A report from AIDS-ravaged Africa
Theresa is going to die. She huddles under a thin blanket in a bed on Ward One of the Moi Teaching and Referral Hospital, a bed she must share with another woman whose feet lay by Theresa’s head. She looks up vacantly at the doctors and medical students surrounding her. Theresa is so thin — “wasted” is the term the Kenyan medical student uses when reading aloud from his examination notes — that her eyes seem to bulge out from above her sunken cheeks. -Theresa lay in her bed, which she had to share with another patient, at the Moi Teaching and Referral Hospital in Eldoret, Kenya.- The medical student reads on. Theresa has had a persistent cough for four years now. Her breathing is rapid but shallow. Her mouth and throat are choked with a white fungus that makes it appear Theresa has been chewing cotton. It is oral thrush, an indicator of late-stage HIV. Theresa’s breathing is so labored because she also has PCP (pneumocystis carinii pneumonia) one of the most common and serious infections for people with HIV.
The medical student closes by reciting the social history. Theresa is a 28-year-old widow with three children at home, the youngest just 3 years old. The student finishes and looks up at Dr. Joe Mamlin, a professor emeritus at the Indiana University School of Medicine, who is leading today’s hospital rounds. Mamlin shakes his head and looks past the students to where I stand with my notebook. “Unfortunately,” he says to me, “that is your introduction to Kenya.”
A Kenyan medical student asks Theresa in Swahili if I can take her photograph. She nods slightly and stares into the lens. Mamlin then leads the group on to the next patient. Theresa has plenty of company here. Women lay two or even three to a bed, flies alighting on their heads. We step around a woman curled up on the bare floor, clutching herself and moaning. We see Elizabeth, who has arms the circumference of a broom handle. (Most Kenyans in the Eldoret area have Christian first names and more traditional last names. I changed the names of all the hospital patients for this article.) Janet is in a coma, Beatrice has skin lesions. Alice hasn’t been tested yet, but shows signs of late-stage HIV and lost her husband to the disease a few years ago. I lean over to read her hospital chart and get bumped in my hip. I turn to see an attendant trying to maneuver a rickety aluminum cart past me. On the cart is a small body under a stained blanket. Someone beat Theresa to it.
I traveled to this Eldoret, Kenya, hospital as the guest of the Indiana University School of Medicine, which for 14 years has worked with the hospital’s academic partner, Moi University College of Health Sciences. Since the IU-Moi program was first profiled in NUVO in May of 2001, the AIDS pandemic has passed the bubonic plague to become the worst health crisis in human history. The numbers are staggering: In sub-Saharan Africa, there are more than 30 million people infected with HIV, with as many as 6,000 people dying from the disease every day. In the area served by the hospital where Theresa lay, one in six pregnant mothers test positive for the virus.
In the decade and a half of IU-Moi collaboration, the hospital’s death rate has increased tenfold. Mamlin, the team leader of the IU contingent in Kenya, finishes the hospital rounds, his shoulders slumped in frustration. He talks about how the virus feeds on the traditional problems of this developing country, where nearly half of adults are unemployed, government corruption stunts the growth of the health care system and sexually roaming husbands too often bring the virus home to their wives.
But, culture aside, the reason Theresa is dying is because she is a poor woman living in a poor country. If she were Mamlin’s patient at Wishard Hospital, where he worked for three decades, or a patient in any other Western medical system, Theresa would be as healthy as the young medical students examining her. But antiretroviral drugs, the medicine that makes HIV in the Western world as treatable as diabetes, is too expensive for Theresa or the other women dying all around her. “It is easy to sit in a conference room and say it is not wise to provide treatment here,” Mamlin says. “But it’s a lot harder to be here and look into these people’s eyes and not be doing anything.”
Rachel is going to live
For Rachel Njeri, Mamlin and IU were able to do something. Rachel was once as sick as Theresa, her AIDS-ravaged body unable to fight off an infection that had filled her pericardium, the thin sac around her heart, with pus. Too weak to care for her children, Rachel had gone home to her parents, who threw her out. She had friends in Eldoret who promised to give her a decent burial, so Rachel came back to the city to die. “Every morning I told my children that if I don’t wake up, you have to care for yourself,” she says.
