aware of cultural issues affecting the lives of patients, which could pose a challenge to access to treatment and adherence. Discussion Q. What is the best age to disclose to a child their status? In Nigeria, children have often innocently disclosed their status to their friends, resulting in stigma and some headmasters forcing the parents to withdraw the children from school, which is a form of stigmatisation. There is no formula for disclosing to children. They are individuals and this depends on their relationship with their carers as well as their levels of cognition. When a child starts asking questions, it is an indication that something is bothering the child. One has to consider the child‟s cognition etc. one should explain in simple language, that the child understands, that they have a stubborn infection that will not go away. Disclosure does not have to be instant simply because the child has asked, children should be prepared. Most women have found it easier to disclose their status to the child first. Do not respond to pressure, assess the situation and prepare the child accordingly. According to Uganda guidelines, at 12 years children should know their status, though preparation is still important. What is viral load? When and how can someone have a drug holiday? There are some practitioners who frown on holidays. It is not recommended for everyone but depends on one‟s immune system. This should be done in consultation with the doctor. You should have access to viral load and Cd4 tests because they enable one to know when it is time to resume taking drugs. Many people take the breaks because of the toxicity and side effects of medication. Many people, when they become resistant, have to switch medication and take a drug holiday then. One should be careful of how they conduct the holidays because if they do not, they could damage their immune system even more, so drug holidays should not be taken lightly. In Africa there is only first-line treatment and it is not easily available and expensive, so drug holidays are not recommended, particularly given that second line treatment is expensive and inaccessible, particularly in free government programmes. Beri explained that she had been taking drug holidays since 2000. She has been doing six months on and six months off, while monitoring her CD4 count and viral load. Q. A. How should viral load monitoring be conducted in countries where there are no standards? The pill count and ticking charts are some of the ways of self-monitoring, although this requires determination and discipline because some people tick their charts when they have not taken the medication. However, these do not help one to determine the viral load. How effective are the food supplements such as Golden Products, 21 Century, etc, that are being marketed to PHAs? Golden products, House of health and other food supplements are generally expensive and they are supplements but cannot substitute ARVs. A patient can go for both but it is important to take them in consultation with one‟s doctor. st A. Q. A. Q. A. 15 Q. Some children whose parents have disclosed their status publicly even without disclosing to them, have been stigmatised as a result of the parents‟ public disclosure. How prepared are schools to deal with such situations? It would be bad to disclose one‟s status publicly without disclosing to the child because the child experiences the consequences. It is important to communicate with children and prepare them for public disclosure. How does Mildmay handle sexual and reproductive health problems that affect women with HIV, e.g. cervix cancer etc? Mildmay only deals with the problem that a patient shares with the doctors, hence it is important for women to be open with their medical practitioners. However, patients requiring specialised treatment that is not offered at the centre are often referred to other specialists. A. Q. A. Women were all urged to take care of their anatomy just as they take care of their teeth. Very few women take pap smears and the majority wait until it is too late or when the doctor insists. Women were encouraged to take the pap smears at least twice a year. Gynaecological problems should be included in treatment advocacy and programmes and should be budgeted for just as TB testing and treatment is. 35 women that were part of a WHO mapping programme and did not know there was a cancer testing centre in their country were taken for tests and out of those, 17 had cancer cells detected and one had developed cancer beyond treatable levels. Women need to know how vulnerable they are. There are no pamphlets in the hospitals. There is limited information about sexual and reproductive health. 1.2.5 Treatment activities in Southern Africa Representatives from three Southern African countries, Botswana, South Africa and Zimbabwe, shared information about treatment preparedness in their respective countries. Zimbabwe The country has a national treatment programme run by the Ministry of Health and Child Welfare (MoH&CW) through its AIDS and TB unit. The programme is in all the country‟s central hospitals and efforts are underway to roll it out to provincial health centres. Although the target was to treat 117000 people, this has not been met due to foreign currency shortages that have made it difficult for the country to procure drugs externally or to source materials required to manufacture the medicines locally. As a result, there has been a huge ARV shortage in Zimbabwe. Foreign currency shortages have forced the Reserve Bank to prioritise allocation of foreign currency to businesses at the expense of treatment. In addition to the government programme, NGOs such as Medicine San Frontiers (MSF) and Mission Hospitals are also conducting treatment programmes e.g. the MSF programmes in Bulawayo and Chitungwiza have been beneficial to women as they used PMTCT as an entry point to treatment. The private sector has also come up with workplace policies that include treatment programmes for their employees. Medical insurance companies have also introduced schemes that incorporate treatment packages for their clients. There is, however, concern for those in the informal sector and those that are unemployed as they are not covered by some of the programmes. There are, however, challenges to treatment. For example, the government recently embarked on a national clean up exercise code-named “Operation Murambatsvina” or “Restore Order,” that was aimed at clearing slums and ridding the city centres of criminals. However, this resulted in the displacement of many people and disrupted on-going treatment programmes. Displaced people have now to travel long distances to access treatment and most of them, particularly informal traders, lost their sources of livelihood as a result of the exercise. Sadly, a significant number of the affected were women. 16 The country recently amended the constitution to reintroduce the Senate. This subsequently resulted in Senate elections being conducted on 26 November, 2005. Although the majority of Zimbabweans were against the elections, activists felt that since the elections were going ahead, it was prudent to field a candidate who could represent PLHAs and influence policy at the highest level. A letter was also written to the President, Robert Mugabe, requesting a special seat to represent the interests of PLHAs. South Africa – Nomfundo Xhwikini The Treatment Action Campaign (TAC) has been largely involved in treatment activities. A great deal is being done through workshops but very little information is trickling down to people that are living in shacks. Poverty is disrupting treatment programmes as some people sell their drugs for money. Others want their CD4 count to drop so that they can continue to get government grants. There is also a problem of adherence due to non disclosure as a result of improper and erratic counselling. Women‟s sexual and reproductive health is also affected as there is no access to tests such as pap smears. Botswana – Cindy There is a national programme where the government rolls out ARVs to PLHAs whose CD4 count is below 200. Children also receive the ARVs. There is also a PMTCT programme that is given to expectant mothers during the seventh or eighth month of pregnancy. Their children are then tested for HIV at one month, three months and sixth months. There are special separate clinics for children and adults. In addition, TB prophylaxis is available and there are