Sexual and Reproductive Health and Rights E-forum Report Now Available
ICW recently held an eight week long e-forum discussion on sexual and reproductive health and rights. It was conducted through our existing ICW members e-group. The report of the discussion will be used in the development of an UNFPA/EngenderHealth framework on sexual and reproductive health and rights of HIV positive women. To join the e-group write to info
icw.org (open to ICW members only).
ICW E-forum Report for Engenderhealth on Sexual and Reproductive Health and Rights - June 2005
Introduction
Women face significant barriers at the domestic, community, regional and national level in realising their sexual and reproductive rights and health. These include inaccessibility of health centres; poverty which makes treatment unaffordable; lack of respect for the female patient’s rights, for example, in forced contraceptive injections while receiving ARVs; judgmental attitudes among health care workers; and conservative religious bodies which deny women access to their reproductive rights. On the whole the participants of the e-forum felt that programmes are not specifically tailored to their reproductive and sexual health needs. Women were also concerned about sustaining a livelihood and caring for themselves and their families.
Sexual rights and health
HIV positive women are often unable to negotiate safe-sex practices and are more vulnerable to STIs. This is especially true for women in abusive relationships.
‘In my experience, as a woman who’s been in violent relationship in the past is that, if the relationship is violent, you are in less able to negotiate safer sex. Also, my experience is that a violent male partner would also be having relationships with other women, as way of hurting you even further, consequently the chances of STI would increase. Also, even if there are chances of succeeding in negotiating safer sex, you would not insist because you fear him leaving for the other woman, thinking may be she is not as' demanding' as you are-if I refuse giving him flesh to flesh- he'll go and get it from the other woman.
‘It is not only women in violent relationships who cant negotiate sex, men always want the upper hand in everything, sorry ladies, I don't have anything against men, and I'm sure the world will be boring without them, If you begin to start initiating sex positions for example, you get asked where and from who did you learn that? I have prospective men approach me, but the first thing I do is I lay down my terms, which include disclosing my status, and it’s on a take it or leave it basis, which more often is the leave part from the male species.’
Unfortunately women’s rights continue to be abused in the very settings where they seek help. Discrimination (by other and self), ignorance of the specific health needs of HIV positive women as well as severely under-resourced services results in critical delays in health care.
‘It is difficult to seek sexual health services for all women with HIV; I think it is even more difficult if you are in abusive relationship. Your confidence and sense of self worth gets flushed down the drain. You are scared to face the world. You are scared to be judged if you go to the clinic with signs of being beaten, in some cases, you think, why even bother, I am worthless anyway, I am leaving it untreated. In some instances you are blaming yourself for the violence which is being directed to you. When you have a STI and marks from being beaten you know that as a woman- young for that matter, you'd take the blame for being beaten, you know that people would be saying, she asked for it or she was beaten for cheating.’
‘Some women have shared that they go to a clinic because they have an STI, which they want treated but when they get to the clinic they'll say, they have a discharge because they have changed their bath liquid. They’ll be knowing very well that if they blame the bath cream for the discharge, they will get a vaginal cream prescription, which is less effective to treat an STI related discharge but they are not disclosing the STI because their fear negative consequences of such disclosure.’
‘The environment at the healthcare service is not a good one to talk about what happens to you at the home. I think this must change. We should be able to talk about all our bedroom experiences in the health care service centre. 'Having an STI or an unwanted pregnancy should not be blamed to women as we do not choose to have these; we acquire these under severe violent situations in our homes, from our lovers. There should be programmatic linkages between sexual health and violence against women. I have heard researchers in different meetings reporting that the presence of an STI and or HIV and AIDS suggests that there has been violence. Why are then no programmes which address battered women in the sexual health service?’
