International Community of Women Living with HIV/AIDS (ICW)
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NAMIBIA Young Women’s Dialogue (YWD)
Windhoek, JANUARY 21-25 2008
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 Content
INTRODUCTION...... 3 PARTICIPANTS’ QUESTIONS ABOUT HIV...... 5 LIFE STORIES...... 5 SEXUAL AND REPRODUCTIVE HEALTH AND RIGHTS...... 5 INTRODUCTION TO ADVOCACY...... 7 MICROBICIDES...... 9 LOOKING AT THE ISSUES OF YOUNG WOMEN...... 10 PROBLEM ANALYSIS...... 12 FOCUS ON GOALS – WHAT DO WE WANT TO...... 13 SOLIDARITY – GETTING SUPPORT...... 16 USING THE MEDIA...... 17 INTRODUCING MONITORING AND DEVELOPING QUESTIONS FOR MPs...... 19 MEETING POLICYMAKERS...... 20 DEBRIEF...... 24 WAY FORWARD...... 25 ICW NAMIBIA PROGRAMME AND PLANS...... 26 EVALUATION...... 28 Appendix one – questions from young women about HIV...... 29 Appendix two – Press release for YWD Namibia...... 32 INTRODUCTION
This report reflects the discussions held over the 5 day workshop held in Namibia, 21st – 25th January 2008. Some of the discussions recorded are opinions and experiences of the women participants and do not necessarily reflect the opinions of ICW.
Jennifer Gatsi Mallet, the ICW Project Coordinator in Namibia, welcomed participants to the Workshop. She said that the YWD is a new project in Namibia. “We all need to participate – this is your platform. I have been living with HIV for 18 years. I am here to support a new generation to live positively.”
Introductions were made by the participants: 30 HIV positive young women – see appendix for a list YWD officer – CJ. Martha Shindi Vicci Tallis – facilitator – consultant. Involved in HIV for 22 years – counselling, training, training counsellors, activism and research. Involved in ICW processes (YWD, Voices and choices) for the last 7 years. Gcebile Ndlovu – Southern Africa Regional Coordinator Promise Mthembu – Global Advocacy Officer: SRR Jennifer Gatsi Mallet – Project Coordinator, Namibia Emma Bell – communications and research officer
Gcebile Ndlovu, the Southern Africa Regional Coordinator, introduced ICW and YWD “In 2004 the Southern Africa regional office was set up. ICW was set up in 1992 at the International AIDS Conference in Amsterdam because positive women’s rights were not being addressed. We have the International Support Office in London but in the regions we have different forms of representation – in Southern Africa a regional office and a member on the International Steering Committee – Lynde Francis. Membership is open to all HIV positive women and is free.
We do advocacy in several main areas: Meaningful and respectful involvement of positive women at policy level where decisions are made that impact our lives – we want to be at the table Gender inequality – there are imbalances around gender issues. HIV is very high among young women. ACTS for HIV positive women - most governments say that they offer free treatment, that all can access ARVs but still women can not access it. Its not just about giving out drugs we need the whole package. We need our issues to be addressed. Is it true that every woman can access drugs and how is their treatment in the centres? We also want to address issues around SRHR - this is critical to ICW.
Why YWD? At a recent International conference a small group of women prepared a presentation on young women living with HIV between the ages of 18-30. Not a single young woman was at the event. The presenters took this to ICW as a challenge that there is no space for young women. We have space for older women but their issues are not the same. ICW felt we must provide space for young women. The first YWD was held in April 2004 – the participants were from Southern and East Africa. We then had further workshops in Swaziland and South Africa. This space is for you – we keep what we say here in this room. Only be engaging freely will we learn. We have Vicci she has been with us in all the other YWD workshops.
Participants were asked to share their expectations of the workshop. Participant expectations of the workshop included: Learn more information about HIV and get more information to share with my community and teach others I want to know my rights as a positive woman I want to help other women with HIV Learn how to lobby and advocate for the rights of young HIV positive women Help young women living with HIV Get different ideas from others living with HIV and how we can stay with our problems. I want to go back home knowing I belong to a strong group of women living with HIV – building solidarity and moving forward and identify issues. Get my voice trained and be a powerful young woman I want to go back to the community and say there is hope for HIV positive women Develop plans for empowering young women and get policymakers to understand and take account of issues for young HIV positive women.
The aim and objectives of the workshop were shared with the participants: Aim: To build a core of young women living with HIV and AIDS activists to forward the issues and concerns of young women living with HIV and AIDS in Namibia.
Objectives To explore and share individual experiences of being a young woman in Namibia To identify issues and concerns facing young women living with HIV and AIDS in Namibia To build advocacy skills in young women: planning a campaign, building support and monitoring progress. To introduce the Positive Women monitoring tool as a useful resource for advocacy. PARTICIPANTS’ QUESTIONS ABOUT HIV Given the lack of information on HIV in Namibia, and the fact that increased access to information was a major expectation of many participants, participants were asked to write down their ‘burning’ questions about HIV and AIDS on pieces of paper and as a group we attempted to answer them. Some of the discussions are represented in appendix one. LIFE STORIES
Participants were given one hour to illustrate their life journey on their flip chart – including important events and people. The participants broke into small groups and shared their life stories. o All these memories were flashing back the suffering the pain, the tears the laughter, but the page is so tiny so you don’t put everything in. Sometimes you felt like crying because of all those sad moment. But when you hear other stories we all have that suffering and pain. We had a good beginning but then we had problems even before our HIV status and tears started falling. Sharing stories gives you that sense of she also has the same problem. If it keeps inside, you think you are the only one with a dark cloud over you. o We need to ensure that we address the real issues that we all face. You have seen the similarities in what you have faced and then when we do our advocacy we ensure that we address the real issues.
SEXUAL AND REPRODUCTIVE HEALTH AND RIGHTS
In four groups the women developed their own charter on SRHR based on our own lives. .
Sexual rights We as young women living with HIV have the right to ... choose the one I want to fall in love with say no to sex – if your husband says lets go I want to have sex with you now – you have the right to say no if you don’t want it have sex with whom I want, where and when what kind of sex I enjoy and how I want it – e.g. oral sex etc safer, satisfying, pleasurable sex be with one or multiple partners have fun and health sexual health -if you have an STI you have the right to be treated at a clinic or hospital choose your sexuality– whether heterosexual or homosexual report sexual harassment done to me.
Additions from the whole group: I have the right to a sex change – when someone is born as one sex and wants to be another. They have hormones and operation. Some people do not feel right in themselves as the sex they were born as. Treatment in services that is non-judgemental non-discriminatory and accepting The right to talk about sex openly We have the right to sex education that is open, explicit and about all forms of sexuality. Sometimes we find out in a way that is not so informed e.g. through friends.
