African Women and HIV
UK Epidemiological Update
Dr Kay Sinka, deputy head of HIV and STI reporting at the Health Protection Agency, gave an overview of the recent Epidemiology of HIV among African women in the UK. She began by telling delegates “African Women” as used in her presentation is based on data collected about ethnicity and country of birth. Using information gathered through routine surveillance at the HPA, Dr Sinka reported that two thirds of women diagnosed with HIV in 2002 were of black African origin. Sexual transmission (98-99%) is the most common route of infection, followed by blood transfusion (in Africa) with fewer than 10 diagnoses each year. Most African women were probably infected in Africa, with an increasing number coming from South-eastern Africa. Only around 50 adult black African women, infected in the UK were diagnosed each year since 2000. This is thought to be an underestimate of the true figure and there is currently a study underway at the HPA examining how well they have been estimating probable country of infection.
Most men and women are diagnosed in their twenties and thirties; women tend to be diagnosed younger. Nearly 2% of women and nearly 3% of men were diagnosed (in the UK) aged over 55.
Since 2000 the proportion of women who are pregnant at diagnosis has remained fairly steady (17 – 19%), but the actual numbers have been rising – almost 300 reported for 2002 by the end of December 2003. Over the years the proportion of women who are screened for HIV in pregnancy has also increased. However, mother to child transmission prevention interventions, such as providing antiretroviral drug regimes to infected mothers; safer delivery practices and breast milk substitutes has lead to a decrease in proportion of babies born to HIV infected mothers.
Fertility in couples in couples with HIV
The desire for women who are childless when they receive their HIV positive diagnosis often rule out the possibility of ever having children for a number of reasons, most notably fear of transmitting the virus to the child. For those in stable relationships, the desire for parenthood may be strong, but the presence of the virus in the relationship may present difficulties. Dr Simona Fiore, Clinical research Training Fellow at the Institute of Child Health, gave delegates at the seminar day an overview of fertility in couples with HIV.
It is now possible to reduce vertical transmission rate to less than 2%, therefore making the parenthood a viable option for many women. However, there are many factors related to HIV that may impact on the fertility of a couple. Fertility is a definition that applies to a couple, since for conception to take place both parties must be able to provide gametes. There is an increased prevalence of infertility factors in couples with HIV due to genital tract infections, tubal damage and dysspermia (difficult sperm).
Research has shown that couples affected by HIV request reproductive counselling and care for different reasons. In sero-discordant couples where the man is infected, the request for anti-retroviral therapy is to protect the uninfected woman and the unborn child. In couples where the woman is infected, irrespective of the infective status of the partner, the requests are to overcome infertility problems.
In a technique called sperm washing, sperm is separated from semen in which HIV can be found. This technique reduces the need for sperm donors in couples where the man is HIV positive. A residual risk of HIV transfer to the HIV negative woman still exists but is “under control”. Sperm washing is not available on the National Health Service and fertility treatment costs around £2000, a cost which is prohibitive for many couples.
Dr Fiore highlighted a number of areas in which furture research must be directed. There is no Europe-wide policy on fertility care and no standardised procedures. Researchers have no idea of the numbers of African women living with HIV who require assisted conception nor any knowledge the specific problems faced by these women. There is also a need for research into the interaction between fertility drugs and Anti-retroviral therapy.
Engaging with research from a community perspective
Positively Women (PW) is a registered charity that is committed to providing peer support for women living with HIV/AIDS . Angelina Namiba, the direct services manager at PW described how the charity involves itself in research.
HIV positive women, particularly those from Africa, are not very visibly in social and clinical research. Many policy and practice recommendations come from evidence gathered from research conducted on gay men and often does not take into the account the needs of African women. Involving community organisations in research provides access to research agendas and the whole research process. PW are aware of the possible difficulties in involving African women in research. There is the possibility that such a small population might be over-researched; such research has the potential to drain PW limited resources and participants may end up feeling exploited once the research has been completed.
In order to avoid these problems PW will only engage with researchers that as accept and understand the organisations role and responsibilities in the research from the outset. PW will only endorse research it feels is inclusive and sensitive to the needs of the participants. It is essential that participation is voluntary, inclusive, confidential and results in opportunities for improvements for participants. PW is often inundated with requests for collaboration and there are often issues around capacity and resources. It is for this reason that PW does not engage in research for individual higher degree purposes. The organisation also requires that researchers compensate participants in some way for their contribution as well as provide childcare costs or facilities.
When PW agrees to collaborate with a research project, assistance is often provided in advertising the study. Since PW do not wish to endorse researchers directly approaching individuals, or interviews taking place at the interviewees home, the organisation will discuss the project with possible participants and make premises available for research interviews. The charity will also give researchers presentation time at group meetings which ensures that the organisation as a whole is involved in research. Finally, PW will actively assist in disseminating research results and promote the benefits of research, such as improved services, treatment resources and reduced stigma..
Treatment Issues for Women with HIV
Dr Charles Mazhude and Dr Chris Wood chaired a stimulating and thought provoking discussion about Treatment Issues for African Women. Before the discussion was opened to the floor, Dr Mazhude gave a brief presentation highlighting the differences faced between men and women living with HIV. Most data about the efficacy of anti-retroviral therapy is gathered from studies using natural cohorts, which tend to have a limited number of women. The effect of these drugs on women is therefore highly under-researched and factors around body sharp, body mass, menstruation, viral load and CD4 count have yet to be fully clarified. There are many studies that have confirmed that women have higher rate of toxic reaction to ARV than men although there is little data on ethnicity.
Dr Chris Wood gave a brief presentation illustrating the prevention and psychosocial issues around women and HIV. In a study about the impact of ante-natal HIV testing, researchers found that around 73% of women had disclosed their status to a male partner. Of those who were diagnosed through ante-natal testing 75% of HIV negative male partners remained in the relationship. The study also revealed high levels of sero-discordant couples and lack of condom use is high in those couples. Given the potential impact of disclosure the question arises how far do health care providers go when a patient refuses to disclose their status to their partner? UNAIDS, in its Best Practice Collection published in 2000 recommends that: “ In the few cases in which a properly counselled HIV-positive person refuses to counsel partners, the health care provider should be able to counsel partners, without the consent of the source client….”
Management of psychosocial consequences of a positive HIV result during pregnancy may be challenging and time consuming and health care providers should be aware of the potential problems that may arise.
Last Updated June 9, 2006