KISUMU, Kenya July 8
It began with a whisper.
A whisper of pain.
Of fatigue.
Of silence.
In many corners of Kisumu, people living with HIV are slipping into advanced stages of illness before anyone notices. Not because they do not want treatment, but because their bodies are already overwhelmed. They are not defaulters. They are not failures. They are often misunderstood, mistreated, and too often, too late.
This silent emergency is known as Advanced HIV Disease. It claims lives quietly, feeding on gaps in the system such as delayed testing, lack of diagnosis, expensive medicine, and stigma that cuts deeper than any symptom.
Yet inside the Jaramogi Oginga Odinga Teaching and Referral Hospital conference hall, a different sound rose.
It was not a whisper.
It was a call.
A call of urgency. A call for dignity. A call for action.
A gathering of mentor mothers, AHD champions, community health promoters, people living with HIV, and service providers had come together.
Brought in by Afrocab and the Thrive Project, this was more than a workshop. It was a declaration. A moment of reckoning for a disease that hides in plain sight and for a community that refuses to let another life be lost simply because help came too late.
Advanced HIV Disease, or AHD, is defined by the World Health Organisation as having a CD4 count below 200 or being in WHO clinical stage three or four. But for the people seated in that room, AHD was not just a clinical term. It was a lived reality. A daily fight.
Recent data from NASCOP paints a sobering picture. Between 30 and 40 percent of newly diagnosed people living with HIV in Kenya are already in advanced stages when they arrive at care.
And Kisumu, Kisumu carries one of the highest HIV burdens in the country, over 11.7% percent, far above the national average of 3.3% as of January 2024. This makes the need to confront AHD not only urgent but life-saving.
Without timely detection and treatment, people with AHD face deadly infections like cryptococcal meningitis and tuberculosis. Yet too often, those who are seriously ill are misunderstood. In their homes, in their communities, even at health facilities, they are wrongly seen as careless, as defaulters, as people who have failed themselves.
This dangerous perception feeds stigma. And stigma silences. People withdraw. People stop their medication. Some never return to care. And many of those stories end in death, deaths that should never have happened.
CD4 testing, the gateway to identifying AHD, is still inconsistent. Stockouts are common. Many health facilities are not fully equipped to test on time or on-site. And even when a diagnosis is made, the cost of treatment remains a heavy burden.
Medicines like amphotericin B and flucytosine, used to treat cryptococcal meningitis, are available in limited supply. They are expensive. And for too many people, out of reach.
But there is hope.
The JOOTRH session focused on early detection. And the power it holds. When AHD is caught early, it can be treated. It can be prevented. Lives can be saved.
CD4 testing in Kenya has seen a major revival. From 50,359 tests in one year to 96,964 the next. That is progress. Kenya has also increased cryptococcal antigen screening from 26,918 to 31,095. But the gap between need and supply remains wide, especially in rural areas and informal settlements.
As discussions unfolded, one truth stood tall. Community awareness must rise. People need to know what AHD is. They need to know how to detect it. They need to demand it. They need to protect each other.
Voices in the room spoke from the heart
A mentor mother shared the experience of a young man who struggled with meningitis because the diagnosis came too late
Another spoke about an eight-year-old child who faced challenges with tuberculosis but was never assessed for Advanced HIV Disease
These stories are not just stories
They are powerful reminders
That we may be losing lives
Not because help is not available
But because AHD is not being identified in time
It is time to act
Time to listen
Time to respond
These stories are not statistics. They are scars on families, on communities, on systems that failed to act in time.
There were solutions too. Calls to make AHD support an indicator in Community-Led Monitoring. To ensure facilities are accountable. To strengthen labs with equipment, with trained staff, and with consistent reagents.
One loud appeal stood out. Support people living with HIV to register and contribute to the Social Health Insurance Fund. It is the only way to reduce out-of-pocket expenses, ensure access to life-saving tests and treatments. In the spirit of universal health coverage, health must not be reserved for the rich. It is a right. Not a privilege.
Kenya has now designated 140 facilities as AHD centres of excellence, including JOOTRH. These centres are staffed. Equipped. Ready. But they cannot do it alone.
Rural communities still lack services. People with disabilities are overlooked. Adolescents and young men often delay testing until it is too late.
The call for optimal treatment rose with clarity.
Not as a demand.
But as a promise.
A promise that no one should die of HIV in silence.
A promise that lifesaving medicines will reach the people who need them most.
A promise that the health system will listen, respond, and protect.
As the day came to a close, something shifted. This was no ordinary training.
It was a spark.
A fire of responsibility.
A flame of hope.
Because behind every CD4 result is a name. A story. A dream.
And from the heart of Kisumu, from the conference hall of Jaramogi Oginga Odinga Teaching and Referral Hospital, a figure rose.
Advanced HIV Disease will no longer be ignored.
Not while there are voices to speak.
Not while there are hands to heal.
Not while there is still time to act.
