Ethics of clinical trials in Africa with a late uncle

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In the year when I was 11, my uncle, Josiah Sesanga, was admitted to the largest Murago hospital in Uganda with meningitis. HIV positive in 1994. Between him and certain deaths, there was a post-war Uganda tattered medical system. No one was new to his prognosis. The end of his life was at most a few months ahead.

treatment of HIV / AIDS Although present in other parts of the world, it was very limited in Uganda and was primarily targeted to patients who were eligible for and agreed to clinical trials. For a particular opportunistic infection of my uncle, cryptococcal meningitis, there was a drug called fluconazole. But he didn’t know it, couldn’t provide it, and even among those patients who received it, only 12% survived more than 6 months.

Then the day after his admission, my aunt, his sister “people from some American projects” remembered it and came to them with a ton of paperwork. The “project” was a clinical trial aimed at testing more effective combination therapies. “There were about three pages of possible side effects of the drug, and I was warned that I would need to continue taking the drug even when the project was finished,” she recalls. “But for most of us, our answer at that time was yes. We were hopeless. Something to stop that pain. “Cryptococcus meningitis causes a very severe headache. For my uncle, a headache literally forced him out of his mind. He often had to be physically restrained.

At trial, he received a combination of the two drugs, which gave him the so-called Lazarus effect. In less than two weeks he was discharged from hospital treatment. In the following months, he earned a college degree, became a school inspector, and regularly checked in as a researcher’s outpatient. These visits were often accompanied by painful diagnostic lumbar punctures to track his recovery.

However, clinical trials provided only a few months of maintenance therapy beyond the initial period of the study. Then he was told to start paying for treatment. A week’s worth of tablets was more expensive than a month’s medication. He quietly stopped treatment and stopped visiting the hospital. About a year later, a researcher came to find him among his relatives. She begged them to bring him back to treatment at family expense. His two sisters considered buying him 2 tablets per week (the proper dosage is 14 tablets). Two more years later he became ill. About three months later, he died in a disastrous way inaccessible to all AIDS patients. Antiretroviral therapy did.

My family is proud that my uncle contributed to the development of a combination therapy that restored hope and dignity to so many AIDS patients worldwide. It is still heartbreaking that he died because the same treatment was not available. Such clinical trials have maintained at least a long history of racism in humankind by accepting African subjects for studies where the beneficiary is someone other than them-at least catastrophically long.

Recently, Two French doctors propose to carry out coronavirus vaccine trial in AfricaMany Africans Reacted angry on social media, Call them racists. Even the director of the World Health Organization (WHO) Tedros Adhanom Ghebreyesus“ Africa can’t be a test site for vaccines and promises not to do so, ” one of the two doctors in France, explaining the doctor’s comment as a hangover from “colonial spirit” I apologized for his statement. Given the painful personal experience of my family, I understand quick anger.

But Africa, as it has happened in the AIDS pandemic, will become a testing ground for several coronavirus therapies, vaccines and / or epidemics. For example, clinical trial partnerships between Europe and developing countries are already Call for research proposal on Covid-19 in Africa for € 4.75 million. And that’s really good. Nevertheless, the painful history of racism, Excluding continents from ongoing pandemic studies You will be curious.

Clinical trials can be conducted ethically, and many African countries and institutions have ethical review boards in place to monitor and conduct protocols for human studies. An injustice that is difficult to overcome is how geopolitical powers, through patent law, unbalance access to distribution rights to drugs resulting from successful clinical trials.

In 1996, the US Food and Drug Administration began approving strong combination therapies that came out of a study in which my uncle was involved. It was a turning point moment when US activists, many of whom were gay men left behind, gave a lot. But it wasn’t just for them. Patients in developing countries also gave their blood, spinal fluid, and muscle to develop these therapies. Instead, with the cover of Western patent law, Western drug companies have priced drugs out of their reach for years. Even the relatively few patients who were direct subjects, like my uncle, died without the treatment they knew existed.

By 2000, my uncle had long died when India’s Cipla Pharmaceuticals challenged a patent to produce a generic AIDS drug that countries in the Global South could pay to the public.

“Everything was new to us,” recalls her aunt. “We had no idea what we had, or what we had as patients or caregivers.”

The WHO Director’s declaration that Africa will not be a test site is confusing (because research is already sought) and overlooks a much larger problem. What we really need is a guarantee that Africans will be vaccinated and treated at the same time as other regions.

Medicine Saint Frontier (MSF) Government urged to prepare to suspend and invalidate patentsWas held by companies that may seek to benefit from the Covid-19 pandemic. MSF quoted Dr Marcio da Fonseca, an infectious disease advisor, in a statement on March 27. Save more lives. “

It should have saved his uncle’s life, rather than a simple ban on clinical trials in Africa.

Lydia Namubiru is an African editor at the Open Democracy.

This article was published in collaboration with Open Democracy. Appeared in Continent, New weekly Email and parents Publications summarizing the best news about Africa. To download a free copy, click here.