Reproductive rights We as young women living with HIV have the right to ... have a baby or not have contraception be treated kindly get more information on how to breastfeed after pregnancy family planning (condom use) reproductive education medication treatment (PMTCT and pap smears) dignity, respected and confidentiality adoption abortion have a partner get married give birth naturally or by caesarean care and support during and after birth, including financial support
Discussion Sexual rights How many women do we feel access their sexual rights? About 5% - we don’t know if we have all those rights. How many men are accessing heir sexual rights? 95%. We need to think about our own relationships .Its difficult to change them but not impossible and we need to tell other women about their rights. Our culture says that you must obey what a man says. Culture, religion, socialisation are to keep women in their place. Men’s sexual needs are important and women’s aren’t. It’s not fair or right and when we get to this stage of recognition we can do something about that. Culture can be challenged not easy but it is possible.
Reproductive rights - When I was pregnant with my second baby boy I told the doctor that I had a problem with high blood pressure. Because during my first daughter I didn’t have the same doctor and I was taken for caesarean because of my blood pressure. I told the second doctor I am having that problem and he told me that no you will deliver yourself. - In Namibia if you have HBP you must have a caesarean.
Abortion: - If you are pregnant and want an abortion must you take the boyfriend with you? - I have a neighbour, a young girl. She was pregnant and she discussed that she does not need a child and the man refused to let the young girl do the abortion. So she did it herself – she used herbs and nothing happened. And now it time for delivery. It was baby boy. She was busy killing the baby and the doctor found it was dead. She was taken by the police and the police spoke to her very nice and she said that I did this because I have nothing to give this baby. I am struggling with this baby. She was arrested and was in prison and the boy was angry. - Some of us our in relationship where we can make joint decisions but it is a woman’s right to decide whether to include the partner. Because we know that we will ultimately take responsibility for the child. - Sometimes it is the other way around – man wants to terminate and the woman does not. We have to look at the circumstances.
Right not to have children – why important? - We will look at our financial status and if your husband does nothing or is abusive and you are struggling to get bread on the table why would you want to bring children into that. - There is an expectation that women should have children – you get a certain status when you do – lots of pressure for women to have children. People think what is wrong with her if she does not want children. Give women the right to assess her own feelings and circumstances. She is still a woman if she does not want children.
Adoption – where can I go? - In Namibia you go to children’s homes or the Ministry of Health but you must be financially stable and be able to provide a good home. They don’t want to give you a child that you will abuse. They check your criminal record - Can only heterosexual married couples adapt? Can HIV positive women adopted? - We don’t know
INTRODUCTION TO ADVOCACY
What is advocacy, why we need it and how we do it? Problem/issues/concern which we identify then there is a whole process or a fight where we want to change the situation. If successful we will have change. Advocacy is a process where we are fighting for change.
Who does it? Individual or communities/groups Often we advocate on behalf of others. We as a group may identify issues that are facing young HIV positive women – we are advocates fighting on behalf of all young HIV positive women in Namibia.
Ten steps 1. Identify the issue – what exactly do we want to change? For example, a lack of access to TOP (termination of pregnancy) if that is problem then what we want to change is putting a policy in place or a service. 2. What is the change we want to happen? 3. We need to find out who has the power to make the change – we need to identify specific decision-makers – e.g. if Ministry of Health then no good going to deputy director of education. 4. We also need to identify who influences the decision makers. We need to research and know the facts. They don’t necessarily work on their own. E.g. the Ministery of Health always goes to a specific committee before they make decisions – so that committee is quite powerful in that they can influence the decision-maker. We need to go to them and lobby – this is our position and why. 5. Shape powerful messages – if we go to portfolio committee ‘we’d like to have an audience with you’ and you get given 5 minutes and in our 5 minutes we have to argue our case based on evidence and facts We need to be clear about what we want to say – we don’t have three hours. So advocacy involves a lot of planning. We need to have done our research and prepared the person who will speak on our behalf they need to be good, passionate and articulate. What and how we will communicate - SEE messages – make a Statement – lack of access to TOP for women in Namibia and what we are asking for a policy change, then we talk about Examples – what examples will make the Policymakers change their minds – e.g. % of women that are going for backstreet abortions that are dangerous. Need for it to be done safely. We need to give Evidence – where other countries have allowed TOP where women’s lives have improved. And they may ask us questions so need the information. 6. Build support/solidarity – we can speak to other women’s orgs that support women’s or HIV organisations. Build alliances and relationships and partnerships with these people. We are a group of 30 women in Namibia and we present how many women in Namibia and we have the support of ICW Namibia. If we are just 30 women what will they say? Why would they change policy for 30 women? 7. We need to develop a plan – the steps we need to take to get where we are. How many have done operational plans before? Do you know about objectives and activities etc. we need to be detailed about our plans. Often women do not have power in an organisation, they are not doing the planning. We as women must get our selves the skills and take our place to make decisions and design a plan. 8. How do we communicate our messages? For example, to build support among other HIV positive women. We would not give the same information to policymakers. We need to tailor out messages. T-shirts are away to communicate our message 9. Organise – activist campaigns are organised. Who involved and who doing what when and how. E.g. the liberation struggle in Namibia was organised 10. Build in ways in which we can care for ourselves – long and stressful and can be disappointing and make us angry. We may be exhausted and put a lot of work in and won’t see results straight away. As women we need to start think about ourselves we are as important as anyone else in the family. If we are sick how will we look after ourselves? We always put everyone else first. E.g. if a child is sick we are straight to the clinic but when we are we do not.
Case study on microbicides
In groups the participants looked at an advocacy case study from the Gender AIDS Forum that sort to have microbicides included in the RSA National AIDS Plan.
Question for the groups: What were the good things that happened in this case study? Why did the campaign work? They had everything in place – they knew their policies they knew what they wanted. They developed a strong message They also had their goal/outcomes – they knew what they wanted their outcome to be. So when they got the clauses in the National AIDS Plan that’s what they asked for and that’s what they got. Research on different levels – policy research and with different people in communities and with the scientists. Support – they formed a relationship with other countries e.g. Brazil and India where trials were taking place. With the litigation project in RSA for example, in Chile and Russia they are doing similar research and it is good to link with those projects. Support from other NGOs and the community. They are advocating for the government to take microbicides seriously. If women don’t want it then it is pretty pointless so we need to say that women want it. Does everyone know what a microbicide is? No – [decision made to give a talk on microbicides the next day]
MICROBICIDES
What is it? It’s a prevention method – a substance e.g. gel, cream or a tablet that a woman could insert into her vagina and that substance would prevent the woman from being infected or re-infected or STIs. Some of them can also prevent pregnancy and some would prevent HIV and allow pregnancy. Important to note that microbicides do not exist at the moment – it is a concept and idea and there is research being carried out to see if it dose in fact work. We have 65 different kinds of microbicides and some testing has gone far and some at the beginning stage.
They work in different ways. Microbicides have different mechanisms of action. When the microbicide is inserted into the vagina it may Kill the virus Prevent the virus crossing into the blood Interfere with the virus - in the same way as ARVs. This is a big issue and is potentially a good thing. Women can use them and don’t have to negotiate with the partner – women can take control of prevention. A man knows about a female condom. But women with HIV are not a priority on the research agenda. We are not sure they will work for positive women and what is the impact if the woman is on treatment. Part of our advocacy agenda is that it is good for HIV positive women. A well know scientist and researcher said at a Microbicide meeting in London said we do not know what goes on in positive women’s vaginas. We are not sure if it will also protect positive women. We could use it to protect ourselves if we are negative. We need to know because HIV positive women are not on the agenda and secondly many trials are happening in Southern Africa.