nutrition initiatives where government gives food to HIV positive people that cannot afford a proper meal. However, while the programme sounds glossy, it has its shortcomings. For instance, ARV drugs are not available in all the cities and villages hence some women have to travel long distances to access the drugs. Most of the affected women are not economically empowered and therefore have to ask their partners for transport money, placing their access to treatment at the disposal of their spouses. In addition, women‟s routines as carers are disrupted because it can take them as long as a day to get to the health facilities that offer treatment. In some cases, health facilities do not have enough doctors and nurses due to the brain drain. The issue of sustainability is also a matter of concern because sometimes patients are told that part of the regimen has not arrived so you are given drugs for a few days and told to come back for the rest of the supply some days later. Further to this, the high level of stigma in the country has prevented the uptake of the programme. Monitoring of patients is done through CD4 and viral load testing every three months. In wrapping up the presentations, Gcebile noted that the three speakers had captured the general scenario in most Southern African countries. Southern Africa does not yet have the equivalent of East African Treatment Access Movement (EATAM) hence treatment activities are splintered. 1.2.6 Treatment activities in East Africa – James Kamau EATAM is the regional sub-branch of Pan African Treatment Access Movement (PATAM). It covers countries such as Rwanda and Burundi although they identify with the Francophone region for other activities. One of EATAM‟s major achievements was their advocacy work, which resulted in the scrapping of tariffs on drugs in the East African Community. East Africa formed a regional trading block early this year, which was going to result in tariffs on trade on medicines. As a result of EATAM efforts, including bussing people demonstrating in Arusha, Tanzania, tariffs on all medicines were removed. Kenya currently has 47000 people on ARVs through NGOs like MSF and government programmes. The number of people on treatment has started to drop because of the cost of OIs which is not covered under such programmes. The government programme caters for less than half of the people on treatment, others are on NGO and PEPFAR-funded programmes. These funds are temporary and there is need to look at sustainable ways of continuing treatment even after the funds have dried up. The brain drain has also had its impact on health care personnel and facilities. 17 1.2.7 The CRP Processes in East and Southern Africa Two presenters shared different experiences in selecting their CRP representatives and administering the Collaborative Fund. The Southern African CRP process – Gcebile Ndlovu Gcebile, who sits on the Southern African panel as a representative of ICW, said the regional CRP first met in Malawi after the Southern African meeting that took place in Zimbabwe in March 2004. After the Malawi meeting they recruited a CRP co-ordinator who had been involved in the process and was therefore familiar with the CRP. They also had a meeting in Namibia in early August, prior to which the CRP sent out a call for proposals within the region. They, however, realised after the call that some countries were left out. It is not so much that the CBOs did not require the money, but we need to look back and see why they did not apply and we believe it could be because the information did not reach them. The Namibia meeting was to review proposals for the disbursement of US$180 000 with the maximum. More than 200 proposals were received. A spot-check among participants at the workshop revealed that only one representative from the four Southern African countries that were represented knew about the collaborative fund. There were no proposals from Botswana and Mauritius, although it was decided that the Seychelles proposal would not be funded. A total of 23 proposals got grants and although the money was disbursed in July, only nine organisations have given feed back on how they have been using the money. Gcebile requested a meeting with workshop participants from Southern Africa during breakfast to discuss the grant-making process. David noted that there had been problems disbursing the money to Southern African grantees after decisions had been made concerning funds, though in other regions it takes about eight weeks. The East African process – James Kamau A workshop of eight East African countries was held in 2005, during which the CPR was formed. A steering committee for EATAM was elected, from which CRP members were elected and a coordinator appointed. Calls for proposals were made through organisations. More than 150 proposals were submitted and 27 have been approved to receive grants totalling US$200000. Factors considered were issues such as the potential impact that the project was likely to have. Some countries got special attention such as Sudan, which had two proposals but needed attention because of political instability. Six Kenyan (two urban and four rural), seven Ugandan and seven Tanzanian organisations would receive funds. Three of the Tanzanian organisations were women‟s organisations. Those that were not successful received letters of regret. Some were approved but further details were required, which has since been forwarded. Many lessons were learnt from the Eastern African experience. Some organisations have become professional proposal writers who did not read the fine print but reproduced old proposals and did not get any grants. The maximum grant was US$10 000 and in some cases only the amount of money for treatment literacy requirements was granted. Discussion Some people did not apply for the grants when they saw the call for proposals because they could not interpret the information. In Southern Africa, networks of people living with HIV were asked to print hard copies for their members, taking cognisance of the fact that not all CBOs had access to e-mail and internet facilities. It is not clear if this was done. There is no treatment for PLHAs in Sudan, e.g. in the participant‟s area, there is only one VCT facility and two counsellors. 18 There are many issues in Sudan given the instability. Treatment literacy is very important for people in Sudan, even if treatment may not be available yet. More Sudanese organisations could apply for future rounds of funding. There was also a fundamental problem about Sudan, for instance there were no accounts. Some people were opening accounts in Uganda and since restoration of peace, the country could soon have banks. Men were encouraged to start groups of men living with HIV and AIDS. Did the grant making processes consider the special challenges facing women as care givers and as vulnerable groups as well as the rural people? Prioritisation of treatment issues by region Participants were divided into four regional groups. An additional group that would focus on young women was formed. The groups were tasked to prioritise treatment needs per region. They were also urged to think of women that were not represented at the workshop and try to bring up the issues that affected them. They were to select leaders and present in the morning. 2. DAY TWO 2.1 Prioritisation of issues by region East Africa (Elizabeth) 1. Mobilisation of women and information dissemination Need for:  Information sharing  IEC  Ignorance eradication 2. Cultural and religious beliefs Include:  Widow inheritance  Female Genital Mutilation (FGM)  Negative influence by religious leaders  Negative attitudes towards and difficulty in negotiating condom use 3. Economic constraints faced by women  In many cases, women are economically dependent on men and have to depend on money from men for access to: Transport, drugs and diagnostics and nutrition 4. Lack of skills among health service providers and inaccessibility of health services This is usually due to:  Geographical challenges  War  Limited number of service providers  Limited health facilities and equipment 5. Stigma and discrimination This comes in varying forms such as:  Self-stigma  Stigmatisation by the community  Family stigma 6. Political barriers and lack of commitment in dealing with women’s issues  Corruption  Diversion of funding to other programmes 7. Greater involvement of HIV positive women in provision of care programmes. 