Fighting AIDS at Home
& on Foreign Soil
by Eve Jacobs
UMDNJ - School of Nursing program has built a reputation for its successes stemming mother-to-child transmission of HIV worldwide and raising standards of care for those with HIV/AIDS both in the U.S. and abroad.
ometimes old stories are well worth retelling. This one certainly is. It’s about the sudden death of a daring young man — Francois-Xavier Bagnoud — whose helicopter went down over Mali, West Africa, 20 years ago. An accomplished pilot, he had flown more than 300 other rescue missions — most into the mountains of Switzerland for patients needing to be rushed to the hospital or searching for lost skiers during deadly blizzards.
It’s also the story of his mother, Albina du Boisrouvray — a journalist and film production company founder — who turned her profound despair into the impetus to launch a worldwide effort to better the lives of children and mothers with HIV/AIDS. It’s ultimately a tale about extraordinary people battling an extraordinary epidemic both in the U.S. and in areas of the world most of us will never see. And odd as it may seem, it’s a story linking Newark, New Jersey to the young French pilot and his mother, a countess, who sold off $100 million in paintings, jewelry and businesses to start up this global initiative.
For those not well versed in the HIV/AIDS story, the Newark connection may seem
unlikely. But those “in the know” treasure a series of golden moments of medical history in our own backyard. In 1981, UMDNJ-New Jersey Medical School (NJMS) pediatrician and immunologist James Oleske was one of two physician-researchers to identify the very first cases of AIDS in children. It was late 1980 when a very sick 4-month-old baby was admitted to UMDNJ-University Hospital in Newark with pneumocystis pneumonia. Within a month, the child died. About one year later, an extremely ill heroin addict came to the same hospital. Oleske suspected the man had contracted Acquired Immune Deficiency Syndrome (AIDS), a new disease at the time, and recognized the addict as the infant's father. He made the connection between infant and father, and suddenly understood that the baby had probably been born with the disease, which may have been transmitted by her mother. This insight proved pivotal in the search for the cause of AIDS. (HIV had not yet been identified and no one knew how the disease spread.)
Oleske became a local hero both for this discovery and for his compassionate care of children with AIDS from Newark and its environs. With Mary Boland, DrPH, from UMDNJ-School of Nursing (SN), and a dedicated team, he treated hundreds of children with the disease during the 1980s. All of them required constant, intensive medical care and social services, and some died terrible deaths.
In 1985 CBS TV began filming a movie about UMDNJ’s pediatric AIDS program. Released in April 1989, “The Littlest Victims” tells the story of Newark’s children with AIDS in the early ’80s and of the amazing group of healthcare workers that took care of them despite inadequate financial and emotional support. (For those who are interested, the movie is available through NetFlix.)
“The Littlest Victims” inspired at least one person to action. Albina du Boisrouvray came to Newark after reading a review of the movie. The story goes that when she entered the waiting area for pediatric HIV/AIDS patients, which was filled with toys and stuffed animals and photographs of the patients, she knew she had found a place where children with AIDS and their families were treated compassionately.
No one at the Newark facility knew anything about the Countess’s background.
From the FXB Center, clockwise from far left:
Melody Corry, MSc, global program support coordinator; Rebecca Fry, MSN, APN, advanced practice nurse/global
programs; Virginia Allread, MPH, global program manager;
Nalin Johri, PhD, MPH, MA, senior research associate; Linda S. Podhurst, PhD, acting executive director, FXB Center
Several visits later, she disclosed her identity, inviting the group to apply for a grant from the Foundation. They received $2.25 million: $1.2 million to underwrite research, and $1.05 million for training medical personnel worldwide. These are the funds that established the Francois-Xavier Bagnoud Center (FXB Center) at UMDNJ in Newark.
Sitting around a small table in a cramped, overheated office in Newark’s Central Ward, it’s difficult to connect the women discussing their work for the FXB Center with the tragedy and drama of the Foundation’s beginnings, and the early years of AIDS. And yet, almost 20 years later, no one would argue that their job is far from done.
There are an estimated 40.3 million people in the world with HIV/AIDS, 25.8 million of them in Sub-Saharan Africa, according to figures published by UNAIDS/WHO in November 2005. Young people ages 15 to 24 account for half of all new HIV infections worldwide, numbering more than 6,000 new infections every day. Africa has 12 million AIDS orphans. Even in the U.S., the epidemic is far from over. It is estimated that more than one million people are living with HIV/AIDS in this country right now.
These are just a few of the staggering statistics that send UMDNJ’s FXB Center workers out on the road constantly. “The road” is sometimes unpaved and often takes them to the heart of the epidemic on faraway continents, and at the end, there is no rainbow. But the FXB Center employees are not unlike the young man for whom the Foundation is named: They have enormous energy for their work; they’re highly focused and skilled; they are compassionate and they are daring.
Meet Linda Podhurst, PhD, acting executive director of the FXB Center, and Virginia Allread, MPH, global program manager, two of the prime movers of the Center’s international work. With a proven track record that is decades-long, it was one of 10 centers to win a 2005-2006 University Technical Assistance Project Grant. This year it will receive approximately $4.5 million from the CDC Global AIDS Program.