Different stages of research Laboratory – animal trials Human trials - different phases 1, 2, 3 clinical trials - Phase 1. is it safe? Recruit 10-50 women at low risk of HIV and get women to insert every day for 6 months and will check affects in vaginas. In 50 women no bad side-affects . Phase 2. Maybe 200 women - expanded safety trials. Phase 3. Is it effective? Maybe have 5 sites in different parts of the world. You need women that are at some risk of HIV. Phase one - usually done in US or Europe but for phase 2 or 3 they come to Africa and there are some risk in the trials as they don’t know if it works. There are 70 different products that are currently in trials. Although most of the potential products and in Phase 1 or 2 and 6 or 7 potential microbicides that have got to phase 3 trials. Clinical research is a long process. Most of the products in phase 3 trials are being researched and tested in South Africa. Women need to know what they are getting into. Researchers have an agenda so as community activists we need to know the issues. They are testing lots of women before they go on the trial. They are looking for negative women. They tested 1000 women for one trial and at least half were positive so it’s an issue that women find out in that way.
Microbicides in Namibia In Namibia they will conduct trials on women. How do we make sure that we advocate and that our women understand what they are getting into? What phase? Need to get in touch with USAID. They would have a local partner/medical research counsel – good to start there. Each trial supposed to have a community advisory board. We need people on the board who are outspoken and go to community and start talking to women. Find out where will they do the recruitment so we can ensure that women know what it is about. The Gender AIDS Forum has materials that may be useful. For example, they have a manual about introducing microbicides to communities so we have informed communities – so they know it’s not about a bus fare and a meal. They will have to talk about there sex life and also to have tests and exams and also what happens if they seroconvert. - How can we enforce ourselves to be on advisory board – we won’t have outspoken people. - We need independent people on advisory boards that are independent from researchers. At the moment they are nominated by researchers or a community person that will benefit. They get a salary from them. - There is so much money in research for microbicides and none for community participation. There should be a line item on it and it should go to an NGO to administer. - We must build capacity so people can participate effectively – they train on ethics but not on HR.
LOOKING AT THE ISSUES OF YOUNG WOMEN
In same groups as participants where in for their personal journeys. Each group identified three key issues that they think are facing young women living with HIV in Namibia.
There is a lack of…… 1. treatment literacy 2. support and communication 3. information on SRR and HR 4. information on HIV and AIDS in Rural areas 5. information 6. proper treatment for HIV positive young women 7. happy marriage 8. parents responsibility 9. employment 10. getting jobs because of HIV status 11. employment among HIV positive women
Other suggestions from whole group: 12. OVC – but ICW focuses on women. Let’s try and focus on women specific issues. 13. Lack of skills building for young women living with HIV. 14. A lack of knowledge among HV positive young women about their rights 15. No representation of young women at any leadership platform 16. A lack of appropriate non-judgemental SRH services for HIV positive young women
ICW can not focus on employment and happy marriages. Lack of skills building is a big issue and we will take it seriously but it is not an advocacy issue. It will be addressed in a different way.
The issues were consolidated into 6 main issues and participants asked to choose three (highlighted below): There is a lack of access to (women appropriate) information and treatment for young women There is a lack of access to information and services on young HIV positive women’s SRHR There is a lack of information and political conscientization especially for and on young women living with HIV on Health and Rights There is a lack of support, solidarity and mobilisation of young women living with HIV. There is a lack of representation, meaningful involvement and strategic participation of young women living with HIV in all decision-making structures. We don’t want tokenism. We want women to have the power to influence change. There is a lack of a young woman’s agenda in Namibia. You look at national AIDS control plan is there anything about young women living with HIV? No – we must set and push agenda.
Add on to report about information availability - Most of the young positive participants did not even know that Namibia had adopted the HIV AIDS Country Policy – this shows the gap whereby you expect CSOs who claim to be working with grassroots on HIV should have provided this information widely. A representative of a CSO that came to the workshop on the final day accused the young women of not reading the policies. But should we not all ask ourselves who should make sure that this information goes to the populace? It’s the CSO’s responsibility especially if they know that in Namibia there is a culture of not reading. If you want to pass messages one should do it through the radio or community or group meetings etc. PROBLEM ANALYSIS The first thing we need to do is really understand the issue. Problem analysis in three groups. Why is this lack of a problem for young women and what are those problems? Where does this problem happen and who is responsibility and who benefits? What conditions, practices and policies need to change in order to address the problem?
Group one - Issue: There is a lack of support, solidarity and mobilisation of young women living with HIV.
Why are young women not mobilised? There is no-one to mobilise them and it is not seen as a priority – some-one has to take control of that. We need specific concrete changes. Care, support, trust and honesty – what are they and how to you measure them and how do you ensure that you get them? We can say by 2010 we want the following– a certain amount of government funding set aside to address the issues of young women. And we can measure it.
Group two: There is a lack of representation, meaningful involvement and strategic participation of young women living with HIV in all decision-making structures.
The majority of people with HIV are young women and their voices are never heard. We want strategies and programmes that address our needs and if we are not sitting at the table they don’t know what our needs are. They don’t know or feel our issues (men, negative older etc). Change – this needs to be done at different levels. How can we ensure that HIV positive young women are involved?
The Namibian National AIDS control plan comes to end. At the end of 2009 a process will start soon and that is a target for us – we need to be involved so we can influence it. There is some token community involvement in policy process. We want better involvement and involvement of young women.
We all belong to organisations – Do they have gender policies? We need to influence NGOs that we need a change in policy – we don’t just want ten men and one woman on committees but an equal number and to include HIV positive young women. We must go to policy- makers and leaders of NGOs and demand our seat at the table.
Group three: There is a lack of information and political consciousness especially for and on young women living with HIV on Health and Rights.
Who will create this platform? Maybe there is more than one change we want. E.g. we want to demand information for young women living with HIV. We need to go to the department of health - you produce all this info and none for HIV positive young women. NGOs produce media but for HIV positive young women - not really. We can also create that information ourselves. We don’t want the Ministry of Health running workshops with young women we want the money so that we can do it. FOCUS ON GOALS – WHAT DO WE WANT TO CHANGE
In three groups participant defined their goals:
Group one - There is a lack of information and political understanding especially for and on young women living with HIV on Health and Rights. Involvement in decision-making at different levels – TAC, regional AIDS coordinating committee and constituency (RACOC and CACOC), national level and district level, and representative for young women living with HIV in the regions Special budget for young women living with HIV to develop IEC material and create awareness among and for young women living with HIV in their own communities Create skills capacity trainings for young women living with HIV.
