Advanced HIV in Kenya delaying fight against the AIDS epidemic

He agreed to this interview under strict anonymity. We meet him at the confines of his house, a one roomed semi-permanent house within one of Kisumu’s informal settlements. The 54-year-old says he is yet to reveal his status to some of his relatives and friends. 

“I was first tested in 2022. I did not believe the results. In fact, the only reason I went to the hospital was because I also had a fever that had accompanied the cough. I could not take the prescribed medication. I was in shock.”  

Nelson went on with his daily duties. As a casual labourer at Juakali market, he begun to experience shortness of breath and became severely ill. He eventually had to quit his job, as his condition worsened by the day.

“One time I think I passed out; I could only hear faint voices. I remember I was at home but by the time I came round, I was at the hospital surrounded by my family and some friends. That is when I was told I was unconscious for almost a day”.

By the start of 2024, Nelson*, at 54 years of age weighed 42 kilograms. He was a frail shadow of his former self; his mouth was full of sores and he could not put any food down his stomach. He also had trouble with his memory, as he could sometimes fail to recognise even members of his own family.

“I think part of my memory issues was the reason I consented to a HIV test sometime in March 2024. I already knew the outcome at the back of my mind, so when the doctor gave me my diagnosis and referral to a comprehensive care clinic, I just resigned to fate. I was in a lot of pain.”

Advanced HIV as an emerging threat

According to the National Aids and STI Control Program (NASCOP), advanced HIV disease, is a severe stage of infection where patients are exposed to opportunistic infections such as meningitis, diarrhoea, and Tuberculosis.

National Aids and STI Control Program (NASCOP) head Dr. Rose Wafula, says the disease is caused by either late diagnosis or treatment disruptions, which lowers a patient’s body immune system exposing them opportunistic infections.

“HIV patients need a lot of support while on treatment. Being put on a lifetime treatment is not easy for example, people default on a five-day treatment, think of a lifetime one?” 

The World Health Organisation defines advanced HIV disease as when a person has a CD4 cell count of less than 200 cells per cubic millimetre in adults and adolescents. Children below the age of 5 years are categorised to have advanced HIV since their immune systems are not well developed.

When Nelson* was tested, he was put on the first line of treatment. 

“I was surprised because I found some very good people at the facility. They spoke to me at length. In fact, they told me that they would need to re do the test. I was counselled on dieting, and general things. I felt relieved, for a moment.” 

Disproportionate AIDS related deaths vs infection

1.37 million people in Kenya are living with HIV. Women still have a higher prevalence at 890,474 while 487,710 men are living with HIV. Data from the National Syndemic Diseases Control Council estimates that 94% of people living with HIV are on anti-retroviral therapy, including 54,000 children. 

In 2024, the country recorded 20,480 AIDS related deaths. Kisumu county recorded the highest mortality at 1761 followed by Homa Bay county at 1404. Despite women bearing the prevalence of infections, the mortalities attributed to AIDS are heavily borne by men.

National Empowerment Network of People Living with HIV/Aids in Kenya (NEPHAK) chairperson, Nelson Otwoma, indicated a return of advanced HIV despite the government’s efforts to decentralise testing and increase treatment access points across the country. 

“We are mostly seeing men going back to trends that we used to see a long time ago. They test when it is already too late when they are battling opportunistic infections.” 

2,607 children also died in 2024 due to AIDS related complications. According to NASCOP, advanced HIV in children is caused by a number of factors including failure by mothers to suppress their viral load before and during pregnancy, starting breastfeeding with a high viral load as well as home delivery where mothers are unaware of their HIV status.

“The health of children who get infected at birth and early years deteriorates so fast. Half of the children who acquire HIV die by their first birthday, 70 per cent die at their second birthday,” said Dr. Lazarus Momanyi, a technical advisor at NASCOP.

Silver lining: Treatment and Research 

In Kisumu, the county government is working closely with partners in the health sector to attain the 95-95-95 target for HIV testing, treatment and viral suppression established by the UNAIDS in 2021. The Lumumba sub county hospital is one of the centres of excellence that has invested in a paperless system, to ensure adherence to anti-retroviral therapy. 

“We have assessors who do home visits to our clients. We usually pick out those who seem unresponsive to treatment so we check their environment at home with things like hygiene, whether the is an indication of abuse of other drugs, diet and stigma. It is part of the program to walk the journey with them so that they attain viral suppression”, says Stephen Abidjan, an adherence counsellor at the comprehensive care clinic of Lumumba Sub County hospital. 

Amongst people living with HIV, the most common causes of severe illness and death are tuberculosis, severe bacterial infections and cryptococcal meningitis. According to Pamela Olilo, the superintendent at Lumumba Hospital, the administration of multiple drugs is a major challenge in ensuring adherence, making most people default on medication.

There is ongoing research however to reduce the frequency of the regimen used to for the treatment of disease that pose a threat to persons living with HIV such as cryptococcal meningitis, to encourage uptake alongside anti-retroviral therapy, which is currently administered as a single tablet taken daily.

“We are developing a drug that can be given twice daily instead of four times, and the drug is also a pellet formulation that can be mixed with water to make a suspension”. Says Dr. Justine Odionyi, head of HIV, Drugs for Neglected Diseases Initiative. 

According to WHO, screening, treatment, and prophylaxis for major opportunistic infections, along with rapid initiation in to anti-retroviral therapy are crucial in decreasing deaths and stifling advanced HIV disease. Kenya has 3,873 HIV treatment sites. 

Back at his home, his treatment secured, Nelson says he is now optimistic. He is hopeful that he will be counted during Kenya’s success story in fighting the AIDS epidemic, as he took the leap of faith to get tested and begin his anti-retroviral therapy. 

“I will soon reveal to my relatives because they are the ones who really came to see me in hospital at most times, some of them say I am starting to look a bit like my former self, I think the drugs are working”. He says with a hopeful smile plastered on his face.

He has since gone back to work at Juakali, and though he is unable to do the heavy lifting as before, he is slowly reintegrating and carries the hope that he will be among Kenya’s success story in the fight against the AIDS epidemic.

“40 years down the line we have an understanding of what this virus is about what and we can do. We have been able to see people living with HIV participate in economic activities and that is what we want to build on moving forward”, Dr. Rose Wafula, head of NASCOP.