Podhurst and Allread go into countries where AIDS is endemic and work with staff from the national ministries of health and others to develop comprehensive training materials on the prevention of mother-to-child transmission of HIV. The materials are used to train in-country healthcare workers — most of whom work in pre-natal clinics — who become the driving force in setting up systems to test pregnant women and provide those who test HIV-positive with antiretroviral medicine and advice on safer infant feeding practices. According to Allread, these two interventions can reduce the number of babies who contract HIV from their mothers by 50 percent or more.
The FXB Center spent nearly two years working with the World Health Organization (WHO) and the CDC to develop a “generic” training package. At last count, it has been translated into Spanish, French and Russian, and has been used by 32 countries in Africa, Asia, South America and Europe. FXB Center staff has adapted the package in Zanzibar, Botswana, Malawi, Kenya, Zimbabwe, Nigeria, Tanzania and Guyana. When the team goes on-site, their goal is to work within the government’s framework for getting a national program up and running quickly, and adapt this generic training package to include national policies and take account of local culture and expectations.
The FXB Center team spends one week in the country at the front end of the process. Most of that time is devoted to “meetings that can last from 8 A.M. to 8 P.M. or later” and on site visits to local clinics and hospitals, according to Allread. Not only do team members concentrate on absorbing nuances of the national personality — from politicians, administrators, physicians, nurses and HIV/AIDS patients — but they have to quickly convince the key “stakeholders” of their own ability to do the job expertly.
The team returns to Newark when the week is up and spends the next couple of months writing the country-specific training curriculum. When it’s ready to go, the group goes back for another two weeks to pilot test the draft curriculum and then meet with national participants to discuss how to further develop and edit it to ensure an exceptional final product. Rewriting and winning final approval by the national government’s designee can take several more months.
In Guyana, the FXB Center — with funding from the CDC — has established an office at 110 Duke and Barrack Streets in Kingston to carry out a broader spectrum of responsibilities. The office works under the Ministry of Health and is charged with
providing care and treatment for persons living with HIV infection in that country. The program has 42 employees, 32 of them in-country FXB Center staff, the other 10 United Nations’ (UN) physicians.
According to Podhurst, the prevalence of HIV in Guyana is the second highest in the Caribbean and Latin America — right behind Haiti — and Guyana is the second poorest country in the Western Hemisphere. “But I think we’re making a difference there,” she says. “When we first went into Guyana, only a handful of people with HIV were receiving care. As of this past December, there were 1,200 people with HIV receiving care and taking antiretroviral treatment.”
The FXB Center not only provides antiretroviral therapy to patients, but also manages the care of those who are co-infected with TB and HIV, and ensures the provision of training to Guyana’s healthcare workers to raise their clinical skill level. They are also charged with making sure that a national laboratory will be built to assure quick and accurate diagnosis of HIV and support HIV-related care and treatment. “Anyone in Guyana who needs treatment has access to it now,” Podhurst says.
In Botswana, where the prevalence of HIV infection is about 40 percent, FXB Center staff trains local healthcare providers on preventing mother-to-child transmission. They also work with the Ministry of Health to develop a comprehensive retention strategy for healthcare workers who, once trained, are continually recruited by resource-rich countries.
The FXB team has written and designed two training modules targeted to healthcare workers in the country: “Caring for the Caregiver” and “Stigma and Discrimination — Prevention of Mother-to-Child Transmission of HIV.” Understandably, healthcare worker burnout is a major issue in Botswana, according to Allread, and the training manuals will be used throughout the country. The FXB Center has also adapted the generic training package for the Botswana Ministry of Health and is in the process of developing two additional manuals: one on routine testing of all pregnant women and the other on care of women and children with HIV infection.
There are not nearly enough pages to detail the work that the Center has done and the work that’s ongoing. Over the years, it has had enormous successes preventing mother-to-child transmission and caring for HIV-infected children into adolescence and adulthood in the U.S. It has also brought healthcare providers from various countries to UMDNJ’s Newark campus to improve their clinical skills and gain new knowledge, which they then bring back home. Most of the study tour trainees are then responsible for establishing clinics in their home countries for the care and treatment of HIV-infected children.
The Center also collaborates with the University of California at San Francisco on a Website that is updated daily. Go to WomenChildrenHIV.org for the latest information on preventing mother-to-child HIV transmission. In remote areas of the world as well as in more developed countries, this site provides a wealth of readily accessible information. It has had more than one million hits.
The FXB Center provides training and support for nurses, doctors, social workers and others fighting HIV/AIDS in countries across the globe, and also throughout the U.S. With 112 employees and funding to the tune of $13.5 million annually from
external sources, the Center must be doing something right.
From a humble office in New Jersey, the FXB Center’s teams work on far-reaching initiatives that impact the HIV/AIDS epidemic worldwide. And they continue to do their work with the compassion that won the heart of a countess on her visit to Newark many moons ago.