Group 2 - There is a lack of representation, meaningful involvement and strategic participation of young women living with HIV in all decision-making structures. We want for a young woman living with HIV to be involved in strategy of decision- making We want our voices to be heard We want respect for a human dignity and be provided with the care and support for a better living standard as well for the freedom of speech and movements. In order for us to reach our goal we have to work with NGOs, governments and traditional authorities through meetings.
Group 3 - Issue: There is a lack of support, solidarity and mobilisation of young women living with HIV. Establish more support groups in all regions empower women living with HIV to know our rights and act them out decrease the rate of infection We need assistance on TOT (Trainers of trainers) Structure of government decision-making on HIV in Namibia
National AIDS Committee (NAC) Leadership: Policy, Resource mobilisation
NAMACOC (The National Ministry of Health & Multi-sectoral AIDS Social Services Coordinating Committee) Directorate Special Multi-sectoral leadership Programmes & co-ordination
NAEC (National AIDS Executive Committee)
Co-ordinates implementation
Sector Steeting Technical Advisor Committees Commitiees Mainstreams, co-ordinates, Technical Input monitors HIV/AIDS at local level RACOCs (Regional AIDS Co- ordinating Committee)
Co-ordinates multi-sectoral response at regional and local levels
RAC/SHPA/+Technical Regional Working Groups Team Related Steering Technical Support Committee
Sub-regional AIDS Committee (DACOC OR CACOC)
Co-ordinates local response
GRN (Government Republic of Namibia), Local Authorities, NGOs, FBOs, CBOs, private sector, parastatals
Discussion: The structure needs to change because they put us at the bottom. We need to find out who is represented in each committee. Jeni has a meeting and will ask who the civil society representatives are on each committee. First step – we need to know who is out there and what they are doing. We can try and work together with them and find out what they are really doing – we are in a position to help each other. SOLIDARITY – GETTING SUPPORT
General supporters of HIV positive women’s rights identified by the participants: Supporters Ministry of Health, Ministry of Gender RACOC/CACOC NGOs, Community and CSOs PLWHA Media ICW women Sister Namibia AIDS Law Unit
Opponents We are not sure PLWHA Ministry of finance
Discussion: The more specific the better. You said Sister Namibia are supporters – maybe we do not know their position and that is why we put some in the middle. Organisations that we need to meet with and check whether they would support us or not. We say all PLWH will be opponents of our supporters – needs to be factual and clear. Not all are opponents. Many of us have put the Ministry of Health as a supporter – but actually they should be providing what we are asking for. They are a target – if they already did support us we would have better clinics etc. It does not necessarily mean that we have to include the Ministry of Health – if you have an ally within that minister and she does not have a voice – then you need to work with that ally as an individual that supports your cause. Women’s action for development - look back on that they have done. Last year they fired a young girl that become pregnant – would they support us if they fired a girl that was employed by them and the same with Lironga Eparu. Men for change – what do they want? There cause is men against men against VAW and children – possible a supporter. They are pro women’s rights. Maybe there are some conservative organisations that won’t support us. We must test out each supporter and opponent. USING THE MEDIA
Why should young women living with HIV use the media? So information reaches a wider audience in and out country Reach more young people – especially with radio to mobilise To create awareness of your issue To break stigma and discrimination To gather information on our issue
How? What is the Medium? Press release Opinion pieces Press conference Text messages Interviews to journalists Panel discussion with partners\and panel discussion
Important points: Media only interested in issues that are current. Media has deadlines – for example if you want your issue in the Friday paper because more people read it – the deadline is Wednesday. It is important to establish a media contact: We need to identify a specific person in the media and a contact person in your group – a media spokesperson. Sometimes journalist might not really know the issues – you may have to educate that person. Example of using the media to ensure that progress – the Centre of Hope battled to get planning permission. They went to the media and got the support of a journalist who wrote an article – planning permission was given. Not all media will be supportive – they have political positions, economic positions. We need to be strategic. The media has power, journalist have power. They may misrepresent you. Tell the journalist that you want to read the article before it is published. They feature only want what they want – mainly personal stories Editors have the power and do change the articles Check the headlines! Can be misleading Make your personal stories political – for example, I did not have sex education in the school I attended – we have no access to condoms, I did not know about safer sex.
Press releases: What is a press release? Written document that is sent to our media contacts – contains our message, what we want, our message. What should it look like: short, clear, to the point, neat, double spaced. Introduction: bold, clear statement – current, should be in the news Contact details Put it on a letterhead Address it to a particular person Follow up with a phone call ISSUE - link to a current or recent or planned EVENT Headline – engaging Who What Where When Why
Example, The first national workshop for young women living with HIV in Namibia ….. Who do we send it to? press, journalists who cover the issue.
Press Conference Provide sufficient notice Choose a good time and an appropriate venue Keep your presentation short Distribute a copy of the keynote statement at the start of the conference Avoid having too many speakers Have a chairperson Welcome people Distribute a follow-up media release
We also discussed the importance of choosing allies that could also sit on the press conference panel. However, it was pointed out that press conferences are difficult to organise and it can be hard to get the press to attend.
Role plays – in three different language groups the women roles played talking to the media about relationships, poverty and services. They discussed having children and disclosure among other issues.
Example press release - appendix two INTRODUCING MONITORING AND DEVELOPING QUESTIONS FOR MPs
What is monitoring and evaluation? Answer from participant; monitoring is to monitor to see how the project is running Evaluation is to determine whether the project is successful or not and why. Questions on: Monitoring - Have we done what we said we were going to do? Evaluation - What difference have we made? Why do we do monitoring and evaluation? To see where we went wrong, where we went right and where we can improve What is our role in monitoring and evaluation? Do you think we should be involved in M&E? So that we can find out whether our needs have been made, so that we can be heard
ICW Monitoring tool introduced ‘HIV positive women monitoring change’ – questions for HIV positive women, service providers, and policymakers to monitor government commitment to women’s rights. The young women were asked to use this as a guide when developing their own questions for the policymakers meeting on Friday.
In groups participants were asked to come up with three questions to ask the policymakers that would be coming to see them the following day: What do the government do to specifically help young women living with HIV? Why did the government stop the grant for people living with HIV? Why does the government not give incentives to assist unemployed people living with HIV? What do you do to ensure that young women living with HIV have access to employment? Is there any young positive women in parliament, if no, why? Why is the government more concerned about HIV status and not more concerned on job creation specially for young women living with HIV? What is the government policy around compulsory testing for employment, insurance, including life cover?
