(The Root) — World AIDS Day is approaching, and it's time, once again, for an accounting. In the roughly 30 years since the disease was recognized, more than 25 million (pdf) have died from it. An estimated 34 million (pdf) are living with it; 2.5 million new infections are recorded each year.
There has been progress. As anti-retroviral medications become more widely available, more of those infected live longer. The yearly rate of new infections has declined.
Much of the research behind those successes takes place in sub-Saharan Africa, where 69 percent of those living with HIV reside. Few people know that many of President Barack Obama's Kenyan relations and hundreds of thousands of their neighbors in the Nyanza Province of western Kenya play a pivotal role in this research, in partnership with the U.S. Centers for Disease Control and Prevention.
Two Nations, One Fight
For 33 years the CDC, the government agency that warns Americans about flu epidemics and disease outbreaks, has had an outpost in Nyanza. It was founded in 1979 as a small malaria-research station with the Kenya Medical Research Institute. After the AIDS epidemic emerged as a major problem in the 1980s, CDC/KEMRI broadened its mission to include AIDS and other diseases.
In 2003 the George W. Bush administration and a bipartisan Congress created the President's Emergency Program for AIDS Relief and the President's Malaria Initiative, giving the U.S. a leading global role in the fight against AIDS and malaria. The massive U.S. foreign aid machinery started humming, and billions of dollars began to pour rapidly into Africa for research, treatment and prevention. In 2009 President Obama announced the Global Health Initiative as a follow-up to PEPFAR and PMI. All told, the U.S. has committed $63 billion to this effort through 2017 (pdf).
Today the CDC's largest overseas research station is in Nyanza. After South Africa, Kenya is the biggest recipient of PEPFAR and GHI funds, receiving more than $500 million a year, much of it funneled through CDC/KEMRI. The Nyanza facility employs more than 1,000 people, most of them Kenyan. Its list of collaborators reads like a who's who in infectious-disease research and includes the National Institutes of Health, USAID, the Walter Reed Army Institute of Research, the Gates Foundation, Merck Pharmaceuticals, GlaxoSmithKline and the Global Fund, plus dozens of universities and medical schools around the world.
Understanding the Challenge
There is no denying that PEPFAR and now GHI have altered the course of the HIV/AIDS epidemic in Africa, and that the CDC's muscular presence in Nyanza has benefited local communities. Efforts like the one in Nyanza and similar foreign aid efforts, though, frequently have a hidden difficulty.
The relationship between donor and grantee is often — let's speak frankly — an uncomfortable one, reflecting the imbalance of power. The philanthropic entity derives satisfaction from giving but wants some acknowledgment of that gift. The recipient feels obliged to put on an impressive show of gratitude, mindful that it relies on the approval and goodwill of its more powerful partner.
On the other side are the people of Nyanza — poor, malnourished and in ill health. Almost two-thirds of this mostly agricultural community lives below the Kenyan national poverty line of around 60 cents a day. Nyanza's HIV/AIDS rate, at 14.9 percent, is more than double the national average. In one study, among men between 25 and 40 years old, it was as high as 40 percent; among women ages 20 to 30, the rate was up to 36 percent.
Young and old suffer from an array of diseases that include malaria, diarrhea, pneumonia, tuberculosis, anemia, jaundice, schistosomiasis, intestinal worms and chiggers. Hunger is so pervasive that thousands of parents — who, according to local Luo tribal traditions, name their children for the season in which they are born — call their children Akech, after the kech, or "hunger season."
So what do Nyanzans bring to the table to balance out this relationship?
They offer their life stories.
For 12 years, hundreds of thousands of Nyanzans — including many of President Obama's Kenyan relatives, among them his 90-year-old step-grandmother, Sarah Obama — have voluntarily participated in one of the world's largest and most comprehensive health and demographic surveys. At last count, 225,061 inhabitants in 385 villages in Nyanza — including Nyangoma Kogelo, the birthplace of President Obama's father — are enrolled in the study. Known by its distinctly unglamorous title — the Health and Demographic Surveillance System, or HDSS — it is an extraordinarily detailed chronicle of daily life in Nyanza.
One of the problems of AIDS research in Africa is the lack of reliable data. In Nyanza, says Dr. Kayla Laserson, a tuberculosis specialist who has led the CDC's HDSS effort for the past six years, "by following this big population, just letting life happen and reading it, we can measure the impact of various interventions. It's a really valuable resource."
Local interviewers visit each registered family every four months, asking up to 150 questions each time. They are interested in the minute details of daily life. Does the family have a radio? A bicycle? A cow? Where do they get their water? Are the children in school? Has anyone been ill? The birth of a child, the loss of a parent, a marriage celebration, those who leave for Nairobi to seek a better life and those who return in disappointment — all is recorded in the shorthand of the HDSS.
Year in, year out, the tens of millions of data points that chronicle the ebb and flow of life in Nyanza form a platform for groundbreaking medical research that influences global public health policy. The HDSS has served as the basis for clinical trials to produce vaccines and drugs for diseases such as rotavirus, malaria, meningitis and tuberculosis, as well as for the development of methods to detect emerging global diseases like the H1N1 flu, reduce waterborne illnesses and address neglected tropical diseases.
On the AIDS front, by closely tracking Nyanza's population, scientists have been able to develop better HIV/AIDS testing and prevention, as well as anti-retroviral drug regimens to reduce the disease's spread. One study showed that early ARV drug therapy for discordant couples (in which one partner is HIV-positive and the other negative) could reduce the virus's transmission by an astonishing 96 percent. Another showed that triple-ARV therapy is much more effective at reducing mother-to-child transmission than a single-drug ARV regimen.
The World Health Organization now recommends that new drug protocol. "Even if you have a big, fancy clinical trial," says Laserson, "everyone wants to know, does it work in a real-life situation? … [The HDSS] provides trends and long-term data."
If such a large and detailed survey were to take place in the U.S., it might prompt concerns about privacy. In Nyanza, it's the opposite. There, it means someone is looking out for them.
When yet another small child slips into a coma and succumbs to malaria, the HDSS takes note. In a part of the world where there are few doctors, world-famous clinicians come to the local Siaya District Hospital to do research and also to see patients. Local hospitals and clinics have received substantial upgrades. Dispensaries are monitored for the counterfeit drugs that flood so many African communities.
Several community advisory boards — made up of teachers, church leaders and other prominent local figures — review protocols, discuss clinical studies and give CDC/KEMRI advice on its work. The only ones paid for their participation are a small coterie of "village reporters," usually female elders chosen by their village. They receive a dollar every time they report a birth or death in their community. In 12 years, less than 1 percent of those enrolled have chosen to leave the HDSS.
Through their long years of intimacy, the HDSS and Nyanza appear to have grown comfortable with each other. Like an old married couple, all pretense gone, they sit together and talk about the family. If an interviewer enters a house where a child is sick, he will bring him to a clinic. Mama Sarah, President Obama's step-grandmother and one of the survey participants, gives updates on her arthritic knee, one of her few complaints in old age.
In Nyanza, they give as much as they get. All in all, it's a marriage of equals.
Louise Lief is the former deputy director of the International Reporting Project.