8. Lack of appropriate skills and facilities to address the needs of women with disabilities and women that are mentally handicapped, who are vulnerable to varying forms of gender violence such as rape, beatings etc. 9. Lack of women in leadership committed to addressing issues affecting women with HIV and AIDS 10. Vulnerability of women with special needs 19 For example,  Commercial sex workers  Women that are married to men in the security forces such as the police force and the army  Women in prisons  Women in refugee camps, internally displaced people‟s camps and war-torn areas. Southern Africa 1. Displaced women face barriers to treatment due to varying issues such as:  Unemployment  Drug resistance – although some of the women are on free treatment programmes, treatment is disrupted when they are displaced, resulting in the possibility of resistance when treatment resumes  Poverty – results in financial constraints that make it difficult for them to access diagnostics. 2. Treatment of opportunistic infections- Although treatment programmes have been initiated in most countries, often the focus is on ART and individuals have to pay for treatment for opportunistic infections. 3. Stigma by health providers 4. Meaningful involvement of women and men living with HIV and AIDS- This should not just be greater involvement but should actually be meaningful involvement. 5. Female condom training workshop for men and women 6. There should be gender mainstreaming in all treatment issues. 7. Multi-sectoral approach for example, beauty clinics for positive living. 8. Promotion of couple role models in different communities both religious and traditional. 9. Involvement of differently abled women and girl children that are marginalized. 10. Communication - Most materials are written in English and most messages are disseminated in English, thereby creating a language barrier. Messages should be communicated in languages that are suitable for the target audience. West Africa The group divided the presentation into two parts, that is, the factors that fuel HIV infection among women and barriers to treatment by women. Factors that fuel HIV infection 1. Early marriages 2. Testing of brides by father-in-laws When a young woman is married, her father-in-law is expected to sleep with her before her husband, thus exposing her to HIV infection. 3. Offering of wives and young girls as appreciation to male guests In some cultures, a man may offer his wife or daughters to sleep with a guest as a sign of appreciation. Refusal to sleep with the woman is an offence that may result in animosity. 4. Community expectation of early childbirth. Girls as young as 15 years of age are encouraged to have children out of wedlock to prove their fertility. 5. Wife inheritance Widows are expected to be inherited by their brothers-in-law and those who refuse to engage in the practice are often ostracised by the family and community. 6. Cultural practices that encourage young girls to engage in prostitution. Girls as young as nine years of age are sent by their mothers ostensibly to sell peanuts and other wares, yet in reality they will be hawking their bodies. The money they make from these activities is kept as their dowry. 7. Widowhood rites Deceased husbands‟ brothers are encouraged to have sex with the widow. 20 8. High-handed attitudes of brothel owners and pimps to sex workers. Commercial sex workers are often subjected to cruel treatment and forced sex by brothel owners, who own them and often take the bulk of the profits made. 9. Abuse of young girls and boys that are orphaned as a result of HIV. This abuse comes in various forms such as denial of education, sexual abuse etc. and often forces the children onto the streets and into gangs, where they are susceptible to crime and other forms of abuse. 10. Female Genital Mutilation Barriers to treatment access 1. Stigma and discrimination in health centres There is an assumption by health personnel that women with HIV must have contracted it through commercial sex work. As a result, positive women are subjected to dehumanising treatment and negative attitudes. 2. Poverty In many cases women have to travel great distances to the nearest health centre and often have to get money for transport from their husbands. 3. Negative attitude towards free treatment because of the belief that whatever is free is not good led to initial resistance to free treatment programmes in Ghana. 4. Language - Treatment literacy is conducted in English and that limits access to information for women. It is also a limitation in accessing treatment. 5. Patriarchy, which results in male domination, particularly in decision-making processes. In many cases, women need their husbands‟ consent on any decisions, including those that affect their bodies such as access to treatment. If a husband says his wife should not get treatment, his word is law and she has to go without it. This is fuelled by women‟s economic dependence on men. 6. Men feel insecure when women are being empowered, so they impose limitations on the women. Young Women’s group 1. Lack of access to ARV treatment including treatment for OIs and prophylaxis. Many women do not have access for various reasons. This is usually due to lack of economic empowerment as most young women live with their parents and are economically dependent on them. Lack of meaningful involvement and active participation of young women in developing, implementing and evaluating policies both locally and internationally. Although many young women have access to various platforms, they only attend as participants and members because their contributions are not taken seriously, they are discouraged from expressing themselves and as a result, their issues are not addressed. Inadequate information on treatment and services. People do not know the options that are available to them following HIV tests. In addition, many young women lack information about diagnostics such as CD4 count and viral load tests. Further to this, although VCT is free, diagnostics are not and that constitutes a barrier to treatment. Lack of economic empowerment. Many young women depend on their parents, sugar daddies, boyfriends etc for money and that makes them vulnerable to abuse and makes it difficult for them to negotiate safe sex. In addition, their access to treatment is at the mercy of their benefactors. Lack of young women friendly health services. 2. 3. 4. 5. 21 Most clinics and health facilities are manned by older women and men that usually have a judgemental attitude towards HIV positive young women. 6. Young women have not been empowered to know their rights. Some young women are caught between a rock and a hard place because if they disclose their status, they will be stigmatised, yet if they do not, they are caught up in situations where people demand unprotected sex. In some cases, cultural practices thrust them into situations where they find themselves being married off into polygamous marriages, yet they cannot disclose their status and if they do, they face the wrath of the man and his other wives. Inadequate access to sexual and reproductive rights. For example, young women are not informed of their options pertaining to child bearing, female controlled devices, abortion etc. Decisions concerning HIV positive young women‟s sexual and reproductive rights are made on their behalf. Culture and traditions that undermine young women Health workers’ attitudes towards young women Often young women have to contend with the condescending attitudes of judgemental health workers. Inadequate paediatric care, which affects young mothers This mostly affects young single mothers who feel guilty about taking treatment when their children are not getting any of it. The presenter shared a story on how a friend of hers was advised to sacrifice her child and focus on ensuring treatment for herself. Usually, in most cases women end up sharing their treatment with their children because they cannot neglect the children‟s health needs, resulting in complications such as resistance for both the mother and child. Stigma and discrimination at the workplace, at home and in the community. 7. 8. 9. 10. 