However, when doctor and clinical researcher Boghuma Kabisen Titanji met Celine five years later, she had gone without antiretrovirals for a year and a half. She had little understanding of what the clinical trial she had been a part of was studying. Meanwhile, she couldn’t afford a bus ticket to the local health clinic, and was too sick to walk there.
Celine’s case hammered home an important question for Titanji: What happens to research subjects after the research is over?
As Titanji explain in today’s talk, filmed at TEDxGoodenoughCollege, HIV researchers have a wide variety of reasons for choosing to do research in sub-Saharan Africa rather than in their countries of origin. The first reason: because 70% of the approximately 30 million people with the disease live in the region. But there are other factors, too, less high-minded ones: because review of clinical research is far less stringent there, because the poor populations there are likely to sign on for any offer of medical assistance, and because there is a far lower risk of litigation there. Whatever the reason for doing research in sub-Saharan Africa, Titanji wants to make that researchers recruit their test subjects and take care of them with proper respect.
“I do not stand here today to suggest in any way that conducting HIV clinical trials in developing countries is bad. On the contrary, clinical trials are extremely useful tools and are much needed … However the inequalities that exist between richer countries and developing countries in terms of funding pose a real risk for exploitation,” Titanji says. “How do we ensure that in the search for the cure we do not take an unfair advantage of those who are already most affected by the pandemic?”
To hear the four areas that Titanji suggests researchers think deeply about before conducting studies, watch her talk. And here, 9 more powerful talks with ideas for rethinking — and hopefully stopping — the spread of HIV and AIDS.Emily Oster flips our thinking on AIDS in Africa
The traditional thinking goes: encourage people to abstain and use condoms, and AIDS will disappear. But in this talk from TED2007, economist Emily Oster challenges this idea, pointing out that this logic only holds in areas where people feel that they are likely to lead a long, healthy life. Oster gives a surprising answer for how to actually change behavior and roll back new HIV infections — by dedicating resources to solving the other health problems that lead to low life expectancy in Africa. Shereen El-Feki: HIV — how to fight an epidemic of bad laws
At the TEDxSummit in Doha, TED Fellow Shereen El-Feki tells the story of a man who was deported … for being HIV positive. Apparently, 50 countries around the world still have laws that allow for this. In this impassioned, talk El-Feki brings attention to the epidemic of bad HIV laws, which effectively criminalize having the disease and draw it underground. Mitchell Besser: Mothers helping mothers fight HIV
A disproportionate number of people living with HIV are in sub-Saharan Africa and, yet, doctors are scarcer here than anywhere else in the world. At TEDGlobal 2010, Mitchell Besser shares an initiative to train HIV-positive mothers in the area to support and take care of each other, as well as to educate their communities about the disease. Elizabeth Pisani: Sex, drugs and HIV — let’s get rational
Self-proclaimed “public-health nerd” Elizabeth Pisani knows that there are two things that make people act irrationally: sex and addiction. At TED2010, she shares what’s she learned working with at-risk populations — that counter-intuitive measures could dramatically prevent new cases of HIV. Hans Rosling on HIV: New facts and stunning data visuals
Data master Hans Rosling says that HIV is one of the most misunderstood diseases out there. In this talk from TED2009, Hans Rosling “plays” the HIV epidemic in a moving graph, which gives a new understanding of what can be done to halt deaths from the disease. The key: stopping new transmissions. Seth Berkley: HIV and flu — the vaccine strategy
When will there be a vaccine for HIV? At TED2010, epidemiologist Seth Berkley shares that we are getting closer because of leaps and bounds advances in the understanding of how vaccines work. Watch for a look at the mechanics of a potential HIV vaccine. Kristen Ashburn’s photos of AIDS
This talk shows the human toll of the AIDS epidemic in Zimbabwe. At TED2003, documentary photographer Kristen Ashburn shows her heartbreaking and beautiful images of people — many of them women and children — living their lives with AIDS. Amy Lockwood: Selling condoms in the Congo
HIV is a huge problem in the Democratic Republic of the Congo. Aid organizations have flooded the country with condoms — but only three percent of people are using them. At TEDGlobal 2011, former marketer Amy Lockwood points out that the messages on the packaging for these condoms stresses fidelity, health and prudence — not exactly the things on people’s minds when they’re thinking about whether to use a condom. Annie Lennox: Why I am an HIV/AIDS activist
Best known for her music, at TEDGlobal 2010, Annie Lennox shares what inspired her to devote her life to raising money and awareness to combat HIV and AIDS through her campaign, SING. Spoiler alert: it was the words of Nelson Mandela.