I am first and foremost, a mother living with HIV, having been diagnosed over a decade ago. I am also a treatment and microbicides advocate and believe passionately in working for the day when treatment care and support will be available, affordable and accessible to all people living with HIV globally.
I am also a Project Manager for Positively UK, which provides support and services for people with HIV. I currently manage the “From Pregnancy to Baby and Beyond” Project. This aims to provide information, practical and emotional support for women with HIV through all stages of ante-natal to post-natal care. This project is very close to my heart as it further upholds sexual health and reproductive rights for HIV-positive women. I strongly believe that a safe sexual life; access to good quality healthcare, including appropriate contraception information, and advice and access to regular well-women check-ups; and the ability to choose whether or not to have children are three basic human rights that every woman living with HIV should have access to, globally. I am also a strong believer and advocate for the meaningful involvement of people living with HIV in all that affects our lives.
There are currently no UNAIDS statistics for African women with HIV in Europe. However, given that about 70% of HIV-positive women in the UK were born in Africa, this seems a strange omission. They face a myriad of issues daily in addition to their HIV. At personal levels, these include dealing with a new HIV diagnosis; disclosure to their partners, children and families; access to and understanding the complexities of HIV treatments; language; issues of gender violence and those of social isolation and a tendency to turn to drugs and alcohol to numb this. Many of the women have lost children because of AIDS and are still dealing with the grief of their loss years later. They also face the loss of friends and relatives, either through AIDS or through civil war; poverty; and uncertain immigration status, since being so isolated and afraid makes it difficult for asylum-seeking women to access services. Inevitably, chronic mental health issues affect a lot of them.
At family level, in the UK women with HIV face the burden of care for other relatives living with HIV, often neglecting their own health, with dire consequences. Many are emotionally, economically and even legally dependant on their partners and therefore have little or no say in whether or when they have sex or in negotiating safer sex. They also face issues around starting and maintaining relationships and in particular around dealing with disclosure, further exacerbated by inhumane laws regarding HIV transmission.in the UK and elsewhere. And they face lack of access to sexual health and reproductive rights, including making decisions about whether or not to continue with pregnancies when faced with an ante-natal HIV diagnosis; as well as options around childbirth and breastfeeding; testing children and making decisions about the after-care of their children.
At community level, women face the age-old problem of stigma. Continual press portrayal of HIV-positive people who are foreign, emaciated, disempowered, disenfranchised and poor only exacerbates their existing fears. It also further discourages disclosure. It is true that 70% of women with HIV in the UK were born in Africa - but that also means that 30% weren’t. Unfortunately media portrayal still focuses either on sick people with HIV in Africa, or on tabloid racist images of Africans coming here to access the NHS and prey on the innocent British – whilst neatly side-stepping the fact that many metropolitan NHS hospitals and care homes across the UK would collapse without African workers. Further, African women living in the UK still have to deal with a number of harmful cultural practices, including genital mutilation, wife inheritance and lack of inheritance rights when their husbands die. Many of these women have to battle continually also with some of the conflicting messages and teachings around HIV and religion. Small wonder that for many women, dealing with their own HIV often takes a back seat.
It is heartening, therefore, to see that, some 65 years on, the United Nations has finally agreed to set up UN Women, to promote equality for women globally. This finally puts women where they should always have been, at the very heart of development and at the forefront of the fight against rape, female circumcision, child mortality and poor healthcare.
I am involved in several conference sessions. I am co-facilitating two skills building workshops: on “Developing the Voice and Visibility of women with HIV: from isolation to involvement” and on producing a magazine by and for HIV-positive women. Secondly, I am presenting research findings on why people with HIV don’t like accessing health care through their family doctors. These include their concerns about confidentiality and inevitable lack of GP specialist knowledge – for instance about medication interactions with other conditions. Thirdly I am speaking at a satellite symposium about positive women’s networking globally. I am also going to the conference so that I can continue to develop by learning, participating and sharing knowledge and skills.
There are three things that I would like to see from the conference. Firstly; the increased voice and visibility of HIV-positive women globally. Secondly: a commitment from key stakeholders to ensure the involvement of HIV-positive mothers in development of peri-natal policies and practices. Last but not least, a concrete set of action plans that will lead us three steps closer to achieving the 3 Millennium Development Goals on women’s empowerment, maternal health and combating HIV, malaria and other diseases. All 3 MDGs affect African women deeply.
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