Women and girls living with HIV in Uganda, Kenya and Tanzania are calling for stronger safeguards in health services, workplaces, legal systems and digital spaces as changes in HIV care and technology create new risks of violence, stigma and unwanted disclosure.
The call follows research commissioned by the International Community of Women Living with HIV Eastern Africa under the THRIVE project, in partnership with ICW Kenya and DWWT Tanzania, with support from the UN Trust Fund to End Violence Against Women and Girls.
The research found that some interventions intended to improve HIV prevention and care can have unintended consequences when safeguards are weak. Assisted partner notification, for example, can help identify partners who may need HIV testing, but participants reported consequences including relationship breakdown, financial abandonment and increased exposure to intimate partner violence. HIV self-testing also raised concerns around privacy and safety.
The researchers argue that the response should not be to roll back HIV services, but to make them safer and more responsive to the women using them.
“This is not a call to dismantle the systems that have been built. It is a call to make them safer, more responsive and more accountable to the women they are intended to serve,” the research states.
Privacy risks in health facilities
The study identified confidentiality concerns in integrated HIV services, including outpatient clinics where women living with HIV may receive care alongside other patients.
At some study sites, participants reported that treatment books or cards were placed on an open triage table before patients were called to see a health worker. The cards were reportedly identifiable by their colour, potentially making a person’s HIV status visible to others in the facility.
One woman described being questioned by another patient about why she was at the health facility.
“Actually, because of this, the woman I was seated with kept asking me about what I had come for,” she said.
A Kenyan health worker interviewed for the research said integration could overlook the emotional consequences of placing women in environments where health workers and communities may not be adequately prepared to deal with HIV-related stigma.
The researchers warn that such experiences could discourage women and girls from seeking HIV treatment and care, potentially undermining gains in treatment outcomes across the region.
They recommend stronger training for health providers, confidential service environments, informed consent, risk assessment and referral mechanisms, alongside continued access to peer and psychosocial support.
Online spaces bring new risks
The risks identified by the research extend beyond health facilities.
Digital platforms have created opportunities for women living with HIV to access information, connect with peers and participate in advocacy. But the research also found technology-facilitated violence, including online harassment, cyberbullying, threats and the non-consensual disclosure of HIV status.
Young women and adolescent girls were identified as particularly vulnerable. Participants described situations in which trust built online was broken when screenshots containing information about their HIV status were shared, followed by hostile comments and harassment.
“There are a lot of women who have been attacked, and it is hard to regulate,” a Ugandan advocate said. “It is very painful because it spreads fast and reaches many people, and once something is online, you cannot really take it back.”
The research calls for digital safety to become part of the HIV response, including greater awareness of online risks, digital literacy, confidentiality protections and mechanisms for reporting and responding to technology-facilitated violence.
Funding cuts add another layer of vulnerability
The researchers also link changes in HIV financing and service delivery to new pressures on women living with HIV.
Participants in Uganda and Tanzania reported reductions or complete loss of community-based HIV treatment and support services following changes in HIV funding. Services such as appointment reminders and community-based antiretroviral therapy delivery had been removed in some settings.
For women who depend on community-based services because of distance, cost, stigma or mobility constraints, the loss of these services can make access to HIV care more difficult.
The research also identifies fear of disclosure, discrimination, compulsory HIV testing, breaches of confidentiality and punitive legal environments as factors that can discourage women from seeking support or participating openly in advocacy.
Women want a role in designing the response
The research says women living with HIV should be involved in shaping the policies and systems that affect them.
It identifies structural violence, stigma and discrimination, as well as laws criminalising HIV transmission, exposure and non-disclosure, as factors that can weaken the organising power of women living with HIV. The researchers say such laws can disproportionately affect women, who are more likely to be tested during pregnancy or through health services.
The recommendations include stronger confidentiality and informed consent in HIV services, review of HIV-related laws and policies, greater protection against technology-facilitated violence, survivor-centred support linking HIV, gender-based violence, justice and social protection services, and greater investment in the leadership of women living with HIV.
The researchers say the systems needed to support women already exist in many cases, but need to be made safer and more responsive.
“Women living with HIV are not simply recipients of services. They are rights-holders, leaders and experts in their own lives,” the research states.
The organisations involved in the research are calling for continued collaboration across Uganda, Kenya and Tanzania to ensure women and girls living with HIV can access health services and participate in public life without fear of violence, discrimination or unwanted disclosure.
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