When Rachel shrunk to less than 80 pounds, her daughter brought her to the same dismal hospital ward where Theresa now lays. “I was so small, if you saw me on the bed, you would have thought I was a child,” Rachel says. But it was on that likely deathbed that Rachel learned she would be one of the fortunate few who qualify for antiretroviral therapy through the IU-Moi program. The drugs worked their legendary “Lazarus” effect on her, helping her gain weight and strength.
Now fully healthy, Rachel works as a research assistant, surveying other HIV/AIDS patients for IU and Moi doctors studying the disease. Those physicians now have nearly 1,200 patients like Rachel, about half of whom are on a supervised antiretroviral regimen. Some receive their treatment through private donations, and a drop in the price to 1,900 Kenyan shillings (about $27 U.S.) per month has allowed a few patients with better-than-average wages to pay for the drugs themselves. Most receive the medicine through a program designed to stop mother-to-child HIV transmission.
IU-Moi was chosen by the MTCT (mother-to-child-transmission) Plus program as one of 12 international demonstration sites to offer the treatment to pregnant women and any infected member of their families. Babies born to untreated HIV-positive mothers have a 50 percent chance of contracting the virus. The IU-Moi project is aggressively treating these mothers with antiretrovirals in the final trimester of their pregnancies, with the hopes of reducing the transmission rate to 5 percent, comparable to the odds of transmission from HIV-positive mothers in the U.S.
“There is more HIV in the city of Eldoret than we can possibly treat now,” Mamlin concedes. “But if we can offer this treatment to enough pregnant mothers, we can virtually eliminate pediatric AIDS in this community.”
For several years now, global AIDS activists, world governments and funders have engaged in a grim debate about priorities. The question is whether it is more important to focus on preventing HIV in the developing world or to treat the millions otherwise destined to die from the disease. But Mamlin and the other IU-Moi doctors refuse to accept an either-or position in the debate, insisting that treatment and prevention are natural partners.
Their case in point is the program’s first-ever antiretrovirals patient, former medical student Daniel Ochieng, who now leads an IU-Moi outreach effort. Ochieng and many other Kenyans believe the HIV/AIDS stigma that has blocked widespread testing and safe sex practices is less of a cultural phenomenon than it is a predictable reaction to the prevailing African view that the disease is the equivalent of a death sentence. In other words, treatment is prevention.
“Knowing there is treatment for the disease makes people take the test,” Ochieng says. So Ochieng and colleagues like Rose Birgen, an HIV survivor who lost her husband and infant child to the disease, lead community meetings and advocate condom use and responsible sexual practices. At those meetings, the speakers’ most compelling argument is their own obvious good health. “We show ourselves to the community that we are HIV-positive yet we are living, and we reduce the stigma,” Birgen says. “When we go to barazzas [community meetings] today, they go to be tested tomorrow.”
Now, more than 80 percent of new mothers served at the Moi Hospital are agreeing to be tested for HIV, and IU surveys show that many of the culture’s deadly HIV myths are fading away. Over three-quarters of Kenyans surveyed knew that someone without symptoms can transmit HIV, and almost all knew there was no cure for the disease. Less than 5 percent bought into the dangerous fallacies that HIV has a supernatural cause or can be cured by sex with a virgin.
IU’s greatest moment
Eldoret is only 40 miles from the equator, but at 7,000 feet above sea level, it is still chilly on the June morning when 20 Kenyan doctors, nurses and outreach workers file into Moi University College of Health Sciences. Along with four IU doctors, they wedge themselves into a small concrete-walled room. Dr. Sylvester Kimaiyo, who like most of the other physicians here has received some of his training in Indiana, calls the meeting to order.
Mid-way through the agenda, Kimaiyo calls on a young woman who works in the HIV counseling unit. The room grows quiet while she delivers a crisp Swahili-accented report on the number of persons tested and treated at the different program sites. When she is finished, everyone bursts into applause. With over a thousand patients already and plans to treat up to 9,000 more, the program is Kenya’s largest provider of HIV prevention and treatment services and one of the most comprehensive in the developing world.
