My late uncle, and the ethics of clinical trials in Africa

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The year I turned 11, my uncle, Josiah Ssesanga, was admitted to Mulago hospital, Uganda’s biggest, with meningitis. HIV-positive, in 1994. Between him and certain death, stood Uganda’s tattered postwar health system. Nobody was naive about his prognosis. The end of his life was months away at best. 

Treatments for HIV/Aids existed in other parts of the world, but were very limited in Uganda — mostly for patients who qualified for and agreed to clinical trials. For my uncle’s particular opportunistic infection, cryptococcal meningitis, there was a drug called fluconazole. But he didn’t know of it, couldn’t have afforded it and even among those patients who received it, only 12% survived beyond six months. 

Then, the day after his admission, “people from some American project” as my aunt, his sister, recalls it, came to them with a mountain of paperwork. The “project” was a clinical trial seeking to test a more effective combination therapy. “There were about three pages on possible side effects of the drug. We were also warned that he would need to keep taking the drugs even if the project ended,” she recalls. “But for most of us, in that hour, our answer was, ‘Yes’. We were desperate. Anything to stop that pain.” Cryptococcal meningitis causes very severe headaches. In my uncle’s case, the headaches literally drove him out of his mind. He often needed to be physically restrained. 

On the trial, he received a combination of two drugs and they gave him the so-called Lazarus effect In less than two weeks, he was discharged from in-patient care. In the subsequent months, he completed his degree at university and went on to become an inspector of schools, checking in regularly as an out-patient with the researchers. These visits often entailed painful diagnostic lumbar punctures to track his recovery. 

However, the clinical trial provided only a few months of maintenance therapy beyond the initial period of their investigation. After that, he was told to begin paying for the treatment. A week’s worth of pills would have cost more than he made in a month! He quietly went off treatment and stopped visiting the hospital. About a year later, a researcher came looking for him, among his relatives. She implored them to get him back on treatment, at his family’s cost. His two sisters considered buying him two pills a week (the adequate dosage was 14 pills) but found that they could not afford even that. Another two years later, he fell ill. After about three months, he died in the harrowing way every Aids patient without access to antiretroviral therapy did.

My family is proud that my uncle contributed to the development of combination therapy that restored hope and dignity to so many Aids patients around the world. We are also still heartbroken that he died for lack of access to the same therapy. Such clinical trials kept with a long history of medical racism by accepting African test subjects for research whose beneficiaries would be anyone but them ― at least for a devastatingly long time.

Recently, when two French doctors suggested that coronavirus vaccine trials should be taken to Africa, many Africans reacted angrily on social media, calling them racist. Even the director general of the World Health Organisation (WHO), Tedros Adhanom Ghebreyesus, described the doctors’ comments as a hangover from a “colonial mentality” and promised that “Africa can’t and won’t be a testing ground for any vaccine.” One of the two French doctors issued an apology for his remarks. Given painful personal experiences like my family’s, I understand the swift anger. 

However, as happened with the Aids pandemic, Africa will be a testing ground for some coronavirus therapies, vaccines and/or contagion controls. The European & Developing Countries Clinical Trials Partnership has, for example, already put out an early €4.75-million call for research proposals on Covid-19 in Africa. And, that is actually a good thing. The painful history of medical racism notwithstanding, excluding the continent from ongoing pandemic research would be worrisome. 

Clinical trials can be ethically done and many countries and institutions in Africa now have ethics review boards that can monitor and enforce the protocols for research on human subjects. The injustice that is harder to overcome is how geopolitical power imbalances, through patent law, ration access to the drugs that emerge from successful trials. 

In 1996, the Food and Drug Administration in the United States began approving the powerful combination therapies that came out of studies such as the one my uncle was part of. It was a watershed moment that US activists (many of them marginalised gay men) had given so much for. But it should not have been only theirs. Patients in the developing world had also given their own blood, spinal fluid and sinew, for the development of these therapies. Instead, for years, with the cover of Western patent laws, Western pharmaceutical companies priced the drugs out of their reach. Even the relatively small number of patients who had been direct test subjects like my uncle were left to die without access to treatment that they now knew existed. 

By 2000, when India’s Cipla Pharmaceuticals defied patents to produce generic Aids drugs that countries in the Global South could afford for their citizens, my uncle was long dead.

“Everything was new to us,” my aunt recalls. “We didn’t know what rights we had or if we had any rights at all — as patients or caretakers.”

The WHO director general’s declaration that Africa won’t be a testing ground is confusing (since studies are already being sought) and overlooks a much bigger problem. What we really need is assurance that Africans will receive any vaccine or treatment at the same time as any other region. 

Médecins Sans Frontières (MSF) has called on governments to “prepare to suspend and override patents” held by companies that might try to profiteer from the Covid-19 pandemic. In a March 27 statement, MSF quotes Dr Márcio da Fonseca, its adviser on infectious diseases: “In countries where pharmaceutical corporations enforce patents, we urge governments to set the wheels in motion to override these monopolies so they can ensure the supply of affordable drugs and save more lives.”

That, rather than a simple ban on clinical trials in Africa, is a solution that would have saved my uncle’s life.

Lydia Namubiru is the Africa editor of Open Democracy. 

This article was published jointly with Open Democracy. It appeared in The Continent, a new weekly Mail & Guardian publication that brings together the best news writing on Africa. To download a free copy, click here.