‘I have experienced difficulty in accessing Acyclovir in the local clinic and hospitals. Having lived with herpes for a long time I know the symptom of when it is about to manifest on the skin surface. The doctors will not give the treatment until it manifest which in most of the cases it might occur at the weekend by the time you get the chance to see the doctor; it is useless to take the meds because the virus at this stage takes its course, which is painful and embarrassing. Taking the medication as soon as the symptoms appear stops the development of the sores etc. But the doctors refuse to listen to us. I know my body and I wish that the doctors could understand that. One doctor put me on prophylaxis; my doctor at CDC (Centre for Disease Control and Prevention) stopped and asked me if I knew how expensive it is costing the hospital to provide me with the drugs. We are told seek medical help as soon as possible but the reality is that the medical team delays the process resulting to conditions of our sexual and reproductive health to get worse.’
(Mistreatment by health staff is also discussed under the section on stigma)
Reproductive rights and health
HIV positive women face conflicting pressures from partners, families, communities and health care workers to have or not to have children. A number of the e-forum participants described how health workers enforce their belief that HIV positive women should not have children. ‘A case in a CDC all women that are receiving ARVs are injected with contraceptives. The doctors argue that, the women who claim to use condoms have ended up pregnant. I have tried to raise this issue with a group of people who claimed to have an interest in women's issues, but the doctors in the group told me that "a doctor has to do what a doctor thinks is right for a patient". This particular female doctor told me how they had to inject secretly women who kept on giving bath to children. What has become of the "patients informed decisions"? Our right to make informed choices in our lives as women, our rights to motherhood? We talk of re-infection of the virus, how is the injecting of the contraceptives going to prevent this? The message I hear here is: it is okay, you can have casual sex as long as you do not fall pregnant, we don't want to worry about your unplanned child...’
‘Here in XXX there are lots of comments - that all of us who are positive should be operated on so we can't have any more children. They don't think about women who have never given birth and who want to be mothers.’
Such pressures are compounded by a lack of information on the best ways for an HIV positive woman to conceive safely as well as on healthy motherhood. This only serves to create fears among HIV positive women and their partners concerning the safety of pregnancy and child birth. Women taking part in the e-forum discussed their own fears and wishes around pregnancy as well as the external pressures they face.
‘I got married in June 2003. My husband and I are both HIV positive. My husband has two children from his first wife, now deceased. When we got married I did not have a child. I would like to have a child, but my husband does not want to at the moment - he says he is frightened that it will have a bad effect on my health. I want with all my heart to have a child - to experience pregnancy and the joy of motherhood. What should I do?’
‘Sorry for what is happening but do not loose hope and do not even get angry to your husband for he is just lacking knowledge. You still deserve with all your heart to have a child, to experience pregnancy moods and motherhood's joy and love your child. What you need to do is:
You and your husband needs to go to the HIV/AIDS-family counselor who will know how to convince your husband to be flexible with your idea and provide you skills on when you have to get pregnant according to your CD4 counts and your health. Then he/she will have to teach you how to have sex and when you get pregnant when to use the ART, a tablet that will secure your unborn child from getting HIV virus. He/she will have to give you a full balance diet to follow when you are pregnant and why to choose operation (caesarian) when having birth to your sweet child and why not the normal way (labour). He/she will then tell you when to breastfeed your child and how to raise your HIV negative adorable child!"
You have the right of sexual and reproductive health my fellow women and I believe you will be a very good example of what might be happening around your community and how to fight on justice and gender human rights especially on women living with HIV.’
Medical treatment offers hope to HIV+ mothers provided that they are adequately informed about the various stages of treatment and precautions needed to prevent MTCT (delivery by caesarean section, Nevirapine for the baby immediately following birth, and infant-formula based feeding). HIV+ women in XXX are advocating for free medical treatment for HIV+ mothers, particularly in terms of the costs of C-sections, drugs for mother and child after birth (which are not free), help with the costs of infant formula and continued treatment for mothers after giving birth, for example, ART. Women need to be given as much information and choice as possible, particularly in terms of future family planning, treatment during pregnancy, and the appropriate methods of caring for infants to prevent MTCT.
