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HIV Response
Why the HIV Response Must Evolve for People Already Living With HIV

Released: August 01, 2025

Nomonde Ngema
Nomonde Ngema
Activity Information

Activity

Key Takeaways
  • The HIV response must prioritize people already living with HIV, in addition to HIV prevention.
  • Pill fatigue is a real psychological and practical barrier to treatment adherence, and long-acting ART must be made more accessible, especially in developing countries with a high HIV burden, such as sub-Saharan Africa.
  • Integrated and holistic health services for HIV, sexual and reproductive health, and noncommunicable diseases are critical for sustainment of lifelong health.

Prioritizing People Living With HIV
The HIV response has done incredible work in prevention. But somewhere along the way, it lost sight of the very people it was built for. This is illustrated by the stark disparity between HIV care in developed and developing countries. For example, sub-Saharan Africa, where I live, has one of the highest HIV burdens in the world. However, most of us are still expected to take daily pills, whereas long-acting, injectable antiretroviral therapy (ART) has been available in the United States for many years.

At IAS 2025, I saw much science focused on HIV prevention. That is important. But what stood out for me was how few sessions there were about improving the lives of people already living with HIV. We are still here and our needs are urgent. In particular, I believe that more must be done to support engagement and retention in HIV care, as well as ART adherence. I have been living with HIV most of my life. I know how hard it can be to stay on treatment—not because we don’t want to, but because of the lack of privacy and support from healthcare professionals. 

The Reality of Pill Fatigue
Pill fatigue is real. It affects how we plan our day and think about the future. One of the few sessions that gave me hope was presented by Dr Cissy Kityo Mutuluuza, who spoke about the betterment of the lives of people living with HIV. She showed how long-acting ART could reduce the psychological pressure of daily pills and give people a greater sense of control.

Ultimately, it is not just about fewer doses—it is about freedom. As Yvette Raphael said during the conference, “Pill burden isn’t theory; it’s a real struggle. If we prioritize [a long-acting formulation for HIV prevention], then we need to prioritize it for treatment too.”

Integrated Health Services
We also need to talk about how care is delivered. In many African countries, sexual and reproductive health and rights services and HIV treatment are still offered separately. For young women like me, that means going to different clinic rooms: one for ART, one for contraception, maybe another one for mental health. This setup increases stigma and makes it harder to stay in care. It sends a message that our lives are not fully connected.

When sexual and reproductive health and rights and HIV services are integrated, care becomes simple and convenient. We feel more considered and more likely to stay engaged with treatment. As Dr Linda Gail-Bekker highlighted, linking HIV and sexual and reproductive health and rights services is key to delivering better care and better outcomes, especially in our region. Years ago, the UNAIDS proposed addition of a fourth 90 to its 90-90-90 Treatment Targets, calling for a greater focus on long-term health and well-being. However, in many places, we are not there yet. 

Differentiated Service Delivery: Beyond HIV Treatment
IAS 2025 also highlighted increasing concerns about rising rates of noncommunicable diseases, such as hypertension and cardiovascular disease. We are seeing the same across the sub-Saharan region. I think this demonstrates that our systems must evolve to support not just survival, but lifelong health. Applying principles of differentiated service delivery to noncommunicable diseases could enhance access and promote effective management.

In all, we are not asking for miracles; we are asking for fairness. People living with HIV continue to face unmet needs. Our care must evolve alongside us, responding to the realities of our lives rather than handing us outdated models. The future of the HIV response must meaningfully include us, not only in language but in systems and innovations that shape how we experience care every day. 

Your Thoughts
How can healthcare systems—especially in resource-limited settings—be restructured to better support the long-term well-being and dignity of people living with HIV? What changes can you make in your own day-to-day practice to prioritize quality of life for people living with HIV? Leave a comment to join the discussion!