11. Discussion The presentations were discussed further in plenary and the views expressed were as follows: At the end of the day, men are the decision-makers and as long as they are ignored they will stifle our progress towards access to treatment. It is important to consider children as they do not have the capacity to make informed choices concerning their treatment options. Uganda has a problem with their support groups because they offer treatment to young children. Young adolescent mothers cannot be included in the children‟s treatment programme yet they are excluded from the adult programmes. There is need to address the gap of lack of treatment for young children. The practice of raping virgins to cleanse men who are HIV positive and raping girl children to get rich should be condemned and prohibited. Some of the people are raped by their fathers. Also in most cases the wives collaborate in the activities and do not report to the police for fear of losing the man who is the bread winner. When free treatment was introduced in Ghana, there was resistance because of suspicions of anything that comes free. As a result, people from Togo would cross the boarder to access the treatment. As a result, the government of Ghana had to impose a $5 token charge for CD4 count tests etc, to encourage people to take up treatment. Since then, uptake has improved. On issues such as wife –inheritance, there is need to seek ways of legal recourse to protect women from such cultural practices. 22 Women should place demands on health workers and take the initiative to bring about change, as change will only come about when they assert themselves. Some countries such as Nigeria have laws to protect women from widowhood rites, but the women do not use the laws to their benefit because they lack information. Women prisoners have inadequate access to treatment because of the bureaucratic prison systems that make it difficult to reach them. Zimbabwe recently introduced the Sexual Offences Act, which can protect women from sexual abuse and may be used to prosecute anyone who wilfully transmits HIV to another person. However, the burden of proof is often on the woman, who has to prove that she was not HIV positive prior to the rape. Sometimes women living with HIV discriminate against each other, for instance, those that are on treatment discriminate against those that are not and it is important to be united and fight with one voice. It is important to equip women in positions of power with information so that they can support advocacy efforts and positively influence policy change. Women tend to be caregivers while not caring for themselves. Women should be encouraged to focus on themselves as well. You cannot help another person unless you have taken care of yourself and are strong enough to look at the next person. ICW consciously chooses to focus on the rights of women, although it involves men in its activities. However, it will not stretch its limited resources to cater for men. This is an attempt to give women space so that they can look at their issues as positive women. Oftentimes young women are excluded from treatment programmes because they do not meet the criteria for treatment, for instance, they are not leaders, they do not have children etc so they are not prioritised as people needing care. Ghana is facing the challenge of forced enslavement of young female virgins in Fetish shrines. The virgins are often enslaved for the atonement of the sins of their families. Some of the girls are taken from the age of two. The Fetish priests tend to marry the girls and sexual abuse is often rampant at the shrines. Recently Care bought back some of the girls. However, although the practice is rampant, it often remains undetected because of its secretive nature. In addition, it is supported by male leaders. Women should use community leaders in their societies to influence change, particularly in fighting oppressive customs and cultural practices. For example, in Kenya, Policy Project is working with community leaders, most of whom are men, to undo some of the cultural practices. It is not enough to empower women with information because they will return to the society that insists on the same cultural practices. Grandmothers, who are caregivers and raising orphans, are often neglected at various platforms, yet they also need to be equipped with information, so it is important to ensure their participation. Women are still afraid to talk about issues of sex because it is taboo, as a result, many sexual and reproductive health issues get inadequate attention because they are glossed over. Such issues should be discussed in more detail. It is important to emphasise post-exposure-prophylaxis (PEP) and empower young girls about such options so that they can seek early treatment in the event of rape and other forms of assault that expose them to infection. For example, a seven year old girl was raped by her teacher but instead of reporting to her mother, she hid her pants out of fear. Due to this, the case was discovered and reported late, resulting in the girl accessing PEP after three days. Had she reported earlier, infection could have been prevented through PEP. 23 We should advocate for female controlled devices such as microbicides, which will empower women without the need for negotiation, unlike the female condom which is visible and the male condom which requires the consent of the male partner. Women should be teachers at home, in the community, at the market places and at workplaces in advocating for use of condoms. The dissemination of treatment and prevention information should be incorporated into their lifestyles. In Tanzania families are not open to children about sex and usually discussions come across as threats on the consequences of early pregnancy. In Uganda, when VCT was introduced, it was open to all, however, an evaluation revealed that young people were not accessing the services because they feared meeting their parents at the facilities, so a youth-friendly corner was introduced and the staff especially trained to handle youth issues. It is also run predominantly by young people, which creates a conducive environment for communication as they are peers. 2.2 Plenary discussion on Advocacy Definitions of advocacy This session was to ensure that participants were at the same level of understanding of what advocacy is and how it can work for them. Participants defined advocacy as follows:       Efforts, plans and actions to have a positive impact; Representing people, speaking on behalf of voices that cannot be represented with the aim of bringing about change; Advocating on behalf of people that cannot stand for themselves in order to influence policy/decision makers; Appealing to policy makers in non-violent ways; Bringing about change on issues that affect our lives; Influencing policy change, challenging the status quo. Difference between advocacy and IEC  Providing information, which is one of the tools of advocacy;  IEC is for giving information, while advocacy is influencing policy to bring about change;  IEC is a means of communicating advocacy issues;  IEC is dissemination. Difference between practical needs and strategic interests of women  Strategic needs looks at representation of women living with HIV such as meaningful representation. Needs touches on cultural issues, negotiation of safe sex etc;  Practical needs are short term goals and strategic interests are long-term goals;  Practical needs are short-term everyday needs that benefit both men and women. It relieves women of some responsibility but does not change any gender inequalities that exist between men and women in society. For example, needs such as a crèche, water, treatment literacy etc;  Strategic interventions go beyond the practical needs and try to change the structure of inequality. It was noted that many of the advocacy issues discussed focused on practical needs e.g. home based care. While these issues were important, they did not necessarily change the imbalances between men and women that exist in society. It was important therefore, to look beyond practical needs to long-term strategic interests that change the status quo. For example, access to food and treatment is a practical need but 10 years from now, in order to change the imbalance, equal employment opportunities would be the strategic interest, which should be addressed. Changing structures would require women in strategic positions so that they can influence policy. 24 2.3 Advocacy experiences and ways forward – Participants were divided into the same regional groups to discuss advocacy needs in their regions. They were required to discuss: 1. What is advocacy? 2. How can advocacy go beyond a focus on women‟s practical needs to address gender inequality? 