Experiences of marginalised women
HIV positive women that are also socially marginalized for other reasons, for example, because they are from other countries, are young, inject drugs or are in prison face significant barriers in accessing care, treatment and support. For example:
Migrants fear deportation and do not seek healthcare. ‘Women living with HIV/AIDS and migrants have big problems when they go to health services. This is a big obstacle, as if when they are talking to the doctor women say that they are illegal and don't have the correct documents, the doctor simply says that s/he can't give them treatment if that's what they need, although they can get medical attention and medicines for other opportunistic infections. Many foreign women have frightened to seek help because they think they could be deported. The women who use our foundation most to get information are from Dominican Republic and Colombia and who use drugs. When they are diagnosed HIV positive and go to social services, they are asked if they use drugs of any kind, and if they say yes they are not eligible for treatment, because it's considered a wasted investment and that other people could benefit more.’
Female prisoners receive treatment only in advances stages of illness. ‘Women living with HIV/AIDS in prison: They rarely get medical attention unless they are in a bad state of health.’
Young women who become pregnant are threatened with sterilisation rather than being given counselling and support.
Here in XXX we may have the highest rate of teenage pregnancies. Many young girls are being manipulated by older men for material gain and there is a lot of peer pressure also concerning material gain. I have a young mother in my Mamas Club. I so much wanted to develop a mother to mother programme where mothers could share with each other but I haven’t got another young positive girl yet. This is my first group of positive mothers. The young mother clearly said young mothers don’t fit in with older ones in counselling because there is a lot of guilt many times due to the fact that these girls drop out of school before they finish. She also said she would love us to discuss topics fitting that age and would like to hear discussions from young people.’
‘Often when they are women of 15 to 17 years old, and they are pregnant, doctors violate their rights by telling them they will be operated on so they can't have more children. I have been involved in situations where this has happened, and I try to inform the doctor of the error s/he is making, and to support the young women and seek the best for them.’
‘I come from a country were teenage pregnancies is a problem and I haven’t stop for one minute to find out what the nation is doing to address this problem. I know so little but maybe it is those type of things we have to look at when we are talking about the risk of young women and girls. We also have to be alert and follow closely how HIV positive women and girls who are teenage mothers are being treated at the health centres or what programmes are initiated because of policy provision.’
‘We must fight for an environment which suits young women those who are expecting but also those who need to access information and there should be no discrimination whatsoever.’
Injecting drug users - often IDUs do not seek treatment out of fear of stigmatisation. Aside from the negative attitudes of service providers who deem them unworthy of care they also fear losing their children. ‘Women drug users fall into the silent category for a variety of reasons. If they have children, they might be taken away from them - because of the belief that they are not fit to be mothers. If they want to become pregnant, they do not have any support. In fact they are advised not to get pregnant. If they do become pregnant (in many countries) they very often are encouraged to have a termination. If they need antiretroviral treatment, they do not get it as it is assumed that, one, they will not comply with adherence and two, it is not worth it to give it to them as they are self destructive, anyway.’
Stigma and discrimination
Access to care, treatment and support in local health centres cannot be an issue in isolation but must be considered simultaneously with issues of stigma and discrimination. The judgmental attitudes of health care workers and the wider community are a huge stumbling block for people living with HIV/AIDS. Even in developed countries such as the UK, community-wide support structures are absent, and women face being stigmatised when accessing services. In poorer settings where women face obstacles of cost, domination by a male partner, or obstruction by the extended family to accessing services, the problem is magnified many times over. Tackling stigma requires change in a host of social institutions.
‘We should not allow society to dictate how we are going to live our lives, I consider myself as a very liberated, positive woman. My community expects me to behave in a certain way; one because I am a woman, and secondly because I am positive and lastly because I am a single parent. I am not in a relationship because its a choice I have made, I often get told that my sons need a father figure in their lives, which I think is bull!!, excuse my French language. The same society that is trying to dictate how I should live will start calling me names if there are men pitching up at my place - the slut, the whore, she wants to infect others, she doesn't want to die alone, the list is endless.’