Issues around access to ARVS and treatment of HIV positive women by health staff were raised in the ensuing discussion around questions and the following questions were added: Is the government doing anything to ensure that young women living with HIV are treated well in health services? In 2006, a meeting between people living with HIV and the ministry of health and social services and the president, the issue of payment for treatment was raised. We were assured that no-one would be turned away. What is the government doing to monitor this situation? There are different costs for accessing ARVs in different regions, what is the government doing about this in ensuring that there is a standard charge? ARV’s involves having access to food, what is the government doing about food security for people living with HIV especially young women? MEETING POLICYMAKERS
Attended by: Honourable Elma Jane Dienda – MP Hon. Hansina Christian – MP Hon. Petrina Haingura - The Deputy Minister of Health Alina Amupolo – University of Namibia, heads the Zamanawe HIV unit and student peer educators Rosa Namises - Namibian Women’s Solidarity) Nuusita Ekakuj - RACOC, Regional Coordinating Officer on HIV and AIDS
Hon Dienda called on people to address HIV in their own lives, to get tested and speak out from experience. ‘If you can not make peace about your status how can you ask someone to make peace with their status whether negative or positive?’ She congratulated the young women for coming out [disclosing] because it is a difficult decision involving boyfriends, parents etc. Yet people need people like the young women to counter-balance the fear others feel. ‘God does not want to harm us he wants us to know and experience his peace and his love, speaking about your experiences will give people the courage to say no to sex or insist on condoms. Sometimes young people caught in mood and don’t use condoms. They need someone to who they can talk to without any fear – people like you. In many cultures young people are not encouraged to talk about their fears yet small babies can get HIV so it is not a crime. You can make a change; you can change a person’s life forever. You will always have my support in anything that you are doing.’
In response to the questions asked by the young women the Deputy Minister of Health Hon. Petrina Haingura, assured the participants that the GoN cared about its people and that the ministry off Agriculture and Health was preparing to address the very important issue of food security. She also said that people should not be turned away from the health centres if they can not afford the fee. ‘I can say that the policy of the government is clear that no Namibia can be turned way who seeks treatment you have your rights. We are human being with human error but the policy is clear there is no need to send someone away who is weak. If you send a patient away they are more weak.’ There are also rules governing the fees that should be paid at different levels and that patients should not be facing random pricing.
Hon Hansina Christian also spoke about the bad attitudes of some health care staff. She said that we need to understand that they are over-worked, tired and may have ill health too. But that in the training of health care workers they are taught not to insult anyone. Also she reiterated that the policy on HIV testing emphasised voluntary testing.
In response to the question about why the government had taken away the grant for HIV positive people, she said that the grant was not for people that were able to earn something. ‘There is no country in the developed countries that could afford people with HIV to be put on the grant – they help people in need not everyone. Otherwise the money is not enough. We can’t leave people to die that are in need.’
‘This Government are keen for youth because you are the leaders of tomorrow. We are getting old even if we put makeup on. We have the Ministry of Youth and Culture to look after your needs. In the Ministry of Health we also have HIV programmes. If you don’t know then come to my office and the girl working there will help you. Bring your needs to us so we can incorporate them in our plan.’
In response to the young women’s question to have an HIV positive young woman in parliament the Hon Dienda replied that it would be unfair to expect someone to test before going on the party list. ‘Women in parliament we can not say who is positive or not – it is your secret so we don’t know who in parliament is positive.’ She also mentioned that the President appoints 6 advisors and one of those could be an openly positive advocate [ICW would need to check this as it was unclear exactly what was meant].
A further question was asked about having to declare one’s status when applying for insurance. We were told that there would be an insurance motion next week in parliament, particularly looking at the policy around testing.
The women were also told to get more involved in the regional political meetings that would be taking place from the 10th [check month] and young women can bring their input.
Rosa Namises from Namibia Women Solidarity said that it was good for civil society to question government as there are good policies but they are not implemented. The government has responsibilities for example, to see that the country’s people are employed. She called on the young women to think about how they could organise themselves as young women in their own communities so that they could tell the government they have come half way. She recognised that it was not so easy to get support from banks and the government –‘you need security and sponsorship’ but that community work could be made viable and supported by the government.
She questioned where the Global Fund money meant for PLWHA was going to and suggested research to assess what government programmes were in operation. She also called on the young women to get over their fear of politics and go to parliament and get into party politics, join the local or regional councils. She also mentioned the six people that the government can choose to advice him. ICW could help the young women to become a strong lobby group around important issues to young women such as food security. ‘You need to prepare yourself so that when the plan comes up we can ensure that the food comes to us and not into a counsellor’s house and disappears. You need to organise yourself and go out there. Join the public hearing – that is where you will go and speak about these policies. Get the dates where are they going. Go to their meeting and quote them. Put your things in writing, if you don’t start you will miss out and when they are around the table it will be the same. Put together a document and present it and they will listen to it – say you want to present yourself, write petition and collect the young women’s names, go public if they don’t listen tell everyone that you went around and they didn’t listen.’
She also raised the important issue of public and private lives when in politics. The constitution protects people’s privacy but HIV positive people are expected to go public. But what about how much money and property the MPs have? ‘We need to understand what it means to be a private and public citizen. We have a right to be private and does that work with being a public figure? When you open up what is the package I get? Is it right that your private issues are put in the newspaper and made public?’
Question from participant - ‘As young women living with HIV we have no one representing us at any level. We want to be part of parliament and represent HIV positive young women. Most of us do not know if there are programmes for young women or even for the youth.’
Hon Dienda ‘I wanted to get into politics to take over. If you sit there and feel pity on yourself no-one will help you – if you help yourself. When you hear that there is election in politics in any area go there and be active in all those meetings. I started in SWAPO I attended meetings for women etc and they said this one is serious and they put me as a section leader. Don’t feel discouraged you are on the right direction. Start to be active in politics.’ And for those that preferred business over politics she had this advice – ‘The Bank of Windhoek they have small grants. There are people that can help with a business plan in different regions. Continue to search for information you have the right to make appointments with different ministries to get information. Ministers - They are your servants they are not your bosses.
When HIV policies are discussed in parliament all questions that I ask come from NGOs and ICW and I ask these questions in parliament. They [ICW and NGOs] gave us all this information, when there are platforms like this and you invite us. When I stand up in parliament all my questions are about HIV and young people. They say “Hon Dienda its only young people.” We must reach to you and get information from you. Some sitting here I ask your questions in parliament. I publicly had an HIV test – I don’t have a private life I am a public leader – I said I wanted to be tested publicly because you asked me to. I did not give my result because you said it’s about knowing your status.‘
Request from Esther, one of the young women – ‘We are not so strong in politics (Esther). We are not at that stage yet. Please when you have a meeting please take us step by step, let us know. We come from rural areas and I may not have access to TV, Radio etc but I want my voice to be heard.’
Hon Christian – ‘We are levelling the playing field – we are your servants we are here to serve- put if you do not give us your information then we don’t know what to do.’
Question from Melao (participant) - ‘In Namibia we try to do small things like businesses. But there are other people that are doing it – the Chinese are doing it all. They have the jobs. They are even making bread that we can make but it is $3 less. They know how to run a business but we can’t get the skills.’ She pointed out that it is the veterans that get the grants.
Rosa Namises - ‘You must advocate and lobby. The veterans are organised and the government can not ignore them. There is RACOC, there are many things, and you must become a force to be reckoned with. You say you want to talk for yourselves we are waiting. Can Promise tell us about how TAC got recognised? How can you raise your voice so this minister does not even sleep! How can you be united and how can that make an impact. Move out of that comfort zone and take the risk – don’t let people, MPs and big policies put you down. Our respect for MPs must be with reliance – I am equal! Who is interested in politics who wants to be a politician? [At least 10 women put their hands up] you can get trainings – there is training for women in politics. You start there. We are doing a sexuality campaign, we did a 50 50 campaign in politics and we are now taking it to the bedroom. We want to control the sex now!