Later in the week, the Indiana and Kenyan physicians meet again, this time to go over the dozens of research papers they are preparing to document their HIV control and treatment efforts. “You all are doing something here the world needs to know about,” says Dr. Bill Tierney, IU School of Medicine professor and chief of the school’s division of General Internal Medicine and Geriatrics. “I’m involved in a lot of programs, and none are as well-organized as this one.”
The unique nature of the organization is the cross-cultural cooperation between the Indiana and Kenyan faculties. Together, they have created a program called AMPATH (Academic Model for the Prevention and Treatment of HIV/AIDS), which leverages Indiana expertise and resources to train and empower dozens of Kenyan doctors, medical professionals and even village birth attendants in the fight against HIV/AIDS.
“The IU-Moi model seeks to train Kenyan health care workers to be equipped to deal with the HIV/AIDS epidemic, which is critical if there is going to be any headway made,” says Dr. Marty Markowitz, clinical director of the Aaron Diamond AIDS Research Center. “You cannot fight a war long distance, you have to fight this war on the ground. And it can best be done by Kenyans, with the assistance of those more experienced.”
It is hard to overstate the importance of this successful collaboration between African and U.S. doctors, not just for the Kenyans treated by AMPATH, but for the 36 million people in the developing world who have HIV/AIDS. The global significance of the IU-Moi program derives from the uniquely thorny challenge presented by treating HIV in the developing world.
Even if antiretroviral drugs’ price drops all the way to zero, this is not the kind of emergency relief you can hand out like sacks of rice from the back of a U.N. truck. HIV-positive patients have to be educated and supported in their drug-taking regimen, and there has to be a lifetime supply. Poor compliance with the regimen can lead to a brand of HIV that is resistant to the triple-drug cocktail and responsive only to prohibitively expensive alternative drug combinations.
As bad as the HIV/AIDS situation in sub-Saharan Africa is, sloppy treatment efforts could make it even worse. Fear of this potentially catastrophic result, as much as a lack of funds, forms one of the biggest barriers keeping life-saving drugs out of the developing world. So if the pandemic is to be halted, there first needs to be a protocol for effective and affordable HIV care in countries that have precious little in the way of traditional health resources.
When the IU-Moi team treats patients who wrap their space-age medication in scarves and carry them down muddy red paths to thatch-roofed huts, these doctors are quite self-consciously creating a model for treatment that can be applied to the entire developing world. That model is so critical to the global struggle against HIV/AIDS that the IU-Moi program has attracted funding from the National Institute for Health, USAID, the Bill and Melinda Gates Foundation and dozens of other foundations, agencies and private donors. Even during my short visit, a half-million dollar grant from a Canadian foundation was confirmed, allowing antiretroviral drugs to be provided to more patients.
“There is a growing sense that devoting a lot of resources to treatment is necessary, but there is not a lot out there yet in how to do it responsibly,” says Dr. Tim Evans, director of health equity for the Rockefeller Foundation. “That is why the IU-Moi model is so important. It is the best practice model, which importantly is not a Cadillac that no one can afford. It is a Toyota that is a good quality model of care that can be replicated in a lot of settings with constrained resources. “This is a program that is reversing the tide of skepticism regarding providing treatment,” Evans says. “Their success is very, very timely.” This success may be Indiana University’s greatest moment. It is hard to imagine anything, even a Nobel Prize or, dare I say it, a game-saving jump shot, out-ranking professors from our state school coming through in the clutch to halt the worst pandemic in recorded history.
“The people working on this program are public health heroes,” Evans says. “They are doing things that many people thought could never be done, and it is going to have a huge multiplier effect.”
The fan favorite of this IU team is Mamlin, a charismatic white-haired figure who helped develop Wishard’s successful community health center system before “retiring” to Kenya with his wife Sarah Ellen. Every autumn, Mamlin makes a return trip to Indianapolis, standing up at church services and funder meetings to share a harrowing eye-witness account of death on the African front lines. A rare physician whose bedside manner is matched by his comfort in front of a crowd, Mamlin fills up reporters’ notebooks with quotable pronouncements like “This is a physician’s worst nightmare” and “We need to use every moment to raise holy hell.”