In health care settings women’s value as patients and the care they receive appear to decrease when they are tested as being positive, due to stigma and discrimination on the part of health workers. ‘In our experience- once you test positive your value as a patient depreciate due to combination of reasons including mainly the attitude of health workers. I wonder if anyone has looked at woman's ability to negotiate their care post testing positive, which I think takes a lot in terms of self worth and confidence in women.’
‘The attitude the doctors have towards patients, that they are illiterate, in most cases patients are not expected to question the doctor... Our only hope ladies is to get out there and give it our best to educate our fellow women about their sexual and reproductive rights and also their rights as patients, so that they can educate women patients. If we are waiting for the medical staff to recognise our rights, we are dreaming. It is us who have to make them recognise those rights, it is us who have a responsibility to make them respect and implement these rights.’
‘For women living with HIV/AIDS in XXX, the situation is that there is a fear of going to get tested for HIV and then being referred to a specialist where often this is where women are stigmatised and discriminated against and judged, and face intrusive questions.’
‘Our health care givers also need an attitude revamp, I go to a certain family planning clinic in the XXX metro during my lunch break, this particular instance I was 1 week late for my injection, which I thought was not an issue as I don't have any sexual activity in my life, the woman behind the desk looked at me from head to toe, asked me why I was late. I tried to explain and before I could explain, a paper was shoved into my face. In reading it I realise I am being sent for a pregnancy test 2 blocks/streets away, there is no way I would make it across town, and back to this clinic and my office during the lunch break. I tried to reason with her, but to no avail. I consider myself very responsible for my life, and if I try to explain, at least hear me out, don't pre-judge me. I need a health care worker who will have empathy to my needs and situation.’
The effectiveness of WHO’s HIV care and treatment initiatives in local health care centres worldwide are brought into question, as the appropriate community education policies have not been implemented. The quotes in this report illustrate the importance not only that service providers understand women’s rights and health needs but that HIV positive women do as well so they are in a stronger position to demand their rights.
Testing and disclosure
Negative responses to mass testing focus on the disadvantages faced by women in situations of unequal gendered power relations, for example, the assumption that women who have thus far enjoyed very little control over their lives (including their own sexual and reproductive health) can easily participate in voluntary counselling and testing. ‘How voluntary is voluntary testing and counselling? Do people have really power to opt out? Health care centres are seen as by most women as places of powerlessness? So does VCT assume that somehow, in a miracle way, this woman, who have very limited ability to negotiate- who has been subjected to subordination all her life, who as a result of her circumstances have very limited self esteem is going to meaningfully participate and decide whether she should be tested or not?’.
There is also the risk of abandonment, divorce, and/or and domestic violence upon disclosure. This is an especially salient fact for women as the majority of testing continues to happen in ANC settings. ‘Most men do not want to take the responsibility once HIV is discovered in the marriage. I have had this experience with group of HIV positive women that I work with. I also went through the same experience. The trend is the same, once HIV is discovered, the blame is put on the woman, and she’s abandoned or divorced. For the woman who falls pregnant in that condition, normally the husband is not supportive when it comes to ante-natal care at PMTCT centres. Some men even go to the extent of denying paternity of the baby as they do not want to be associated with a woman who is HIV positive. The woman seeks all these alternatives of preventing her child from getting HIV infection and looking after the pregnancy on her own.’
ICW members had a number of concerns about this. If a woman is tested during her pregnancy she may be the first in the family to be tested and/or risk abandonment by her partner and/or family. Both the burden of blame and the burden of care for children more often than not fall on the woman. Testing in ANC clinics also has the affect of moving the spotlight away from men’s responsibilities. ‘I have concerns for both-taking statistics from ANC mean that men see HIV as a disease for women- reinforcing stigma attached to women because of their very nature of being women- the bad. I think this form of surveillance also shifts the responsibility away from men, coupled with expanded access to male condom. During my days as youth worker at SAYouth Commission-you would hear young men saying- Women have AIDS we do not- as a result we get free condom to protect ourselves from them.’