3. What are your advocacy experiences, successes and challenges? 4. What is the way forward for advocacy for ACTS in your region? Report back by groups Southern Africa Definition of advocacy Advocacy is:  Lobbying towards influencing policy.  Action geared towards policy change for a targeted group.  Representing the voiceless through consultation. Through this lobbying we need to stand together as a united force in order to have impact. This includes training of members to become activists that can strengthen our efforts. The difference between advocacy and IEC   IEC is not a tangible solution. It denotes giving information for practical change but the results cannot be quantified. IEC is a tool that can always be changed whereas advocacy is a binding strategy through permanent policy change. How can advocacy go beyond practical needs to address gender inequality?     Economic empowerment is very important as women are facing economic challenges from which most of their problems stem. For meaningful change to be effective, women need to become policy makers. Change should be community-driven and not donor-driven. E.g. in Namibia women are forced to make crafts that do not sell and this does not resolve their economic problems in the end. There are gaps that exist as a result of governments not effecting the commitments and declarations they sigh e.g. SADC declaration, AIDS emergency declaration by the Zimbabwean government. Advocacy challenges  Women are not allowed to set their own priorities due to lack of consultation. Priorities are imposed on women.  Lack of understanding of gender inequality by both men and women. This should be addressed through gender-specific training. Advocacy successes  In Swaziland there are gender focal points  Zimbabwe has introduced a gender policy The way forward  Health centres that offer treatment programmes should be manned by PLHAs because with adequate training they can understand each other‟s challenges.  Often VCT centres are manned by people that are HIV negative and this discourages people from getting tested.  Treatment literacy should be conducted in local languages and tools that are effective such as radios should be used. 25     There is a need to ensure that treatment reaches all people including those at grassroots level. HIV positive role models can influence other people to get tested and seek treatment. There is need for innovative ways to disseminate information, e.g. models against HIV and AIDS to reach out to young people that are living with HIV and AIDS. Technical and financial support should be given to PLHAs. East Africa group What is advocacy?  Advocacy is the systematic process of identifying and analysing issues affecting women‟s rights towards effective planning to influence policy makers to achieve positive change. It is a process of bringing about change. The difference between advocacy and IEC  IEC is one of the tools of delivering advocacy messages to mobilise partners and alliances to strengthen the advocacy agenda.  While IEC is a tool that is used to support advocacy, advocacy is a process that leads to change. How can advocacy go beyond practical needs to address gender inequality?  HIV positive women should be nominated into Parliament, particularly the East African Community Parliament. Women should be in leadership positions and not just at implementation level.  Women also need to be economically empowered. Advocacy experiences  Female genital mutilation  Widow inheritance  Stigma and discrimination in the workplace, e.g. loss of employment for disclosure of status.  Gender violence.  Stigma and discrimination against HIV positive children. Advocacy successes  VCT has become accessible for people to know their sero-status  TB treatment  Treatment of OI‟s.  Disclosure  Availability of ARVs, although this still needs to be made more availed at grassroots level. Advocacy challenges  Some communities are not ready to change as reflected by resistance to cultural change.  Not all women have access to treatment.  Policy makers are not reachable.  Stigma and discrimination still exist.  Poverty remains a major challenge in developing countries.  Advocacy remains a challenge in war-torn countries especially Rwanda and Sudan.  Accessibility of health services at grassroots level is still poor.  Inadequate information flow.  Inadequate community mobilisation, lack of voluntarism. Way forward  Constitutions to address issues on women broadly  Policies on HIV and reproductive health to be enacted and implemented to address issues affecting women and children.  Policies addressing the economic status of the women should be enacted and implemented.  Advocate and lobby for representation of HIV positive women in Parliament. 26  Strengthen partnerships with organisations and bodies to help address the above issues e.g. with UNAIDS, UNICEF and the European Union Parliament. Discussion The issue of an HIV positive woman representative in Parliament has come up in all the groups, but some constitutions place age restrictions on people. To enter into parliament in some countries people have to belong to political parties and once one goes into party politics donors may withdraw their funding because they do not support political activities and it is difficult to divorce activists from their political activities. Rather than get into parliament, in cases where there are restrictions, activists could get into strategic alliances and lobby organisations such as AWEPA to represent the issues of women living with HIV. In addition, there are organisations of women parliamentarians such as the Women in Politics Support Unit (WiPSU) in Zimbabwe, through which positive women can lobby. Representation should go beyond Parliament into regional bodies such as SADC, the East African Community (EAC) and the African Union (AU). Positive women should lobby to be represented as a special group as has been done for women with disabilities in Uganda, so they do not necessarily have to join political parties to ensure parliamentary representation. A Kenyan activist asked a minister about the possibility of an HIV positive man and a woman to represent their needs in Parliament but was told that many people who disclose their status are not skilled to represent such issues in Parliament. There may be need to invest in equipping activists to represent the interests of PHAs at that level. Participants should report back about the workshop to other activists in their countries when they return home. Possible solutions Participants shared practical experiences of how their advocacy activities were having an impact in their communities.  Public Personalities Against Aids Trust (PPAAT) in Zimbabwe has been working with captains of industry and commerce as well as leaders at various levels by lobbying them through breakfast meetings during which they get doctors to disseminate information about treatment and lobby for policy changes. This has resulted in the introduction of workplace policies that incorporate treatment for employees. The organisation has also been working with women that are living openly with HIV to testify about how treatment has worked for them. Beauty clinics for positive living are also hosted for women that cannot attend workshops but are role models that influence policy. During the clinics, treatment literacy is conducted. The organisation has also brought pastors together to discuss issues of HIV and target pastors‟ wives through the beauty clinics, through which information cascades to other women. In Tanzania women with disabilities are marginalized and there is a need to target them with treatment messages. In Namibia, members were encouraged to go on a school speakers‟ programme where they targeted about 100 schools to discuss HIV and AIDS. The outcome was the formation of HIV and AIDS clubs at the schools and these have been effective vehicles in disseminating information to young people. Namibia has phone-in radio programmes where treatment messages can be disseminated in local messages. Parliamentarians can be used to make the programmes effective because of the influence they have as chosen community leaders.    