The year I turned 11, my uncle Josiah Ssesanga was admitted to a hospital in Uganda with meningitis. It was 1994, and he was HIV positive. Between him and death stood a tattered post-civil war health system.
Treatments for HIV and Aids existed in other parts of the world, but in Uganda they were mostly limited to those used in clinical trials. For my uncle’s particular infection – cryptococcal meningitis – there was a drug called Fluconazole. But he didn’t know it existed; regardless, he wouldn’t have been able to afford it. and even among patients who took it, only 12% survived beyond six months.
The day after his admission, “people from some American project” arrived with a mountain of paperwork, my aunt remembers. They were doing a clinical trial testing 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,” my aunt says. “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. These headaches drove uncle Ssesanga out of his mind and he often needed to be physically restrained.
Once on the trial, my uncle received a combination of two drugs with rapid results: in under two weeks, he was discharged from inpatient care. In the subsequent months, he completed his university degree and became an inspector of schools. He would return to the hospital to meet researchers and had to endure painful lumbar punctures to track his recovery.
However, the clinical trial provided only a few months of therapy beyond the researchers’ initial period of investigation. After that, my uncle was told to start paying for his pills. A week’s supply alone cost more than he earned in a month. He quietly stopped the treatment.
About a year later, a researcher came looking for him. She implored my relatives to get him back on treatment. But there was still not enough money. Two years later, he fell seriously ill and died in the harrowing way every Aids patient without access to antiretroviral therapy did.
Today my family is proud that my uncle contributed to the development of combination therapy that restored hope and dignity to so many Aids patients globally. But we are still heartbroken that, for him and many other African patients, their contribution to these advances was unmarked and thankless.
Now I fear that we will replay this painful script again as we face the coronavirus pandemic.
Recently, two French doctors suggested that coronavirus vaccine trials should be done in Africa: the continent with the lowest numbers of confirmed cases so far. Speaking on French TV, one said: “If I can be provocative, shouldn’t we be doing this study in Africa, where there are no masks, no treatments, no resuscitation?”
Given the long history of medical racism and painful experiences like that of my family’s, some Africans were understandably annoyed, calling these comments racist and akin to treating people as “human guinea pigs”.
Tedros Adhanom Ghebreyesus, the director general of the World Health Organization, described the doctors’ comments as a hangover from a “colonial mentality”, and said that “Africa can’t and won’t be a testing ground for any vaccine”.
And yet – as happened with the Aids pandemic – Africa will certainly be a testbed for some coronavirus therapies, vaccines or contagion controls. It already is. The European and Developing Countries Clinical Trials Partnership (EDCTP) has, for instance, put out an early €4.75m call for research proposals on Covid-19 responses in Africa. And this is actually a good thing.
Excluding the continent from ongoing pandemic research is not the answer. Clinical trials can be ethically done – and many African countries and institutions now have ethics review boards to oversee this research.
The injustice is in how geopolitical power imbalances, through patent law, ration access to the drugs that come out of successful trials. In 1996, the United States began approving the powerful combination therapies to treat HIV and Aids that came out of studies like the one my uncle was part of. It was a watershed moment for US activists (many of them marginalised gay men).
But it should not have been only theirs. Patients across the developing world had also given their own blood, spinal fluid and sinew, to test and establish these therapies. For years, with the cover of western patent laws, drug companies priced medicines out of their reach. By 2000, when India’s Cipla Pharmaceuticals defied these patents to produce generic Aids drugs that countries in the global south could afford to purchase for their citizens, my uncle was long dead.
The WHO’s declaration that Africa won’t be a testing ground for coronavirus vaccines ultimately overlooks a much bigger problem. What we really need is assurance that Africa will get any vaccine or treatment at the same time as any other region; and on terms which mean we can actually afford it.
Médecins Sans Frontières has stated that governments must “prepare to suspend and override patents”. Warning that companies might try to “profiteer” from Covid-19, Márcio da Fonseca, an MSF infectious disease adviser, has urged governments to “set the wheels in motion to override [patent] monopolies, so they can ensure the supply of affordable drugs and save more lives”.
Rather than simply banning clinical trials in Africa, and excluding the continent from research, this is the solution that would have saved my uncle’s life.
• Lydia Namubiru, a Ugandan feminist and journalist, is the Africa editor for 50.50, a section of openDemocracy
• This piece was co-published by openDemocracy, and the fee was donated to Children of the Sun Foundation (CoSF), serving LGBTI Ugandans living with HIV/Aids. CoSF was recently raided by police, but you can donate through The Taala Foundation; they will transfer the donations once CoSF’s team is out of jail
