I was in Africa on World AIDS Day (December 1) 2005, on a media tour paid for by Bristol-Myers Squibb (BMS). Bristol-Myers, the maker of several HIV drugs, was showcasing its $150 million program in Africa, Secure the Future. We traveled to three countries in five days, beginning and ending in Johannesburg, South Africa.
Having traveled to South Africa in 2000 for the International AIDS Conference in Durban, I found that today there is less stigma. With stigma diminished, more people with HIV can be reached and prevention efforts can be strengthened.
There is also more treatment available. Medical providers and organizations around the world have converged in Africa to carry out special programs and provide medication (see also page 27). Treatment is key to turning the epidemic around. One young man said, “I don’t know why they say there’s no cure—I feel cured.”
Among the programs funded by Secure the Future are five of six children’s hospitals opened in Africa by Houston’s Baylor College of Medicine. The first one opened on the continent is in Botswana.
A special doctor
Dr. Mark W. Kline is head of infectious disease treatment at Baylor Children’s Hospital. I interviewed him years ago for an article on treatment of pediatric AIDS, and he sent me a copy of a booklet he had written for parents and guardians, summarizing in simple language the U.S. guidelines for treating HIV in children. At that time, I knew he was a special doctor, going above and beyond the requirements of his job. Later he established a children’s hospital in Romania and another one in Malawi, treating orphans living with AIDS. After that came the six hospitals—so far—throughout sub-Saharan Africa.
The first one of these was established after he met Dr. Gabriel M. Anabwani, of Botswana, at a training. They sat next to each other and hit it off immediately. They shared a mutual passion for stopping AIDS in children. Anabwani visited the Baylor hospital in Hous ton, then he asked, “Okay, where do we go from here?” The Botswana-Baylor Children’s Clinical Center of Excellence hospital opened in the capital city of Gaborone in June 2003, with Anabwani as its medical director. According to Kline, it is the first institution of its kind on the continent. Even before the hospital could be built, they had established a temporary clinic. It was here that, through a research study, Anabwani was able to obtain medications and start children on treatment (see “A Special Girl” on page 33).
“HIV/AIDS is extracting a heavy toll on children worldwide,” Kline told reporters. He said that 15% of infections and deaths are in children, but in sub-Saharan Africa, 40–60% of all childhood deaths are due to AIDS.
In Africa, lack of infrastructure and the departure of doctors to wealthier countries hurts the treatment of people with HIV, Kline said. As professionals leave poor countries, there are fewer pediatricians to treat children with HIV. The establishment of the Pediatric AIDS Corps through Bristol-Myers funding will help scale up antiviral therapy and monitoring. “Trained professionals will have a powerful effect on catalyzing treatment on the continent,” Kline said.
Professor Peter Traber, the president and Chief Executive Officer of Baylor College of Medicine, was also in Africa for the opening of the newest children’s hospital. “I’m asked very often why would Baylor be interested in expanding our program this way. We provide community services, and we have a global community, far beyond Houston. We feel it’s our responsibility. Texas Children’s Hospital is one of the finest in the world, and our pediatric infectious disease [care] is one of the finest in the world.”
 Traber emphasized the importance of partnership among academia, government, and industry [pharmaceutical companies] for expanding healthcare around the world.
Another special doctor
Dr. Anabwani said that there are 100,000 children known to have HIV in Botswana, but probably more because the technology to test for the virus is not available in every part of the country. Overall, HIV is the main underlying cause of hospital admission and death for both adults and children in the country.
He quoted his country’s president, Festus Mogae, who told UNAIDS in 2001, “We are threatened with extinction.”
He talked about the difficulties of treating children (their drug dosage may need to be adjusted month to month as they grow and the limited options in drugs and formulations); about a psychosocial program to support children whose therapy fails for various reasons; about the need for technology; about the “brain drain,” whereby professionals leave the country for better career opportunities and bigger salaries elsewhere.
“Lack of specialists in pediatric HIV remains a key challenge to the sustainability of the network [BIPAI Network of Centers of Excellence],” he said. “The recent initiation of a Pediatric AIDS Corps for the network to be jointly funded by Bristol-Myers Squibb and Baylor College of Medicine aims to meet this critical staff challenge.”
He talked about an adolescent program—a “teen club”—with full disclosure of status, where leadership potential is developed, where young people learn life skills and responsibility for their own health, and look at “life beyond HIV.” There’s also community outreach, to educate and help behavioral change.