Facilitators’ remarks The facilitators noted that although the participants had done a great deal of work in identifying issues, their goals were over the top and may not be achievable after the workshop. Participants were tasked 27 to prioritise three issues from the previous day‟s discussions but produce an advocacy plan for one issue. Discussions Q. A. What is the difference between a policy and law? How binding are policies on government? A policy is legally binding. It requires a legal environment that supports that position. It is supported by programmes and a budget that make it possible to implement. Anyone who is in a position to make a decision that affects our lives is a policy maker. Policy-making is not limited to political power. For example, changing of opening hours at a clinic to meet the needs of working people is a policy change. 3. DAY THREE 3.1 Press statements Two draft press statements were discussed in plenary for release on World AIDS Day, 01 December 2005. Comments on the two statements    The Ugandan first lady may have said what she said, but she has been very supportive in advocating for protected sex and access to treatment. She is also the patron of Mildmay. Churches are also advocating for condom use and have been supportive of prevention programmes. It is important to establish if Fezekile is comfortable about the press statement and the use of her name. 3.2 Priorities for advocacy Following group work the participants presented the following priorities. Young women Three priority issues  Lack of active involvement and participation in policy making.  Lack of access to treatment.  Lack of sexual and reproductive rights. Key priority  Lack of meaningful active participation of young women living with HIV in developing, implementing and evaluating policies and programmes at the leadership and management levels. Target audience Primary audience  Parliamentarians Secondary audience  Religious leaders both Muslim and Christian  PLHAs organisations  Local and international NGOs that would assist them to reach parliamentarians Goal  To ensure that there is meaningful participation 28 Objectives By the end of 2007, at least 10% of young positive women should have been trained in developing, implementing and evaluating programmes and given leadership and management positions internationally, regionally and within local structures. Alliances  PHLAs networks  Doctors and healthcare providers  Individual champions, i.e., icons that can champion the cause  National and international NGOs  Women‟s organisations Opponents  Existing HIV/AIDS organisations  Traditional leaders because of diverse cultures and patriarchy  Politicians  Religious leaders e.g. Muslims  Young women Strategies  Use of dialogue with primary and secondary audience  Use of the media  Petitions  Civil demonstrations Message  GIPA provides a starting point for the involvement of young women living with HIV in activities that concern them but in reality involvement is not enough. Participation means a more active contribution as outlined in the goal.  GIPA also does not specifically acknowledge the role of women and even less so the role of young women. At present, young women are less empowered and more disadvantaged in terms of achieving the goals.  Young positive women have to be empowered to ensure their voices are heard and are seen as an integral part of any solution. Comments on presentation The issue is good but it is too broad. Meaningful involvement should be narrowed down to something more measurable. For instance, the issue is really access to treatment so they could advocate for meaningful involvement in the context of access to treatment and care for young women. It is important to be aware that patriarchy divides us and we have to be prepared. The young women that attended the ICW young women‟s dialogue from Uganda and Kenya are fired up despite their HIV status and have placed issues affecting young women with HIV on the agenda. 29 West Africa Three issues  Economic empowerment  Lack of treatment literacy  Harmful cultural practices e.g. widow inheritance, offering women, prostitution Key issue  Economic empowerment; poverty reduction Target group  Commercial sex workers because they are more vulnerable than all the other women. Need  Financial empowerment through income generating projects. Change  Better finances to meet their needs for food, drugs, clothes and shelter Goal  To economically empower CSW to reduce their vulnerability and financial dependence on the sex trade. Objectives  Educate them on sexual and reproductive health  Rebuild and restore their self-value, esteem and confidence  Equip them with skills to generate income  Make them self-sufficient Steps         Identify NGOs working with sex workers Hold discussion and sensitisation forums with these NGOs Identify CSW through these NGOs Sensitise the CSW and identify the skills and trade they want to learn Provide these skills and work tools for them Follow up and monitor their development and progress Evaluate the whole process Learn from mistakes and improve Needed resources  Mobilisation skills  Advocacy skills  Money Comments on the presentation  It may be more feasible and empowering to advocate for the legalisation of prostitution rather than the eradication of commercial sex work, which has been in existence for a long time. Most young women engage in some form of sexual exchange when pushed to the limit although they do not necessarily go onto the streets. A more long-term solution may be to equip the women to protect themselves against abuse. It is important to involve men in the fight against commercial sex work as they are the customers that perpetuate the trade. You can get someone out of the ghetto but you cannot get the ghetto out of them. Commercial sex work may be their chosen profession and it is therefore important to focus on empowering the women to protect themselves   30     Zambia has a centre for reformed CSWs that underwent skills training but most of them still return to commercial sex work. Not all people that are on the streets are there for the money, some are there by choice but have access to financial resources. ICW Representatives’ views -Contributions from the participants reflected judgemental attitudes towards CSW‟s. We are trying to mitigate the impact of HIV on HIV positive women regardless of their background, sexual orientation, profession, lifestyle etc and it is a shame that we cannot get the identities of all HIV positive women in one room. Whether you are a CSW or not, at the end of the day you are a woman. If you feel CSWs should not be protected, at the end of the day, it comes back to you. Your partner may buy unprotected sex then infect you. It is therefore important to think about these issues. It is important to bring CSWs on board in our activities. East Africa Three priority issues  Community mobilisation for treatment literacy  Cultural and religious beliefs  Committed women leadership Key issue  Lack of treatment literacy among HIV positive women in East Africa Solutions  Mobilise and give women information that will empower them to overcome stigma and openly seek treatment.  HIV positive women will be empowered to know about their sexual reproductive rights (protective measures).  Mobilise HIV positive women to strengthen positive health and living. Goal  All HIV positive women will be treatment literate. Objectives All women will be able to:  Disseminate information about treatment.  Overcome stigma and discrimination associated with drug taking.  