Points from Promise: ‘Can the government of Namibia communicate the criteria for accessing the grant and the application procedure so those that want to apply can apply? It is in the HIV policy that HIV positive people can access the grant. ‘There are different prices for treatment at different levels. This is a barrier to them accessing treatment. Why is not treatment free as transport costs are already a barrier and $3 can present a further barrier to accessing treatment and someone can die? It does not cover cost of meds so why have such a barrier? There are gendered barriers in accessing treatment, e.g. a woman not knowing what treatment or vitamin to go on when she is pregnant. Adherence issues are different for women than men. Can we be linked to mechanism within the government? It is not easy for young women to access them so that space needs to be created. Are the Ministers willing to work with us to create spaces for us? I want commitment that ICW does a policy presentation to parliament and an assurance that ICW is there to present on issues of HIV positive women.’
Hon Hoffrain – ‘The office is very accessible for ICW. When you knock at our door we have an open door policy. If you want to see me come make an appointment. If you are 20 you have that right – that is why we say we are your servants. Just go through the right channels. So I don’t need to make a commitment because it is already there. I am committed to HIV. The political will is there – you bring your side there. We are there for you.’
‘We are working on the policy of $3 fee for health services. The policy is clear and not just people with HIV. When you go to clinic you pay but if you don’t have money you must not be sent away. If you are speak out! Tell us there is a problem here.’
‘With the grant, give me time I will put it in writing for you to give you the whole story.’
Final points raised: The young women said that they needed to get involved in the up-coming elections. On being questioned on why ICW did not involve men Promise and Jeni stated the importance of focusing on creating safe spaces for HIV positive women to develop their empowerment and activist skills and that was the goal of our ICW. Violations of young HIV positive women’s reproductive rights were brought to the attention of the MPs present. They were shocked to learn that young HIV positive women were being forcibly sterilised at certain Namibian health centres and promised to investigate any centre that was reportedly involved.
The session was concluded by the Deputy Minister for Health handing out YWD certificates to each of the young women. DEBRIEF Although ICW and our young members from Namibia appreciated the effort that the visitors made to meet them and address their issues they did raise some concerns as well as positive aspects of the meeting: I did not like the way that MP said you had to be in politics to sit in parliament – we don’t know politics so why say we have to sit in a party to be in parliament. I think that at first they were trying to be difficult not coming to point. Stubborn. But with their promises and their smiles at the end I think maybe. I have learnt never to trust politicians because at the end there is zero things to be done. But they want the list of all the participants and will reach out to different regions and call women here from that specific region to attend meetings. That was a very good outcome. They came here with a definite idea of the role of the women here. And women with HIV. They focused on disclosure and assumed everyone was public about their status. Talked that women here now open to advocate with negative women. They see our role in HIV prevention and that is not what we are here for. They were not talking as accountable public officials but were talking about their selves as women and threw it back to us - it is up to you. They said that they would involve ICW in future meetings and discussions around HIV – They wanted ICW to tell them what our issues are. They want us to educate them about our issues. They want us to give them evidence of sterilisation so they can move on it- and that the Youth ministry would include our issues and involve ICW. They are also going to put together a formal response about the grants. We need to sort ourselves together and to get them to respond to their commitments now. Now they have said it we can push for it. The policy on health service user fees is not clear. There is a policy on fees but not so detailed. They did say that people with no money don’t pay but there is a power issue and why pay $3 anyway? We talked about forcible sterilisation because it is an issue within SHR. They say you can come to us when we go to regions but the government is doing nothing for us. We are going to say in front of everyone what they are not doing for us – gather as many young women as possible. It feels like we are a burden to them and we are not quite capable of doing anything ourselves. We can get the cloth and make a dress but if we don’t have the resources how can we do anything. We have some education but the government must meet us half we – we can do that. We are doing things and all for free and they are not helping us. I am already doing HBC and I am not getting anything. I am making jam - IGA with our support group members. The deputy minister was there. I was there with my bottles and I asked her to buy even one and she said she had no money. The regional coordinator bought everything! If there are no supporters the business will not go well. Next time you need to say this in front of her. And there is so much bureaucracy when you try and access first national bank. IGA is not the solutions – you are intelligent women and you do not want to be making jam for the rest of your lives. CSOs also have a problem – they just want us to sit there but we are not benefiting. How are you supporting us as women with HIV? We appreciate the platform but we have been conscientised and we will be coming back to them. Now we are really going to fight for our rights. We are going to learn about how to get those rights. We need more intense research – they asked for evidence of forced sterilisation so there is a role for ICW. I was excited when there was somebody from the university – but the question she asked was disruptive – do we hold similar workshops for men living with HIV? Do we write to university? There are not many people that are passionate about the issues so we have to do it ourselves or we get nowhere. We need a position on prevention – it does not change your lives in anyway. They don’t advocate on your issues they don’t know what they are. They use us. As HIV positive women we have to take our own position around prevention – they are so keen to use us. You stand up saying I have HIV because I did not use condoms so please use condoms so you don’t end up like me. Rosa is for women’s solidarity – she said that you women do not read your policies. But is it not the duty of civil society organisations to share policies. As a rural woman I may not be able to read – they get all the money – well they should inform me there is this policy. WAY FORWARD What do we want to do after this workshop? When we had discussions in our sleeping compounds – I would like us to network with each other and see where we can improve. Not much of us are involved in decision-making – if you network and follow-up with each other you pick up how to do it. As a group is impossible because we live far from each other but we all travel and we have become one team – we are ICW all of us. ICW from Windhoek and other regions or from wherever. To improve our ideas – so when I move from Windhoek to other region the door will not be closed to me and let me in to learn from her and when she comes to Windhoek she learns from me. How do we strengthen ourselves? You must hit the iron while it was hot. What do you think as ICW members should be done? We have to do research into our regions. Compile all the data. We don’t know who how many people are living with HIV in our regions and we don’t know and we fail. Research will show we are serious. We’re the ones that know how the communities are – we have video cameras and can show what we are doing. There are different ways to collect that information and write it up and document it. That will take 6 months. But they were here today and think they have ticked this one off – so we need to do something in the next few days. We have access to the radio – we can go straight to radio and talk about workshop and who we met and what has been discussed with the MPs in the workshop. Issue letters to all of them. Letter to the Ministry of Health talking about the commitment that she made and we are keen to discuss them further. Outline some of our plans. Women here said they wanted information they could take back and that is how we start mobilising. There are two people from each region – you can go back and mobiles 20 or 30 young women and start that process. Think about their lives and things that are unjust for HIV positive young women and empower them to think they could do something about that. In 6 months we will then have 300 young women! We have a problem of sticking to our own commitments – are the women here passionate to work with other youth? They can not rely solely on Khomas. I don’t want to phone everyday with my own credit card and hear excuses. Some people it is their first workshop so it is hard to be active for the first time. The first time I was not able to walk and be active as I do today. I hope everyone is really touched about this issue. I hope they will speak out. We all come from regions and we know who has experience so if we want to make change we go to them to tell them about the YWD. Maybe you wait for your 5th workshop that will never come before you start working. I try to network but some corners I don’t reach because of transportation. I am willing to do that if I have assistance. I am the only one trying to do it. Jeni – ICW plans – we must put it to Gcebile – we will send out the suggestions to the Regional Co-ordinator – this is what they have put forward. If you have access to email or fax I can send or I can phone you what our RC is advising us to do. I need all your contact details. Letters to MPs and the YWD press statement – If it comes from ICW Namibia it will not be taken seriously. If we say we are an international organisation - so if comes from the region or from London they will take notice. They will then take steps. We can draft something immediately.
