International Community of Women Living with HIV/AIDS East Africa (ICWEA)
The AIDS Support Organization (TASO) Uganda
Mama’s Club Uganda
National Forum of People Living with HIV/AIDS Networks in Uganda (NAFOPHANU)
Health Rights Action Group Uganda (HAG Uganda)
Uganda Network on Law, Ethics and HIV/AIDS (UGANET)
Center for Health, Human Rights and Development (CEHURD)
Center for Integrated Development Initiatives (CIDI)
Community Health and Information Network (CHAIN)
National Community of Women Living with HIV/AIDS (NACWOLA)
Uganda Youth and Adolescent’s Health Forum
Kigezi Health Care Foundation
White Ribbon Alliance Uganda
Health Advocates Network
Health GAP (Global Access Project)
Tororo Forum of People Living with HIV Networks (TOFPHANET)
Community Statement on Elimination of Mother to Child Transmission & Keeping their Mothers Alive (EMTCT) and Access to Treatment for Pregnant Women Living with HIV Regardless of CD4 Count (“Option B+”)
We are civil society organizations and networks of people living with HIV working to end the HIV epidemic in Uganda, including transmission of HIV from pregnant women to their newborns through pregnancy, delivery or breastfeeding and ensuring that their mothers are kept alive.
Approximately one in five new HIV infections in Uganda is due to mother to child transmission of HIV—as a country we have not yet made the progress we need to ensure all HIV positive pregnant women have the services they need to protect their health and stop HIV transmission to their newborns.
However, the Government of Uganda and all partners have expressed their full commitment to fighting for an end to mother to child transmission of HIV, which we applaud and are committed to as civil society, networks of PLHIV, and women living with HIV.
A central component of Uganda’s EMTCT plan is providing HIV treatment for all HIV positive pregnant women regardless of CD4 count (also known as “Option B+”). This crucial intervention is designed to protect the health of pregnant women while reducing the risk of HIV transmission to their babies.
We strongly support Option B+. But we are gravely concerned by the lack of action in response to two major early challenges that have emerged in Option B+ implementation:
loss to follow up of HIV positive women initiated on HIV treatment; weak engagement of HIV positive women and their communities at the grassroots level in Option B+ implementation; and stigma, discrimination and inequality inhibiting HIV positive women and girls from seeking EMTCT services.
Why do these challenges matter? Because high rates of loss to follow up mean increased risk of treatment failure, drug resistance and disease progression for the pregnant woman and avoidable HIV transmission to the newborn. And weak involvement of HIV positive women and their communities means there will be weak demand for this service and that communities most
in need will not have real ownership over the program. It also means compromised quality of services that may also compromise the rights of women living with HIV. Empowered, engaged communities are at the heart of successful, high quality HIV treatment and prevention programs. The plan both at global level and national level places women living with HIV at the centre as a principle and thus this should be translated to action at implementation level.
RECOMMENDATIONS
We call on all stakeholders including the Government of Uganda, PEPFAR and PEPFAR Implementing Partners, and technical partners including UNAIDS, WHO, UNFPA, to take the following urgent actions to address these challenges urgently:
1. Ensure women access health services and are retained in care by requiring all EMTCT implementers in all sectors to bring essential follow up services into the community—specifically, by delivering support, patient tracking, medicine refills and other follow up services at the level of women’s homes and communities. For example, when women miss a clinic appointment, all Option B+ partners should immediately contact that patient through all means, including through timely home based visits and active linkage to care—so that transportation and other challenges are not barriers to services. Community health workers providing these essential services should be trained, supervised, and compensated for their work.
Maintaining high levels of retention in HIV care is a major challenge, particularly for new mothers. Data show that breastfeeding is a time when loss to follow up in HIV treatment programs is particularly high. All partners have an obligation to do their part to deliver quality services to women and support them so they are retained in care. High quality programs are not only what women deserve—they are also required in order to ensure HIV treatment is actually working and protecting the health of the woman as well as the baby.
2. Engage HIV positive women and their communities at the heart of EMTCT program design, implementation, and monitoring. Community empowerment and mobilization of demand for effective HIV prevention and treatment services are essential for program success. HIV positive women and their communities must be informed and educated about Option B+ and all other EMTCT components including meaningful participation in implementation and monitoring and evaluation so that they demand for quality services as partners. Women living with HIV must play a critical role at all levels including minimizing lost to follow up.
For more information contact:
Lillian Mworeko, International Community of Women Living with HIV/AIDS East Africa:
lmworeko@icwea.org 0772460320 or 0703975192
Proscovia Ayo, Tororo Forum of People Living with HIV Networks (TOFPHANET): tofphanet@gmail.com 0775169942 or 0702581535
Community Statement on Elimination of Mother to Child Transmission & Keeping their Mothers Alive (EMTCT)