To fund ways of addressing barriers to access of health services. Target group  Ministry of Health  Medical personnel  Women parliamentarians  Media  Ministries of Labour, Education, Cultural and Social Services  CBOs  FBOs  Hospital and family health institutions  NGOs Opponents  Men (majority)  Religious leaders  Some churches  Some cultural and religious institutions Alliances  NGOs  CBOs 31           FBOs TBAs Policy project makers Local government Leaders Some Churches Media Women Lawyers‟ Association UN Agencies UNICEF Strategies  Resource mobilisation  Inform and seek support from alliances  Human resources and a taskforce to organise periodic meetings  Data collection, facts and research  Monitoring and evaluation  Community outreaches  Breakfast meetings for urban-based leaders Implementation  Through media o radio announcements o briefings o petitions o debate o talk shows o press releases   Peaceful demonstrations o diplomatic demonstrations Panel discussions o policy makers o audience IEC o   effective use of local and simple language  Proposal writing to cover advocacy costs. Call meetings for stakeholders o agenda o sharing o form a taskforce Schedule frequent meetings Report writing Monitoring and evaluation    Comments on presentation    Objectives should be SMART. The objectives should have a specific time-frame and should be measurable. Not all targeted people should be women. It is possible to have committed men that are more sensitive and forthcoming than women. So alliances should not be confined to their sex. 32 Southern Africa Three priority issues  Sexual and reproductive health rights  Treatment literacy  Stigma and discrimination Key issue  Sexual reproductive health and rights  Women in general are ignorant and unaware of their sexual and reproductive health rights. Goal  To ensure women‟s access to sexual and reproductive health rights, information and education. Objectives  To conduct 40 sensitisation meetings in the Southern African region on sexual and reproductive health and rights for one million women by November 2006. Target group *Multi-sectoral approach  Umbrella bodies – NGOs  Human Rights activists  Line ministries Alliances  Regional organisations  CBOs  Media  National networks  ASOs  Legal advisors  Men‟s forums  Donor community Opponents  Law and policy makers  FBOs  Competitors  Traditional healers Action plan Activity 1. Consultation with stakeholders 2. Organise meetings 3. Conduct meetings 4. Develop M & E tools and reporting guidelines Documentation by country and region Responsible person ICW ICW ICW ICW ICW Time Frame March 2006 April 2006 June – Nov 2006 May 2006 January 2007 Resources Finances Finances and assistance Finances and assistance Finances and assistance Finances technical technical technical Comments on the presentation  The objectives should be realistic, e.g. one million people is a bit unrealistic.  Each country within the SADC region will have five workshops and it is possible to reach a total of 1 million people within the 14 SADC countries over the specified period. 33 3.3 Explaining the Collaborative Fund – how to access funds Gcebile and Michelle The process started with a rain check on the number of participants that had written successful proposals, that is, those who had managed to write proposals that secured funding. Only one participant raised her hand. Participants were urged to recognise that the workshop usually took about two days though in this case it would be done over 45 minutes. The aim was to equip them to write effective proposals to secure funding from the Collaborative Fund. Many of the Southern African proposals did not follow the guidelines yet these were clearly outlined in the call for proposals. Some of those that attempted to follow the guidelines provided more information or much less information than was required. Some of the organisations did not give correct or truthful information, resulting in the rejection of the proposals because the CRP did not want to get into a relationship with dishonest grantees. The proposals will be reviewed by a CRP compromised of people that know the applicants and their organisations hence it is important for them to be truthful. The proposals also gave a larger picture of the activities that were taking placing within the region. On the other hand, it was possible to pick out organisations that were formed specifically because they heard about the project and the availability of money. The Collaborative Fund has US$200000 available for women and children and the aim of the process was to train participants to write proposals so they could benefit from the fund. Selection of CRP – Lillian Lillian shared the draft criteria for the CRP that had been drawn up by the Planning Committee (PC). Participants were free to make changes. It was agreed that CRP members would be drawn from the workshop participants and no-one would be elected in absentia, except in the case of West Africa, where all the participants were HIV negative. Participants agreed that in cases where there were no positive women from a region, the participants would convey the message and identify suitable positive women. Discussions around the criteria revolved around rural representation and access to e-mail as well as ensuring adequate representation of all countries. However, it was felt that communication with people in rural areas had been taking place using existing technologies and they also had access to the facilities of national networks and grassroots organisations. Participants were assured that although representatives would be drawn up from one country per region, there were means of verifying the authenticity and credibility of applicants from various countries and this had worked well for other CRPs. Suggestions for individual representatives from each country were dismissed as they would not be feasible given the resultant size of the CRP and the cost implications. The women agreed that in addition to the criteria drawn up by the PC, there should be an addition that representatives to the CRP should be HIV positive women that are open about their status. Participants broke into regional groups to select CRP representatives and their alternates. Representation would be as follows: East Africa Elizabeth Alternate -Betty Muhangi 34 Southern Africa Nomfundo Xhotsheni Alternate- Fikile West Africa The West African participants suggested Bose Olotu as the representative and Gifty Donkon as the alternate. This would be confirmed later. Young Women Maureen Owino Alternate - Cindy Central Africa Chantal Nyiramanyana ICW Promise Mthembu Planning committee Jackie Bogere Proposal writing exercise Using the work plan developed by the Southern African group, participants developed a budget to help them to develop their project proposals. David gave examples of what participants would need to think about including in their budget. For example, 40 workshops in the Southern African region by November 2006, with at least five workshops per country. Item Conference room Stationery Transportation fees Refreshments Facilitators Planning Committee Per diem Hotel Organisers‟ allowances Mobilisers Communication Medical kit Photocopy Cost 35 3.4 Closing remarks On behalf of the participants – Maureen Owino Maureen started by noting that it was a pleasure to give a vote of thanks on behalf of the participants. She thanked ICW and the Tides Foundation for giving participants an opportunity to meet, learn and network. She noted that if she were to travel to any part of Africa, she would have somewhere to sleep. “I have made 60 friends from as many countries that are represented here”. She thanked the organisers, Tides Foundation and ICW and the young women for having chosen her to represent them and promised to represent them fully. She thanked the older women for guiding them and showing them the way and giving them a reason to live, “you have been like mothers to us”. On behalf of ICW – Gcebile Ndlovu Gcebile thanked the Planning Committee (PC) for the commitment they showed, for bringing their heads together make the workshop a reality. She thanked all the women because they were the reason for ICW‟s existence, “ICW cannot exist without positive women”. She thanked participants for putting aside all their other responsibilities to attend the workshop, which had helped strengthening the relationships and determined what women would do. “We must remember as we go back home that whatever we have gained here is not for us but for our sisters as we prepare ourselves for treatment. We believe whatever you have heard here will be shared with others in your home countries”. She sincerely thanked and wished all the participants a safe journey back home and requested for continuity and commitment towards the project. Tides Foundation – David Barr David thanked ICW secretariat in London, PC members and Lillian for coordinating the workshop. He further thanked all the participants for sharing their stories, thoughts and incredible expertise, “it was an honour for me to sit here and listen to you”. He especially thanked Margaret for travelling all the way from Sudan under difficult circumstances. He said the reason the Collaborative Fund exists is because PLHAs made it happen and not Tides. He said he got involved in the project because it is implementation of GIPA at the deepest level. It is a powerful tool and great responsibility. This was the th 9 such meeting that had been held this year. Eastern Africa regional co-ordinator – Lillian Mworeko In her closing remarks the Coordinator of the CF noted that this was the third day participants were meeting as women to share the