Moreover, the emotional trauma of undergoing testing during pregnancy is also a concern. ‘I have severe concerns with testing women during pregnancy and during birth. Pregnancy is supposed to be an intensely emotional state of a woman's life. I think the testing for HIV during this time adds on the undue burden on woman.’
One participant questioned the point of mass testing when there is little treatment and care available. ‘Why are we testing women in the first place? What is the objective? I know that there is some access to care, treatment and support, but in my opinion it is very limited for us to be embarking on mass testing on those grounds.’
However, others felt that testing even when ARVs were not available was important because it gave women the option to look after their health and those of others. ‘I think the power of VCT is an advantage to women, even if the partner refused to go for testing. The good thing is a woman once she finds out her status, she can still go no to use protection, (the female condom) especially in cases where she suspects that the partner could be wayward and is engaging in affairs with other sexual partners. Out of mass testing, the woman still benefits, because she will make informed choices on whether or not to have a child if she finds out that she is positive. Again, if a woman finds out that she is negative, she may still try to encourage her partner to go for HIV testing and for both to disclose their status and live positively. Women are being tested especially in PMTCT programs, to prevent them from passing on the virus to their unborn baby. Knowing one’ HIV status be it for a man or a woman is one sure way of preventing the further spread of HIV because once a person knows their status, the result is bound to influence behaviour change and also the issue of stigma and discrimination.’
‘My sister is pregnant at the moment and her doctor requested that both she and her partner get tested for HIV. She (the doctor) said that she never used to suggest it but that now she advices that all pregnant women, who are her clients, and their partners get tested. Whilst I agree with you that being tested for HIV during pregnancy can be traumatic, if a woman is HIV positive, I think it is really important that she knows. This can increase her options, with regard to how to give birth to the baby and to take Nevirapine or not or start other treatments. There are also decisions to make after the birth - breastfeeding or not? In an ideal world, it makes sense to test before women and men decide to have children but it doesn't always work out that way.’
Ideally women should receive the information and support around HIV and testing when they made their decision to have a baby and not just once they became pregnant. ‘I think its best that women receive counseling during pregnancy or even before falling pregnancy and the counseling must include the issues on HIV and AIDS and how women are vulnerable to infection and how they can protect themselves. The best way to deal with this will be engaging in a vigorous campaign on HIV and AIDS awareness in the religious settings that most women attend almost every week. These will provide a platform to address women on HIV and AIDS, VCT, and any other related issues.’
‘I think it's important that women are given information which will enable them to choose whether to be tested or not. Not sure what the situation is in XXX, do all women have access to strategies and treatments which will enable them to have safe births? Not having access would make me think twice about being tested, if there was little I could do to prevent transmission.’
Treatment
Issues raised concerned the lack of attention paid to positive living and exercise in helping those that are sick gain weight, while ARVs are often wrongly prescribed to induce weight gain or treat opportunistic infection in people with symptoms resembling those of HIV/AIDS and who subsequently turn out to be HIV; and the inability of women to afford ARVs when needed.
Other services that need attention
· ‘For my part, one of the things that I hear about from many women is the lack of support when it comes to assisted conception and especially when the partners are sero-discordant. Although sperm washing is available in this country - UK - very few clinics provide it and then, it is at a cost. Also, not everyone is eligible - for instance, women who are drug users, and so on.’
· ‘Another thing that I am aware of is microbicides - and the fact that they are not tested on positive women - as yet - and so, limits our options.’
· ‘Governments must provide medication including the morning after pill and pep to help rape survivors prevent pregnancy and infection with HIV/AIDS.’
· I wish that part of CDC responsibility to female patients would be to do pap smears on site. Not sending the women off to other clinics which cost them time and money, unfortunately, most women not understanding the impotence of the paper they have been give to take to another clinic they go on with their lives. It is sad that by the time the docs take this seriously is when things are serious and I have seen a good number of HIV positive women die from cancer which should have been detected and stopped.