The 67-year-old Mamlin can be so compelling that Indianapolis-based Dr. Bob Einterz, 20 years his junior, is sometimes asked how exactly he is connected to the program and whether he has ever been to Africa himself. Einterz laughs at this, but in fact he is the director of the program and one of its founders, as well as an assistant dean of the IU School of Medicine and the medical director of Wishard’s Westside community health center. He has been to Kenya some 30 times, thank you, including a year-long stint with his family setting up the program in 1990 and 1991.
Another key figure is Tierney, who leads IU’s research efforts in Kenya and is successfully building a computerized medical record system designed to lead to a network of HIV clinics throughout Africa. Together with their Kenyan counterparts and several other IU medical school faculty members, these physicians have built a program that now includes elements of HIV prevention, outreach, treatment and nutrition, the latter through a 10-acre farm feeding malnourished patients and modeling sustainable agriculture practices. Later this year, they expect to break ground on a new HIV treatment center in Eldoret.
When Dr. Kimaiyo attends conferences in Europe and Africa on HIV treatment, he finds himself inundated with inquiries about how IU-Moi has created and sustained such a comprehensive program. “One of the most remarkable things about the IU-Moi program is that they managed to get substantial numbers of patients on much-needed treatment well before factors like increased donor interest and reduced drug prices made decent treatment a reality in other settings in Kenya,” says Dr. Barbara Marston of the Centers for Disease Control’s Global AIDS Program.
“As a result, they have capable care providers, well-established systems and the necessary buy-in from both the hospital administration and the community — and can therefore really ramp up in the face of these changes. Other programs are just now struggling to improve community awareness and provide the necessary training to health care personnel.”
“You can do this business out here”
The young man walks into the closet-sized room and pulls from a plastic bag three cardboard boxes, worn at the edges and dusted red by the region’s clay soil. Lillian Boit, the clinical officer here in the Mosoriot Rural Health Center, 25 kilometers west of Eldoret, opens each box and counts the pills inside. The young man is in perfect compliance with that month’s triple therapy drug regimen. He has HIV, and he is healthy.
For five hours straight, Mamlin sits next to Boit as patients come in one after another and Boit translates their Swahili or Nandi to English. In this open-air clinic in the middle of rural Africa, the IU-Moi team eloquently refutes the most stubborn excuses for not treating HIV in developing countries. First told their services were not needed in this community where no one uttered the term HIV aloud, the IU doctors kept coming.
For months, they treated other diseases and slowly built trust and relationships with the local residents. Now, twice a week, dozens of patients openly acknowledge their HIV status by lining up to see Mamlin. Community groups sing songs about HIV awareness and a large sign advertising HIV testing is painted on the outside wall of the clinic.
The IU-Moi outreach in Mosoriot brings 21st century health practices to what is in many respects still a 19th century culture. A sophisticated computer record-keeping system has been installed, and traditional birth attendants (TBAs) are taught how to administer the HIV-blocking drug nevirapine to women giving birth in remote huts. “Training the TBAs to provide nevirapine is a great example of how the IU-Moi folks have been incredibly innovative,” says Rockefeller Foundation’s Tim Evans. “Instead of reaching only the small percentage of women who come into the clinic to give birth, this outreach means they are getting to the majority of area women who give birth at home. It is common sense, it’s good problem solving and it’s having a huge effect.”
The Mosoriot program is also proving that rural Kenyans are quite able to comply with strict antiretroviral therapy, once thought to be unsuited to people living in a primitive setting. Mamlin gestures to where Boit is explaining the requirements of the therapy to a pregnant woman whose husband, a proud Nandi, readily agrees to get tested. “People say you can’t do this in a village in Africa, but just look how intently they are paying attention to Lillian,” he says. “This is life and death, and they know it. There is no doubt you can do this business out here.”
But if there is a glow of optimism from the sight of the infected couple qualifying for free medicine, it fades away as a sequence of female patients come in, all showing signs that their bodies are breaking down from the virus. These women do not fit into any of the narrow categories where IU has funding to provide antiretrovirals. Mamlin can only prescribe some antibiotics that may help temporarily fight off some of the secondary infections.