challenges they were experiencing in their respective communities. She noted that what each participant had learnt during the workshop would help them improve their work. On behalf of ICW, Lillian conveyed the organisation‟s gratitude to everybody who had helped make the workshop a success. She said that for participants choosing to be in Kampala for the workshop when there were other places they could have been showed the commitment they had towards improving the lives of women in their communities. She emphasised and called upon participants to ensure that what had been learnt would be shared widely. “I would like to request that you pass this information to the organisations and groups you work with. Tell them this is the beginning of a very long programme that we anticipate will give us results and we need their continued support throughout the project”. She expressed gratitude to the PC. “This would not have happened the way it did without strong women behind it. They have been doing lots of voluntary work. Thank you and we believe you are going to continue with us in this struggle”. She also thanked Tides Foundation and ITPC for recognising the role that women play in mitigating the impact of HIV and AIDS and pledged to work hard to ensure a successful programme. She thanked the donors/funders for making the implementation possible. She said that the CRP that has been put in place was going to start from where PC and the participants had stopped in taking the project further. She said the first meeting of the CRP would take palce in January 2006 to discuss terms of reference, policies, priorities in the grant-making process based on this workshop‟s discussions and a structure for proposals. By February the call for proposals would go out and by the end of March the selection of recipient organisations would have been done. She encouraged all participants to keep visiting the Collaborative Fund and ICW websites for any updates. 36 Guest of honour – UNAIDS Country co-ordinator in Uganda “The work of ICW and Tides Foundation is one of the most important agendas we have in Africa today. It is one of our most pressing agendas. Uganda itself has made great strides in treatment access. Five years ago the question in Europe was if treatment should be rolled out at all in Africa. However, five years from that time, African countries and women have pushed that agenda and achieved great results. At that time the debate was on whether African countries had the capacity to roll out treatment and the focus was on health systems. Now we have a number of successes in Africa that prove that it can be done, however, there are challenges to ensure greater access and ensuring adherence and not just enrolment”. She said that ICW was at the centre of treatment literacy and advocacy. She thanked ICW and Tides Foundation for the great work they were doing in placing treatment advocacy and literacy on the agenda. She thanked Lillian personally for her work and her demonstration of what could be done with the right people, approach and networks because through her work the Global Fund suspension of funding to Uganda was lifted last week. 37 APPENDIX - list of participants Name 1 2 3 4 Maria Motse Grace Sedio Cincy Bigamoyo Sello Sr. Ehlinesh Abebe Hailu Mercy AcquahHayford Kamau James Maureen Achieng Owino Patricia Asero Ochieng Mary Muthoni Ndungu Salome Agallo Elizabeth Osewe Veronica Omunga Akinyi Country Botswan a Botswan a Botswan a Ethiopia Organisation Bomme Isago ICW Botswana Bomme Isago Association Family Guidance Association of Ethiopia EHAIA EATAM KENEPOTE DACASA Movement of Men Against AIDS Msingi wa Tumaini Jipya Family Planning Association of Kenya Network of people living with HIV/AIDS (NAP+) ICW Kenya Grace Times Ministry Community Church Grace Times Missio Women Fighting AIDS in Kenya 254-020790282/6 ext.130 Telephone (office) 267 3616816 267 3616816 2673616816 251-0221111303 23321 228315/783923 254-532033549 Telephone (celephone 267 71383132 267 71478863 267 72974802 251-0911371710 233 659407 244 Email marymotse@yahoo.co. uk Botswana@icw.org cindykelemi@yahoo.co. uk egzieta@yahoo.com 5 6 7 8 9 Ghana Kenya Kenya Kenya Kenya maggrey@skettlepictures.com owinoachieng@yahoo. com dacasa@yahoo.com nonindungu@yahoo.co m sallykwenda@yahoo.co m elizakis@yahoo.com 254-722430163 254-733590232 254-722676293 10 11 Kenya Kenya 254 20 604299 254-733791346 254 733887489 12 A. Kenya 254 2734677 254 2731132 020 254 775504 254 748995 254 978794 254 722 152 254 752205 254 441932 722 vomunga@yahoo.com 13 14 15 16 17 18 19 20 Ericah Nabukwangwa N. Susan Wamaitha Gitau Grace Wachuka Mumira Marry Anne Mungai Pauline Odaa Abigail Bachopi Gatsi Jennifer Eronini Ogechi Chimezie Mukandoli Chantal Nyiramanyana Chantal Kayitaba Christine Chanbi Bray Promise Mthembu Sindisiwe Mbandlwa Nomfundo Benedicta Xotyeni Kenya Kenya Kenya Kenya Kenya Namibia Namibia Nigeria 20 722 722 700 722 722 kenya@icw.org suzzanwa@yahoo.com 254 2730952 020 Mungai_maryanne@ya hoo.com wofak@iconnect.com Journalists Against AIDS 234 1 7731457/81285 65 234 8037922489 eroninio@yahoo.com 21 22 23 24 25 26 27 Rwanda Rwanda Rwanda South Africa South Africa South Africa South Africa AVVAIS Association Abizeyimana Positive Muslims ICW Gender AIDS Forum S.A Partners – MASIHLANGAN 25008870526 2721 4487643 2731 7083175 2731 307 1253 041 977 6779 25008556911 27824743800 27 82 6282746 27 84 4201942 072 7620 303 Avvais_apder@yahoo.f r kaysoleil2000@yahoo.f r chanbi@positivemuslim s.org.za pmthembu@icw.org Sindim1982@hotmail.c om Nomfux200@webmail.c o.za 38 28 Margaret Muraa South Sudan 29 30 Phindile Nhleko Fikile Mashaba Andile Selly Swazilan d Swazilan d Swazilan d Swazilan d Tanzania Tanzania Tanzania Tanzania Tanzania Tanzania ENI New Sudan Treatment Access Movement ICW Swaziland AMICALL Swaziland Swaziland Parish Nursing ICW Swaziland ICW Tanzania HIV Positive Women in Action TAWOLIHA TACAIDS/WAMA TA Youthnet Tanzania Hope Mission of Development for Disabled Kumi district PHA Forum The Mildmay Centre –Uganda AIDS Information Centre Uganda positives Young Atsu_andre@hotmai.co m 268 4041915 09268 3434408/34356 06 09268 3646199 2686215145 09268 6113753 swaziland@icw.org fikilemashaba@yahoo. com zibuse@africaonline.co .sz gcebile@icw.org lydiarwechungura@yah oo.com nakavero@yahoo.com acordtz@africaonline.c o.tz Bkente59@yahoo.com coloursinger@hotmail.c om Atupakisye2007@yaho o.com olupotegoing@yahoo.c om alice.bakunda@mildma y.or.ug mahoro@aicug.org; f-mahoro@yahoo.com janekaweesa@yahoo.c om Pngalo2000@yahoo.co m reachout@infocom.co.u g joycemugarura@yahoo .com 31 32 33 34 35 36 37 38 Dlamini Duduzile Jabulile Gcebile Ndlovu Lydia Yulia Rwechungura Veronica Nakatude Rebecca Mboneke Georgia Baguma Zawadi Bahenge Specioza Mwankina Kente Salum 09268 6032372 255 22 744 516 494 255 744450572 255 2500965 28 255 748 643907 255 22 744 011128 255 744 935 451 255 744480265 39 40 41 Apolot O. Merab Bakunda Alice Florence Mahoro Uganda Uganda Uganda 256-4120086215/7 256-41-231528 256-77-591251 256-77-461862 42 43 44 Jane Florence Kaweesa Ndibalekera Nanyanzi Prossy Luzige Olwonch Betty Uganda 256-71850715 Uganda Uganda 45 Joyce Mugarura Uganda 46 47 48 Cissy SSuuna Gwokyala Rehema Betty Muhangi Uganda Uganda Uganda Uganda Young Positives Reach Out HIV/AIDS Initiative Mbuya Coalition for Health Promotion & Social Development Health Rights Action Group Mama Club Together Against AIDS Positive Association Integrated Community Based Initiative Post Test Club Uganda Young Positives 256-75648463 25641222630/2233 34 256-41 270970 256-77 414445 256- 41 531478 256-41 532580/1 256-77 442755 256-71 688925 256-71 979438 ssuunacissy@yahoo.co m mail@tasouganda.org muhangibetty@yahoo.c om 49 Mushabe Christina Baryaruha Uganda 256-78 395061 50 Jackie Bogere Uganda jesperjemoly@yahoo.co m 39 51 52 Lillian Mworeko Sipiwe Soko Uganda Zambia 53 Stella Rose Alungat Uganda 54 Tendayi Westerhof Zimbabw e Zimbabw e Zimbabw e UK USA USA USA 55 56 57 58 59 60 Linah Chirimhanzi Matilda Moyo Emma Bell David Barr Michelle Bell Hull ICW Uganda Ministry of Tourism & Environment Katakwi Egangakinos PLHAs Public Personalities Against AIDS Vital Hope Support Group 2601223931 26095910112 lmworeko@yahoo.com Sipiwe79@hotmail.com keplwa@yahoo.com 256-78 969617/492937 263 4 303081 263 4 11 608 983 26391 402114 ppaat@mweb.co.zw 263 4 332032 linachiri@yahoo.co.uk matildamoyo@yah oo.com ICW Tides Foundation Tides Foundation ICW emma@icw.org d.barr@earthlink.net mcoffey@tides.org; beri@icw.org 40