· ‘Our police force needs to be roped in as well, I have read horrific stories of women who go to report abusive incidents, they come back disgruntled by our systems, one lady went to report her partner for beating her up, the policeman on duty offered to drive her home as it was at night, he went and raped her, can you imagine the scars this woman is going to be left with for the rest of her life.’
Human rights instruments
One woman asked whether ‘there are HIV positive women specific treaties or agreements relating to our sexual and reproductive rights that we can use as tools? I can't think of any - in which case there is a gap that needs to be filled.’ Below are two responses to this question:
‘I am thinking of CEDAW - Convention for the Elimination of all Discrimination Against Women. I am enclosing a link from the Women's United Nations Report Network which lists a whole range of declarations - mostly on human rights.
http://www.wunrn.com/reference/reference.htm’
‘I agree, our government don’t have good policies although we have an adolescent Health policy which doesn’t really address reproductive health in full.’
‘In my experience there are declarations that enshrine the rights of women such as CEDAW and declarations that enshrine the rights of PEOPLE living with HIV/AIDS such as UNGASS partially does. However, I have yet to come across a declaration signed by States that enshrines or even mentions the rights of HIV positive women. This means as activists we have to work harder to ensure that policymakers understand our rights.
Although not signed by States a powerful declaration in my view is the Buenos Aires Declaration 2004 - Human Rights, Women and AIDS. This has been signed by a number of churches and as we know church leaders can be powerful influences in our daily lives. This declaration is on the ICW website.’
Even when policies or declarations do address aspects of women’s sexual and reproductive health and rights there is no enforcement mechanism for conventions, agreements and instruments ‘adopted’ by governments. ‘They are broad human rights declarations, (they are sometimes called instruments] The Human Rights Declaration, sexual and reproductive rights declarations, Commitment to Elimination of All forms of Discrimination Against Women, CEDAW being one of the famous one and there are declarations specific to HIV and AIDS like the International Guidelines on HIV/AIDS and human Rights. In my experience these declarations, documents and guidelines are good on paper, but do not necessarily get implemented to do the work they have been meant for- that of improving the situation of the people- in this context- women living with HIV and AIDS.’
‘The guidelines and the declaration are adopted and implemented by governments on voluntary basis. There are no enforcement mechanisms for these. In some cases you see guidelines being adopted by national governments but ending with the phrase 'subject to availability of resources'. This is very worrying. I have seen some of these declarations, like the HIV/AIDS Charter and the Sexual and Reproductive Charter being displayed in health centres, but seeing or witnessing no evidence of staff understanding what it means or living up to any of the calls, promises, and commitments it makes to services users.’
‘Many governments have policies on SRHR rotting on their shelves. What we have to do is research which are those governments and then work towards ensuring implementation. And we go into lobbying those who don’t have the necessary policies. Some governments have HIV included in adolescents SRHR policies etc. I believe that we need to know for sure and get a strategy in order.’
Moreover, those who adopt the conventions and speak the language of human rights often continue to violate the rights of women. ‘The other disempowering experience of these international declarations is when they are being discussed and referred to at policy meetings where one would be invited to contribute an HIV positive woman's perspectives on things. You'd sit in the meeting the whole day, listening to people quoting fancy acronyms, which you are not able to attach meaning to, with no one to explain what all the acronym mean and how it relates to you.
However it was felt that having information on rights and sharing experiences was important. ‘I think having information is crucial in any advocacy work, and support from other HIV positive sisters in carrying out our work.’
Policies are not just needed that directly address women’s sexual and reproductive rights but also policies that protect all rights of women. After all human rights are indivisible and women can only realise their sexual and reproductive rights if all their rights are recognised. ‘The government must review customary laws and raise awareness among communities of harmful cultural practices which infringe on the rights and dignity of HIV positive women and adolescents.’