Today, Mamlin and Boit see more than 30 patients. Just as they are ready to leave, a village man brings in his 42-year-old sister Evelyne, who is too weak to walk. Her heart rate is 161 sitting in a wheelchair, and she is fighting to get oxygen into her lungs. Evelyne is bundled up as if it is freezing outside, but her sleeves ride up to reveal the thinnest arms I have ever seen. I take a photo, and Mamlin directs her brother to bring her to the hospital. After they leave, Mamlin acknowledges Evelyne has almost zero chance of surviving the week. “For the 95 percent of patients we see who are not pregnant women, there is nothing for them here,” he says. “Sometimes this is just hell.” • • •
On my last day in Africa, I follow Mamlin back to the hospital. I check for Evelyne from Mosoriot, but she never made it here. Theresa is still alive. She lays on her side with her eyes open, but she doesn’t seem to know the doctors are there. When the nurse tried to put an IV in her arm for fluids last night, Theresa somehow found the strength to pull it out. “I think she’s tired of this battle,” Mamlin says.
He walks over to the next bed where Naomi, a mother of four, has just tested HIV-positive. Naomi’s disease is in its early stages, so Mamlin thinks antibiotics will clear up her current infections and buy her a few months of health. She’ll need that time for IU-Moi to continue to beg for every nickel they can get and for Africa to wait for antiretrovirals to be made more widely available.
Naomi does have some reason for hope. Congress recently passed — but has not yet funded — President Bush’s $15 billion global AIDS initiative (to be headed by Indianapolis’ Randall Tobias, former CEO of Eli Lilly), and the Kenyan government last month announced it will receive $36 million from the U.N.’s Global Fund to Fight AIDS, Tuberculosis and Malaria.
Mamlin learns Naomi is a schoolteacher and understands English. He leans over her bed and speaks softly. “You know you have tested positive for HIV?” he asks. Naomi nods, her eyes on the floor. “You have to be a fighter now,” he says. “It’s not like it used to be. There’s new medicine we have.” He puts his hand on her thin shoulder. “Hang in there with me, and we may be able to help you.”
Theresa died the day after Fran Quigley left Africa.
Contributions to the IU-Kenya program can be made to “IU Foundation — Kenya Program” and sent to the IU-Kenya Program, 1001 W. 10th St., M200 Indianapolis, IN 46202. For more information, call 630-8695.
“We have to run to save lives” If Dr. Bill Tierney is ever called upon to write one of those Reader’s Digest essays on “My Most Unforgettable Character,” he would choose Irene Kalamai. “Irene is just one of those people who makes you realize how much more you could do with your life,” says Tierney, an IU School of Medicine professor and chief of the school’s division of General Internal Medicine and Geriatrics. “She has this huge drive and immense intelligence, and she uses it for all the right causes.” Tierney admires what he calls Kalamai’s “iron fist” management of the Mosoriot Rural Health Center, where Tierney installed what is believed to be rural Africa’s first computerized medical record system. “The data just lets Irene do more of what she does best,” he says. “When she sees people waiting in line for services, she gives them a lecture about preventing HIV. Now she looks at the data and sees there is a high incidence of STDs [sexually transmitted diseases] in a certain remote area, and she immediately sends some people out there to provide education and distribute some condoms.” Kalamai’s efforts are not limited to her day job. She operates a family farm where she houses and feeds people who she describes as “those whose heads are not very stable.” She also supports various women in micro-enterprises selling herbal skin remedies and pays for some area orphans to attend high school in the city. In some ways, Kalamai may represent the vanguard for rural Kenya’s move toward a more modern society. Although her father had three wives (and 30 children), when Kalamai’s husband brought another wife home, she walked out. “I said I could not stomach,” she says. A member of the fiercely patriarchal Nandi tribe, Kalamai, a nurse, is equally fierce in her determination to empower women medical professionals and the women who serve as traditional birth attendants throughout the countryside surrounding Mosoriot. Those women and Kalamai work in partnership with the IU-Moi program that has made significant strides in fighting HIV in the Mosoriot region. “With the new drugs, we are not going to lose so many people. Widows now can be healthy and learn good farming so they do not always have to be dependent on aid,” Kalamai says. “The men are now coming to be tested, which never used to happen. I tell them not to delay doing something until the person is so sick you have to carry them in. We are not a mortuary!" “We have to move fast against this disease,” she says. Then Kalamai flashes a bright smile and pumps her arms back and forth in a pantomime that translates directly from Nandi to Hoosier. “We all have to run to save lives, even at my age!” —FQ