The hospital has screened 4,456 children to date, and 1,551 were HIV-positive (34.8%). Of these, 1,400 are on treatment. Mortality is 9%, which he called low, and occurs mostly in the first three months of therapy (presumably when children are still ill). The hospital’s orphan program sees a “fortunately low” rate of HIV infection, 5%.
Anabwani said 85% of the hospital’s patients have a viral load under 400 within six months, calling this “remarkable even by Western standards.” He added that adherence to therapy is excellent, more than 95%. Children tolerate drugs better than adults because they have a more effective liver, he says.
At the same time, treatment is complicated by the reliance that children have on their parents and families, and if orphaned, on other relatives. Given the choice, all of the parents with HIV chose to be treated in the Center of Excellence along with their children, rather than use adult services.
This helps to improve treatment adherence for both parents and children, and to break down stigma within families. “If you can break down stigma within families, you can break down stigma within communities,” Anabwani declared.
“Advocacy for c hildren can never be overstated,” he told the reporters. “We are achieving miracles, and yet it’s totally insufficient.”
A special lab
With funding in part from BMS, the government opened the Botswana-Harvard AIDS Institute Reference Laboratory in June 2003. With a specialized lab, monitoring of patients with HIV can be carried out—viral load can be measured, T-cell counts can be followed. The work is automated, due to the number of specimens processed. The lab also has a genotyping machine to check for HIV drug resistance—one of the few resistance machines on the entire continent—and can also do HLA (human lymphocyte antigen) typing. This state-of-the-art laboratory is crucial to the treatment and research of HIV in the country.
Among other things, the scientific community needs to conduct research to show that the medicines working in other countries are also safe and effective in theirs.
“The number of specimens that come in here is phenomenal,” said Dr. Madisa Mine. “I can only pray that the staff stays motivated.” He said the laboratory measures 600 to 700 T-cell samples a day, and sometimes 900. Today all newborns born to HIV-positive mothers can be tested for the virus, when before, only those who were seen by a doctor after their birth would be tested. The staff is also looking into newer technology to keep up with an increased number of patients.
“There are new challenges with every increase in patients,” he said. For example, there’s now a need for greater storage space for blood samples. He said warehouses are needed.
Touring the lab reminded me of a photo shown by a presenter at the International AIDS Conference in Durban back in 2000. As someone who’s never worked in a lab, the photo meant very little to me. But when he showed this photo of a lab work set-up in what looked to be a regular kitchen counter setting, the audience of doctors and other healthcare professionals gasped. It was evident: advanced technology and good conditions are hard to come by in resource-poor countries.
Princess Marina hospital
The near-by Princess Marina hospital is where children were seen before the Baylor hospital was opened. Anabwani says it was inadequate for children, with only two rooms where they could be seen by their doctor.
 A group of HIV-positive women at the hospital talk to reporters. They receive HIV treatment through the Tsepho study. Their doctor, who’s from the U.S., is in the room with them. He smiles as they talk about their lives. He points out some of their triumphs that they haven’t brought up, such as being able to go back to work. I sense the pride he has in his patients, in the saving of their lives.
The women all say they experience no side effects. They also say that there is less stigma than there has been in the past.
Yet stigma remains, even as they talk about it lessening. “People now know more,” says one of the women. “Being HIV-positive does not mean that someone has done something wrong.”
The next day, at a women’s shelter for survivors of domestic violence in Gaborone, another woman made a similar comment: “We are not prostitutes,” she said forcefully. This is what she wanted the world to know. Yet UNAIDS reported years ago that the number one risk for HIV infection for women around the world was to be married. Husbands were responsible for the vast majority of infections among women.
Know Your Status
On World AIDS Day, Baylor held a ribbon cutting ceremony as it opened its fourth pediatric hospital in Africa, in Maseru, Lesotho, a small kingdom completely contained in the middle of another country, South Africa. (Meanwhile, another children’s hospital opened in Swaziland, also with BMS funding. Two other hospitals are under construction.)
“By focusing on children, we’re making it clear that we will not allow AIDS to rob us of our future,” says Kline. “This center is the most wonderful salve for a broken heart—you know that AIDS in Africa breaks your heart.”
Kline said he was glad that the children’s hospital is close to the Senkatana Center, where adults living with HIV/AIDS receive treatment and support, including support groups.
At the center, a counselor said that counseling makes up the first visit, before people are put on treatment, and that they are disappointed not to get drugs right away. Over time, more patients are arriving for care. “People are coming out more and stigma is less of a problem,” she said. “It used to be a bigger problem.”
