The first part of this three-part PREMIUM TIMES investigation examines how the collapse of donor-funded community HIV programmes, combined with years of weak government ownership, left thousands of Nigerians at risk of treatment interruption, worsening stigma and preventable deaths.
Grace* spent years protecting two things: her health and a secret she never wanted exposed.
That routine ended in February 2025.
Following international funding cuts that forced community drug delivery programmes to shut down, Grace had only one option: collect her medication herself from a treatment facility.
Someone recognised her walking into the HIV clinic, and within days, whispers spread through her church and neighbourhood.
According to her family, the stigma that followed was devastating. Ashamed and fearful of further humiliation, Grace stopped returning to the clinic for treatment.
By April this year, she was dead.
Her relatives believe her death was not simply the result of HIV, but of the collapse of the support system that had quietly kept her alive for years.
“If that support had remained,” her sister, Mary*, told PREMIUM TIMES, “she would still have been taking her drugs.”
Grace’s experience, PREMIUM TIMES found, mirrors those of many other people living with HIV in Akwa Ibom and Rivers states whose lives were thrown into uncertainty after international donor-funded community HIV programmes were scaled back in early 2025.
PREMIUM TIMES reported in January 2025 that the President of the United States of America, Donald Trump, halted HIV Funding for Nigeria and other developing countries.
Across both states, patients, peer counsellors and community advocates described a response system that suddenly lost many of the people who had ensured patients remained on treatment, received psychosocial support and overcame the stigma that still surrounds HIV.
For Mercy*, another person living with HIV in Akwa Ibom, the withdrawal of donor-supported workers disrupted services and also created fear.
“The first thing that came to my mind was uncertainty,” she said. “Everything happened suddenly. Nobody prepared us.”
When she arrived at her treatment facility after the funding cuts, many of the familiar faces who had guided patients through counselling, documentation and treatment were gone.
“You asked questions, and they told you, Your people are not here.”
Those ‘people’, she explained, were the adherence counsellors, laboratory personnel, peer supporters and other workers funded through donor-supported programmes who guided patients through documentation, counselling and treatment.
Without them, many patients were left confused about how to navigate the clinics.”They knew us, followed up when we missed appointments and treated us with compassion,” Mercy said.
She fears that replacing donor funding with government ownership alone will not be enough unless authorities invest in trained personnel and patient-centred services.
“Medication alone is not enough. People also need encouragement. They need someone who genuinely cares whether they survive,” she said.
The withdrawal of donor support also ended programmes that many patients described as the backbone of HIV care outside hospitals.
Home-based care stopped, community HIV testing reduced, support groups that helped people cope with stigma were no longer available, and routine follow-up for patients who missed clinic appointments ceased.
For Johnson*, a former community referral officer in Rivers State and a person living with HIV, the disappearance of home-based drug delivery remains one of the greatest losses in HIV response.
Every day after work, he travelled across communities delivering antiretroviral medicines to patients who could not safely visit treatment centres because of work schedules, lack of transport fare or fear of being recognised.
******PHOTO: Johnson speaking with PREMIUM TIMES during an interview
The programme ensured they never missed treatment. However, that support no longer exists. “Many of those people are no longer coming to the facilities, and we don’t know where some of them are anymore,” Johnson said.
According to him, patients who repeatedly miss appointments are eventually classified as “lost to follow-up”, a development that worries health workers and people living with HIV because interrupted treatment can lead to viral rebound, illness, increased transmission and, ultimately, preventable deaths.
Elizabeth Udo, Akwa Ibom State Coordinator of the Network of People Living with HIV/AIDS in Nigeria (NEPWHAN), said the organisation has witnessed similar experiences across the state since donor-funded community HIV programmes began to shrink.
“We have lost people,” she told PREMIUM TIMES.
“They did not die because HIV treatment stopped completely. Many died because the support systems that helped them remain healthy disappeared.”