Summary of actions Press release about the YWD to be circulated to national newspapers; Letters to the politicians reminding them of specific promises made; Network, stay in touch and share information from the workshop with other young women in their communities; When resources available conduct research by and with HIV positive young women to have a better idea of what is happening in the regions in order to improve our advocacy. ICW NAMIBIA PROGRAMME AND PLANS
Khomas Women’s Health Committee During, the Parliamentarians for Women’s Health round table discussions in 2006, it was recommended by all stakeholders “women living with HIV, Members of Parliament and CSOs” that a committee of women be formed so as to monitor and report on health care services in the respective regions of Namibia. This is when a group of 13 positive women who had participated in the Parliamentarians for Women’s Health project formed the first committee called Khomas Women’s Health. At their third meeting, it was agreed together with the ICW Program Coordinator “Jennifer Gatsi Mallet” that a network of women and girls living with HIV and AIDS should be created with a focus of having regional networks under the umbrella body of the Namibia Women’s Health Network. The subcommittee networks will be known by their regional names for example; Khomas Women’s Health Network, Erongo Women’s Health Network, Caprivi Women’s Health networks etc. It is hoped that the NWHN will fill this void as they shall be acting as the “voice of the voiceless”.
IBIS and Khomas Women’s Health Network We have seen in there regions situation of women’s health in general including HIV it came out strongly that HIV positive women were most affected in accessing treatment, care and support services. MPs had an inauguration and we said we want to be in that committee to discuss our issues with you and they agreed – and we want to have a committee of CSO that met once a month that listen to HIV positive women and we tell committee and they can act as oversight to go to relevant ministries. We prepared women to come together - form a committee – so we formed one in Windhoek of 13 women - Khomas Women’s Health Network. They will be mediators for women from other regions. For that to happen all 13 women must be linked to two women from one region. So whatever you bring to me I will bring to monthly meeting and take to committee – this is what is coming from XX region. So we need to identify two women from each region - one young and one older both living with HIV. If young woman we want her to be very active as she will go around and take stories in connection with young HIV positive women and she tells the women in Windhoek and we take it to the parliament. These women also engage with UNAIDS who support us. We have an ally in UNAIDS as they do not feel there is political will to support HIV positive women.
We are starting to train these women from Windhoek to empower them. Ibis said can we provide 13 women from other regions to undergo same trainings. So I will identify one woman from each region. To say can you become part of this work in the regions? This is just the beginning as we want you to reach the same level as the women here. We will also take them to parliament to meet the whole committee to introduce you, engage in five day trainings. After each exercise you will engage with MPs to engage in processes of advocacy theory and practise. You see how they dilly dally – you will be in a position to say what do you mean you have not answered my question. You will also understand how the mind of the MP works.
We have 39 [check number] constituencies and there are villages – so these women will identify 5 groups in each constituency and identify five leaders that are very active - five groups of young women living with HIV. During the whole year the training of trainers will retrain those ten about how to do advocacy at the village level – so information will filter from the bottom up. If the MPs don’t respond then we will all go the media at the same time. EVALUATION Some example responses: What we liked and what we learnt: I learn that I must raise my voice if I want to help also to stand for my rights I learned about how I can advocate and how much power I need for advocacy and who can be my allies to help me make everything right. I learnt to identify issues facing young women living with HIV in Namibia and about the Positive Women Monitoring Tool as a useful tool in advocacy. I learn many things because it my first time to attend a workshop. I enjoyed being in the group with all of us we fight for one issue like being a young woman living with HIV. On sex and reproduction I was thinking that if the man said that he want what he want I should do as he says. But now I know I have the right to say no! How to talk with Honourable people and how to ask questions.
The facilitator: The facilitator was one of a kind, the way she explained in simple details which made it easier for everyone to understand and to be able to participate. I enjoy the style of facilitation a lot because she knows how to learn and she knows a lot about HIV and she tries to make sure you understand.
What was not covered in the workshop? Our children who have no space at school due to the fact that young women don’t have jobs and don’t pay the fees. I think we should have talked about ART and the lifecycle of the virus.
What I will take back home: As I go back home I will try to be in contact with other women living with HIV in order to transfer the information. I also am going to give them more information about their rights on treatment, sex and reproductive issues. I will try and get as much as I can to get more information on the subject of advocacy because that is where my heart’s desire is – we are a great team. Appendix one – questions from young women about HIV
What is the difference between HIV and AIDS? HIV (Human Immunodeficiency Virus) is a virus and is asymptomatic. AIDS (Acquired Immune Deficiency Syndrome) is symptomatic. HIV attacks the immune system. High CD4 count at first and then it drops which leads to a less effective immune system. Then one gets to the point where they are diagnosed with AIDS - showing some symptoms. Discussion discussed how treatment had impacted on a person’s experience of HIV and AIDS.
How long does it take for HIV to become AIDS? P: It can take years/weeks/days/months. Discussion continued about the influence of social factors versus a person’s lifestyle. –“There needs to be an element that we can make a difference to our own health but it is not so simple. We as individuals live in a society. In some places we have limited access to good health. We can’t just blame the individual.”
Transmission – how can I transmit HIV to a baby? The virus is in all body fluids but it has to be in certain concentrations for infection to occur (blood, vaginal fluid, semen and breast milk). MTCT occurs in 3 ways – uterus, during birth, breast feeding. In Namibia what is the policy around feeding? The information is not standardised. It is confusing and when women talk to each other they will pass on contradictory messages. Yet what we hear at the clinic, what the sister or policy says may contradict cultural beliefs – so who do you follow? We must try and give as much factual information as possible. Loads of research is providing more answers. So we may have to change our practices but it is difficult to get women to believe in that.
What about sexual transmission – how do I protect a negative partner? If I sleep with a man once can I get HIV? How do women infect men? Entry point in the vagina- healthy with no tears and cuts, no entry point. HIV has to get into the blood stream. You don’t know if any tearing has occurred. Us ladies must be careful. When I clean my vagina – insert two fingers and clean and women are sometimes told to put herbs in to making things happen – you never know. Just that little tearing with two fingers. It is a risk to say I am OK. We need a barrier. Discussion continued on vagina cleaning products.
