In the late 1990s and early 2000s, Africa – and my home country, Kenya – was gripped by the HIV/AIDS epidemic.
There were 36 million people living with HIV/AIDS globally at the end of 2000. 70% of the adults and 80% of the children living with HIV in the world that year were in sub-Saharan Africa.
By far, the majority of these patients fell in the most economically productive age bracket of 15-49. Fresh out of medical school, as young healthcare professionals, we found ourselves on the sharp end of this challenge. The epidemic was rampant, and our resources were scarce.
At the local hospital, we would gather for ward rounds, and due to the high number of patients with end-stage AIDS, our professors would typically declare that they would only review the two or three non-AIDS patients with us — because there was not much to be done for AIDS. Care of AIDS patients was thus left to nurses and junior doctors.
As a result, young doctors like myself had to manage many patients with end-stage AIDS who had essentially come to the hospital prepared to die. It was a gut-wrenching experience that would forever shape my perspective on healthcare and indeed my career choices.
The most significant challenge was the process of diagnosis. Patients needed to undergo mandatory and lengthy pre and post-test counselling.
Further, there was no outpatient testing. It all had to be done in a hospital setting. This was a formidable barrier to testing due to the paucity of trained counsellors — often just the hospital matron in a 400-bed facility.
The diagnostic tests available then were complex and time-consuming, often leaving patients waiting a week or more for their results.
This was a cruel extension of the uncertainty they already faced. To make matters worse, post-test counselling of patients with positive results was very much akin to handing over a death sentence. There simply was no treatment option.
There was also widespread stigma that surrounded HIV/AIDS. I knew surgeons who would flatly refuse to operate on a patient if they had clinical AIDS or lacked a negative HIV test result.
Sadly, in the community, it was often the case that people avoided shaking hands or even sharing utensils with relatives or individuals who had clinical AIDS.
Given the absence of scientific information, communities crafted their own explanations for clinical AIDS. In my community, they referred to it as “Chira,” a term that essentially means “Curse” in the Luo language.
People believed someone in the afflicted’s lineage had committed a grave transgression against traditional practices, leading to the curse and their inevitable death.
The circumstances prompted me to set up one of the first HIV Comprehensive Care Clinics in government service before the advent of life-saving Antiretroviral medicines (ARVs). I decided to affectionately call it “The Family Clinic”.
We based The Family Clinic at the Kilifi District Hospital – then a very remote facility on the coast of Kenya — with a little shining beacon of hope that was the Kemri-Wellcome Trust Malaria Research Facility where I was primarily employed.
My employer donated my time and a modest pharmacy of drugs to treat opportunistic infections. I was thus able to run this HIV clinic one day every week. Simple as it was, that was one of the best things I have ever done in my career.
Much of my time was spent talking to patients who commonly faced depression following their diagnosis.
Most patients came in not understanding the gravity of their diagnosis – many were hearing the term ‘HIV/AIDS’ for the first time. I had to explain their condition to them over several sessions.
My heart always fluttered as I watched any hope they had turn into deep despair when they realised they only had a short time left to live. I remember one young lady, though. Her name was MC, a local woman of about 27 years old.
MC was different. She had five children, could not recall any of their fathers and sold moonshine for a living, often arriving at the clinic under the influence of alcohol, giddy and quite optimistic — the kind of patient one never forgets! Despite her diagnosis and circumstances, she always remained optimistic and happy, and I remember laughing a lot with her.
I guided her to cut down on her alcohol use and advised her to focus on her children and her overall health. Over time, we became close friends. It was surprising that she never succumbed to depression despite understanding the gravity of her diagnosis.
As my patient count rose to around 300, many of whom died, having progressed to clinical AIDS because there was no treatment available, I began to rethink my career. At this stage, ARVs were available in the West but were astronomically expensive and far beyond our reach. I wanted to direct my career to where it would count for millions of patients like MC across Africa.
Eventually, I left for London to further my studies and then went on to build a career in the pharmaceutical industry. A decade after I had left, I was invited back to the Kemri-Wellcome Trust Research Unit for an anniversary celebration.
When I returned, the Family Clinic, which was once a single, dilapidated room next to the TB clinic, had been completely transformed into a professional, organised facility. It was far bigger and more sophisticated, and when I was invited to see a few patients again, I agreed despite feeling rather rusty. There were now thousands of patients on regular follow-up with universal access to ARVs.
My first patient walked in. She looked healthy and happy. She asked if I remembered her. I drew a blank.
But when she hugged me, I realised it was MC! She had survived, thanks to ARVs that were introduced a few years after I had left. This emotional reunion reminded me that there’s always hope, no matter how bleak things may seem. Just start — even when the end isn’t clear.
Today, diagnostics have evolved from cumbersome ceremonies into rapid, accessible point-of-care tests. The requirement for counselling has been streamlined, and what was once a complex cocktail of medications administered multiple times daily has been simplified to a single daily pill. This eases the burden on patients and improves treatment adherence.
Diagnostics and treatments reach even the most underserved communities. Clinical AIDS cases have dwindled – becoming almost non-existent thanks to early diagnosis and the evolution of ARVs. And thanks to freely available information and education, the stigma has also diminished.
The theme of World AIDS Day 2023, “Let Communities Lead,” resonates deeply with this transformative journey. Communities have emerged as vital agents of change in our battle against HIV/AIDS, dispelling myths and supporting those affected. Communities throughout Africa have taken charge of their response to HIV/AIDS, recognising it as a chronic condition that can be managed.
Looking ahead, the road to defeating HIV/AIDS is still long. We must safeguard the gains we have made because the virus has not gone away. Our continued commitment to research, development and community-led initiatives is crucial.
Africa remains disproportionately affected by HIV
In 2022, there were 20.8 million people with HIV in eastern and southern Africa. The continent’s economic powerhouses, South Africa and Nigeria, are among the 10 countries with the most HIV cases (South Africa at 7,800,000 in 2020 and Nigeria at 1,700,00 in the same year).
As diagnostics continue to evolve, integrated testing is on the rise, using existing infrastructure to test for several diseases simultaneously, making testing more affordable and efficient. We anticipate better treatment options on the horizon and possibly even the ever-elusive HIV vaccine.
Diagnostics have historically been grossly underfunded. Most people may not realise that on average, less than 5% of national Health budgets go to diagnostics.
This year, the WHO (World Health Organization) member countries voted to adopt the resolution on “Strengthening diagnostics capacity”. With early diagnosis being prioritised across the continent, more people have a chance at getting treatment. A resolution, however, is not legally binding; and funding is never guaranteed.
One of the most prominent patrons dedicated to ending HIV/AIDS by 2030 – The U.S. President’s Emergency Plan for AIDS Relief (PEPFAR) – faces an uncertain future. We can’t take our foot off the pedal yet, especially with key funders under fire.
Local governments must recognise that we need to reallocate existing health budgets more strategically. Public health allocations should strike a better budgetary balance between diagnostics and treatment.
Finding the right formula is a collective effort involving public-private partnerships that also allow governments to leverage private resources to serve more patients.
Ongoing investments in medically focused human capital are vital, and when all these building blocks fall into place, an end to HIV/AIDS could be in sight.
Here’s to survivors like MC, who allow themselves to live in hope! We celebrate what we have achieved so far, but let’s continue to partner to build better healthcare systems, drive access for all patients and eradicate stigma.