On this day, the country also kicked off a new national program, Know Your Status. Now that the government has promised to provide HIV treatment to everyone living with the virus who wants it, testing makes more sense.
As part of its World AIDS Day ceremony in a field across from the hospital, after official speeches have been made, people get in a long line to be tested for HIV as part of the official kick-off for Know Your Status. The program seeks to test everyone age 13 and up, hiring outreach workers from each community to go out and offer an HIV test.
More education, less stigma
In Johannesburg, a small grassroots organization, Community AIDS Response (CARE), focuses on outreach, counseling, and home-based support for people living with HIV/AIDS. Speaking with several young women outreach workers, they tell me that there is less stigma today than before. People are more aware and more understanding of HIV. Said one, “We give people information and tell them it’s important to know their HIV status.”
Didi Mojapelo, a veteran nurse for 20 years before she decided to go into HIV care, says, “It’s like TB when it started. People were ashamed to say they had it.” She said there’s more openness now with HIV.
In a country like South Africa, with rural areas everywhere, reaching the homes of people with AIDS can be tricky. When Mojapelo told CARE Director Lauren Jankelowitz that she had to cross a river to reach one patient, Jankelowitz thought she was speaking metaphorically—until she saw a photo. Mojapelo literally had to cross a small river, walking across slippery boulders, her car left by the side of the stream. Mojapelo says that CARE workers sometimes have to carry patients to an ambulance, because the roads are so bad.
She said the city is often not much better. Elevators are frequently out of order (déjà vu to what my co-associate editor Keith Green wrote regarding HIV outreach in a Chicago housing project, in the November/December 2005 issue of Positively Aware). Mojapelo once had to climb 11 flights of stairs to reach a patient.
“If you don’t have passion and dedication, you won’t be able to do the work,” Mojapelo said. “Life goes on, and the worker must go on.”
The outreach workers tell me that patients have few side effects from drug therapy, and that most of them occur early, in the first few weeks or months, before going away, and then the health of the patients improve. This in turn brings more patients to the services of CARE.
“Patients refer people to us,” said Mojapelo. “They’re starting to open up, because they need help.” She said counseling is very important, and is necessary before people are put on treatment.
CARE offers support groups, and Mojapelo said it’s helpful to people to meet others with HIV who’ve been healthy for many years. This reminds me of our support groups here at Test Positive Aware Network, and how important they are to our members.
Funders
For its coverage of World AIDS Day, The Star newspaper in Johannesburg featured a front page story and photo of President Bush and a South African mother and her child, who are living with HIV. The family receives medication through the Elizabeth Glaser Pediatric AIDS Foundation.
 Bristol-Myers representatives say that Secure the Future is the largest private donation to Africa to fight HIV, but there are so many other funders as well: the Elizabeth Glaser Foundation; the Elton John Foundation; UNICEF; the World Health Organization (WHO); the Global Fund for AIDS, TB and Malaria; the European Union; the (U.S.) President’s Emergency Plan for AIDS relief (PEPFAR); and many universities, including Columbia University and Boston University. And like BMS, other drug companies have lowered the price of their HIV medications in African countries.
Bristol-Myers’s donation included a successful study of the use of Viramune to prevent mother-to-child transmission, even though it’s not the company’s drug. Viramune is a direct rival to Sustiva, a BMS drug that cannot be used in pregnancy. As I looked at the hospitals and other programs that receive BMS funding, I thought, “Sustiva paid for this. Reyataz (another highly successful HIV drug from BMS) paid for this.”
Red ribbon
In Gaborone, Maseru, and Johannesburg, the red ribbon representing HIV is everywhere, on billboards and on banners stretched across large government fences. In Botswana, a soccer team advertises HIV awareness with the red ribbon and the slogan, “Kick HIV/AIDS out of the country.” In Maseru, one television station has a red ribbon in the corner of the screen all the time. More awareness equals less stigma, equals better prevention and care.
It reminded me of stopping in London on my way to Durban. I visited the Museum of Modern Design and saw an exhibition of radios. One of them was a wind-up radio that did not need batteries or electricity, designed to fight AIDS in Africa. Because people did not have electricity, they could not keep up with the news, including this new disease and how it’s spreading across their continent.
Seeing the red ribbon now showed me how important it is as shorthand for awareness, reminding people that the virus is out there, and urging them to be more compassionate to people with HIV/AIDS.
Doctors and interns interested in the Pediatric AIDS Corps should visit www.bayloraids.org.
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