If I have sex with a man once will I get infected? Depends – if you didn’t scratch yourself. If you have unprotected sex once it is a possibility. It may not happen we don’t know. Like pregnancy we may get pregnant. We must think about re-infections too. We must think about prevention for PLWH too. It is also easier for a woman to get HIV from a man than the other way around – that’s biological. We must protect ourselves.
Woman to woman transmission Kissing with sores in mouth, sores in the vagina and touching, vibrators and other sex toys. Heterosexuals do this kind of stuff too. Kissing is just theoretical - the evidence is non-existent. We want sex and we like it. We don’t want to make it unpleasant. How can we keep it enjoyable but safe?
When should I go on treatment? If you are pregnant – you start when you on 250. It depends on the stage of HIV not on the CD4. Doctor checks the blood to see what medication they give you. It depends on the exam – if you have enough HB etc. Your CD4 count 200 and below – it can be 300 but if you are having problems then you start on treatment - you have clinical symptoms. V: People are not giving enough information about managing their treatment.
Side affects – why do ARVs change body shape? Your body changes that the ARVs distribute fats to other parts of the body. Not just ARVs and ARVs can give different problems. They all have their different side-affects. Most are not tested on women. Side-affects that appear on women are not known. We are told when we are concerned about it that we should not worry because it is saving our lives. How can we go to the clinic and take those ARVs if we do not feel good about ourselves as women? Some women don’t take them because it’s going to change our bodies so drastically. Body image is very important and how you feel about yourself - it’s about your self esteem but a nurse is not going to take it seriously.
If my CD4 count is high can I stop taking the drug? No you can’t stop because the virus will end up with you. If you stop and start maybe you get drug resistant. You must do everything in conjunction with your doctor. Some people go on a drug holiday but it is carefully monitored by the doctor we don’t make those decision by ourselves.
If I am ARV and the condom bursts can I infect the guy? Pro: If your CD4 count high and viral load high rate is less. He can infect you with HIV and other STIs – it’s not only women that have HIV and if you use a condom there is an assumption that it protects a man but it also protects you. If the condom bursts you can both get infected and with STIs too. Gce- the different ARVs have different affects on your bodies and we are calling for research on how ARVs affect our body. The change in menstrual cycle is one of the affects but different for different women. We must take it up with ARV providers.
When you are raped you are given a neverapine tablet – what is the purpose – prevent HIV from entering into your body? To stop HIV entering blood stream if you are HIV positive it will not work. It’s not neverapine its PEP – its purpose is to prevent infection. If you report rape and two weeks later that PEP will not work. You must take it ASAP. It needs to be given to health care workers as well. Pro – if you have HIV they do not give you PEP – what does that mean? Women with HIV are denied services, when PEP can help with re-infection and maybe with STIs. We don’t know.
If you take ARVs treatment for 20 years – what does that do? It is not good to take the same drugs for 20 years. You should be on your 3rd of 4th regime – don’t take the same drugs for all that time. We need to change regiment and be carefully monitored. Ideally you and your doctor make decisions together. But we don’t want to be sheep - discuss and make decision together and not be told what to do. We don’t have many types of meds in Namibia – many countries don’t. That is also an advocacy issue. Call for universal access – but we want the right drugs for women. We need to empower ourselves with knowledge. If you don’t have information then you can’t engage in that debate.
Do HIV positive women have the right to have babies? Yes – its any woman’s right to have a baby. Discussion continued about a woman’s rights versus a woman’s responsibility. I was seriously sick and a doctor gave me my diagnosis. I did not know. I was pregnant. I decided to take the poison – they made me an abortion they said it was not necessary to carry the baby. They forced me to take the tubal ligation (TL). I could not have the abortion unless. I was so sick, I can not get counselling. I want to get a child but how can I do it now? A lot of women have experienced this – forced sterilisation. ICW have a whole project on this – how women’s Reproductive Rights are being taken away. When I was sick in 2000 in the same year I got pregnant – now the problem is whether my mother told the nurses or the nurses tell my mother about my HIV status. After two years I found out that I was sterilised. I saw the forms and I asked them - she did not answer. I did not give them the right. I don’t want a child so is my right violated? But if you wanted a child you would not be able to have one. And in three years time you may want a child. It was done without your consent so it is a violation. ICW needs to begin to document this in Namibia. Maybe there are other women out there. You don’t want a child and that maybe that is OK for you but the woman next to you does. Appendix two – Press release for YWD Namibia
HIV positive young women from across Namibia come together for the first time and demand their rights
The Young Women’s Dialogue brought together 30 young HIV positive women from the 13 regions of Namibia, in Windhoek, 21-25th of January 2008. Organised by ICW, the only international network of HIV positive women, the workshop aimed to develop young HIV positive women’s awareness of their rights and their skills to realise those same rights through advocacy. The women were provided a space to exchange their personal experiences as young, HIV positive women living in Namibia today. On the final day of the workshop, once the women had improved their advocacy skills, they were given a unique opportunity to speak directly to policymakers and ask them what they and the government were doing to address their rights.
“Together we identified the following key issues that face us:
A lack of support, solidarity and mobilisation of young women living with HIV A lack of appropriate information and services on our health and rights; A lack of representation, meaningful involvement and strategic participation of young women living with HIV in all decision-making structures; A lack of access to employment and secure livelihoods.
The problems we identified above impact on our health and happiness, on our personal and professional development as we are prevented from realising our potential to challenge the discrimination and other abuses we face.
Globally HIV infections are rising fastest among young women and Namibia is no exception. It is time to take HIV positive young women seriously and listen to us!
We call for the following: Research by and for HIV positive young women on our experiences of accessing rights and health, what service are available for us and what policies exist that address our concerns; More information on the specific health issues and rights of young HIV positive women and raise awareness of our rights across Namibia; Increase and improve services and policies for HIV positive young women; Increase our involvement in decision-making processes. This will involve building our skills and our solidarity as young HIV positive women; Ensure that enough resources are allocated to realise our goals.”
In response to the young women’s questions about improving their political involvement, financial security and universal access to treatment, among other areas, the MPs present (Honourable Elma Jane Dienda - MP, Hon Christian – MP and the Deputy Minister of Health Hon. Petrina Haingura) assured the young women that the Namibian policy on HIV stated that no-one would be turned away from a health centre because of a lack of finances and that patients should be treated with respect. They also encouraged the young women to develop a joint platform and attend regional public hearings to air their concerns. The Deputy Health Minister told all present that her door was always open if the young women wished to see her.
Finally violations of young HIV positive women’s reproductive rights were brought to the attention of the MPs present. They were shocked to learn that young HIV positive women were being forcibly sterilised at certain Namibian health centres and promised to investigate any centre that was reportedly involved.
“We are your servants not your bosses” (Hon Petrina Haingura)
“We, the young HIV positive women of Namibia, have a lot of work to do and we call on all to support us in our work, to help build our advocacy skills and to hear our voices.”
For more information contact Jennifer Gatsi Mallet – [email protected].