Getting involved/making change
The women in the discussion group are involved in a range or forums, including, support groups, governmental, Country Coordinating Mechanisms (CCMs), churches, the workplace. For example,
Support groups – are sources of empowerment for women.’ My work involves creating an awareness of HIV and Aids among women. I also offer counseling services to women but those who visit my office are normally infected already so I talk to them about positive living and how they can access treatment. The post test club offers support in terms of creating friendships among the women in similar situations.’
The workplace - ‘This year I am working with captains of industry and commerce in the area of advocacy for treatment in the workplace and also stigma and discrimination, gender and violence against women.’
Churches - In January while visiting my late father, I had the opportunity to visit local schools and churches and share my story while educating people. The church I visited twice was a Diocese Catholic Church which my family goes. I had a very a very unpleasant meeting with the Bishop before I could get permission to talk in his church. The issues I brought up about condoms and contraceptives were issues Bishop would not allow me to tell me how they have helped me. He did not want newspapers prowling around his church. This was a big frustration for me because I felt I was feeding people with half information. The Catholic church is stopping women to access their right to reproductive rights saying everything should be done naturally. Natural my foot! If some of us went the natural way we would be long dead from infections our unfaithful husbands brought home to us. We might have left behind orphans of whom some might be sick and not cared for. Basically we have big group of vulnerable women stuck in some stupid theological theory, which simply does not value a woman and her well being. I don’t mean to offend anyone, but say what I see and seen for so many years.
This later example demonstrates clearly the frustrations are members feel trying to influence communities, polices and programmes. HIV positive women continually have to battle to get involved and to gain support for their issues from communities to governments and within the international arena as well. Some of the contributions concerning involvement in the Global Fund CCMs also illustrate this. For example, in Peru although there are two places on the CCM for people living with HIV/AIDS one of which is for a woman, people living with HIV/AIDS are not really involved; they have minimal roles and activities, and virtually no participatory roles.
Living positively
Overall HIV positive women are caught in a cycle of needing to care for themselves and other family members while trying to sustain livelihoods that are often insecure because of HIV and gender related stigma and discrimination. Our members have to cope with these daily realties while at the same time trying to make positive change for positive women at all levels of society. The following story captures not only the many problems and challenges but also the spirit that HIV positive women around the world against many odds continue to show.
‘I am a woman of 42 years of age and am living with HIV for the past 17 years. I am a mother of 3 my eldest son is 25 then daughter who is 21and my last child is 17. My husband died and left me pregnant with the last born. I have managed to live so far but the journey is not an easy one especially when you live in XXX where there are many challenges in a day. I work at Deseret International which is an organization which deals with prevention programmes for HIV. Our biggest challenge as an organization is funding. I have not had my salary since January 2005 including the rest of the staff. For me it means a lot because I am the sole bread winner and I take prophylaxis drugs of clyndamicin and fluconazole. For fluconazole we have a free programme in XXX but sometimes you find the drug not available. I have been fortunate enough when I met a friend called XXX who sends me ARV drugs of kaletra and combivirfor the past four years when my cd4 count went down to 4.
The problem started beginning of April when she said she can only send me one drug kaletra only then I began to feel stressed up because I have all these other problems. I love working and working hard but lady luck was not on my side. 2005 We did not have good rains as I have a small field at my rural home which makes life easier for me and my children but alas there is drought and what it means is that we have not food.
I am a survivor but I have a big mountain to climb everyday I have no house of my own but I managed to buy a piece of land to construct a house but building materials have sky rocketed There are so many challenges to climb but I am always positive about life. I live for the day and hope that tomorrow will be different. I am employed as a programme office and counsellor. I talk about how to survive even when there is no doctor. I teach widows and other vulnerable groups about health eating and alternative therapies e.g. using herbs but what I see in my country is that there is a lot of poverty and it drives women to prostituting for survival. You see why I want to start a group so we can move on with our lives. So many young women talk about sex and relationships and sometimes I have no answers and am also trying to survive. I have many clients, women who feel we have to form a group. This is where I am. Please I need information about microbicides. I love you all and I sent my biggest hug and love to every one in the ICW group. May God Bless you all.’