In order to prevent vertical transmission of HIV, it is critical that the perspectives and concerns of women living with HIV are meaningfully considered. Therefore, to inform the 2013 World Health Organization Consolidated Guidelines Process, the International Community of Women Living with HIV (ICW) and the Global Network of People Living with HIV (GNP+) held focus group discussions in Malawi and Uganda with women living with HIV and their communities. The women and community members shared their perspectives and concerns, and made programmatic recommendations based on their lived experiences.
The goal of the focus group discussions was to understand participants’ perspectives on Option B+, a program designed to prevent vertical transmission. Option B+ recommends that pregnant women living with HIV begin triple antiretroviral therapy (ART) as soon as diagnosed with HIV and continue the therapy for life. This is different from other programs, Options A and B, which recommend that pregnant women living with HIV stop treatment after the risk of transmission to the child has passed, unless their CD4 count is below 350 cells/mm3.
Almost all participants from both countries were happy that Option B+ protects infants from acquiring HIV and that it will likely increase access to ARVs for women who need them. However, there was a notable lack of consensus regarding the extent to which Option B+ will impact the closely interwoven dynamics of disclosure, conflict, and violence. Additionally, participants noted that HIV-related stigma from health care providers continues to prevent some women from accessing antenatal care.
All focus group participants reported that women living with HIV were not meaningfully involved in their countries’ decision-making process to adopt and implement Option B+.
“No women living with HIV of childbearing age were consulted. They sit at the top and think they speak for us…We are not aware of what is taking place…. For us here, we are left out. I’m 18 years old, you are telling me drugs for life?”
– A young woman from Uganda
Participants wanted more advocacy led by women living with HIV to ensure that governments and funders understand and provide for the needs of pregnant women living with HIV, including protecting their right to informed consent and to “opt-out” of lifelong treatment.
“From my experience, the women, they are not given a choice. If you like it or not, you have to take treatment because it is for your health and the health of your child.”
– A young woman from Malawi
Focus group participants offered recommendations to improve the implementation of the new protocol. Most notable was their identification of the need for clear information about counseling around treatment initiation, the risks and benefits of beginning treatment for life, and guidance around the best breastfeeding options for each individual. Additionally, male involvement and sensitization were also mentioned as approaches that should be encouraged at all stages, including through couples testing and counseling programs. Participants also noted that male involvement should never be made a requirement for women to access care. The focus group participants also identified areas that need further research so that women can make informed and empowered decisions about their health.
The results of the focus group discussion demonstrated the importance of including affected communities in policy-making. Taking into consideration the perspectives and experiences of women living with HIV is critical in order to ensure that programs respect human rights, increase demand for services, and improve retention and adherence.
To read the full report, please visit: http://www.emtct-iatt.org/2013/04/understanding-the-perspectives-andor-experiences-of-women-living-with-hiv-regarding-option-b-in-uganda-and-malawi/.
This post is part of a blog series on maternal health, HIV, and AIDS. To view the entire series, click here.
Learn about the MHTF’s recent technical meeting focused on maternal health, HIV, and AIDS, here.
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