Important note: Information in this article was accurate in August 2000. The state of the art may have changed since the publication date.| Introduction Components of 'Step Forward' Underlying Principles Sidebar: 'Stepping Forward' with an IAPAC Partnership in Romania Sidebar: AIDS and Children: A Statistical Snapshot |
Something was not quite right. Yet the Abbott Laboratories delegation could not immediately identify the source of the discord. The small group, headed by William G. Dempsey, Abbott's senior vice president of international operations, was visiting a Tanzanian village in the course of learning more about the local population's HIV-related needs.
John Leonard, Abbott's vice president for pharmaceutical development, recalled the scene that met him and his colleagues, whom the villagers received as honored guests. "A group of kids from the school came out and sang some Tanzanian songs in Kiswahili," Leonard said. "Then some old men came out and did some dances for us." As the group studied both the performers and the villagers who had turned out for the show, they finally realized what--or rather, who--was missing.
"There was no one in the middle," Leonard said, referring to the ages of the Tanzanians in attendance. The village, he and the other visitors came to realize, is a textbook example of one of the most troubling characteristics of the African AIDS epidemic. Like many communities in Tanzania and other hard-hit African countries, the village has lost virtually an entire generation to AIDS. Many young adults are dead. Elders attempt to care for the children left behind--a large proportion of whom are HIV-infected--but the extended family network has been stretched to the limit. Thus, a growing number of children are being left without care.
Leonard and his colleagues had long known about this epidemiological trend--it had, in fact, figured into Abbott's decision to launch its Step Forward . . . for the World's Children initiative, the latest in a series of philanthropic public-private efforts spearheaded by the world's largest pharmaceutical companies. Still, seeing an epidemiological trend take such a vivid form before their eyes startled the visitors.
Leonard remembered being struck by the implications for future generations of Tanzanians. "The transmission of culture is not happening," he said. "These people are going backward, not forward."
Leonard's observations about this eastern African country, along with Abbott's overall experience with Step Forward, can be thought of as a provisional blueprint for how the global pharmaceutical industry might contribute most effectively to the fight against AIDS. The Step Forward initiative was formally launched in July 2000, after an Abbott team spent a year investigating the needs of AIDS-impacted populations, working with groups such as the International Association of Physicians in AIDS Care (IAPAC) to identify priorities, and laying the necessary groundwork for such a complex program.
An important early question for Abbott: what should be the focus of the initiative? Given that an estimated 34 million people are infected with HIV worldwide, and that the vast majority of those people are receiving inadequate care, it can be difficult, to say the least, to know where or how to begin. Abbott made the decision to focus on children--particularly children who have lost one or both parents to AIDS.
With more than 13.2 million children who are now AIDS orphans, according to UNAIDS estimates, and with the number expected to swell to 40 million by 2010, the need for action on the AIDS orphan issue comes across like a scream. What has further influenced Abbott to take up the cause of AIDS orphans is the disquieting realization that the vast majority of them are not able to advocate for themselves.
Because the children who are the most vulnerable to the effects of the AIDS epidemic live in resource-limited nations throughout the world, Abbott decided to make Step Forward global in its scope. Furthermore, recognizing that there are no quick fixes to a problem of this magnitude, Abbott has bravely established Step Forward with an open-ended schedule--the work will continue indefinitely.
Step Forward prioritizes four areas of need:
The activities that address these areas of need fall into two categories: Step Forward-initiated projects, such as the Tanzanian effort, and grants that fund projects administered by other organizations. (The source of the grants is the Abbott Laboratories Fund, Abbott's philanthropic arm.)
Abbott is kicking off the Step Forward initiative with two "inaugural charter grants" that demonstrate the company's support for the organizations providing effective services to the neediest populations worldwide. One of the inaugural charter grants has been awarded to IAPAC to support this organization's pediatric AIDS initiative in Romania.
What is notable about the IAPAC grant is that it will benefit an international alliance that has been in place for more than three years. The multifaceted partnership with Romanian healthcare providers is coordinated by IAPAC in collaboration with the Baylor International Pediatric AIDS Initiative (BIPAI) at Baylor College of Medicine in Houston, Texas, USA.
IAPAC, BIPAI, and the Romanian partners have long been clear on their highest priorities, which include the establishment of a state-of-the-art pediatric AIDS clinic in the city of Constanta. With detailed plans for the renovation of a donated warehouse already on paper, the alliance was able to leverage the Abbott funding to begin construction in early August. The Romanian group's readiness therefore enables Step Forward to hit the ground running in terms of its ability to have a positive impact--the new clinic is expected to officially open next spring.
(The other grant will help the International HIV/AIDS Alliance provide support to local AIDS services organizations in three hard-hit areas of India, again giving greater momentum to an already-existing program.)
Abbott's experience with Step Forward promises to be instructive to both the company and to outsiders. Some principles that have emerged thus far:
Acquire first-hand knowledge of the beneficiary's living conditions.
The Abbott delegation's experience in the AIDS-decimated Tanzanian village was hardly the only measure of what supporters are up against. "I came away from Tanzania really astonished at how deep and wide the [healthcare] problem is," said Leonard, whose June 2000 trip was his first visit there. "I went with Bill Dempsey into villages, orphanages, hospitals--the two of us came away sobered. Things we take for granted just aren't in place."
Abbott drew up the plans for its Tanzanian program in Tanzania, in partnership with Tanzanian government and nongovernmental organization representatives, in order to avoid a problem that thwarts the efforts of many outsiders. "You can make a list of all the things that you're going to do [to provide AIDS-related assistance in African countries], but then you get there and see that it's not going to work," Leonard said. "We are not able to go in and provide an American solution, because this is an African problem."
Another benefit of visiting an area targeted for assistance: seeing local people's challenges through their eyes makes it easier to appreciate their priorities. For example, seeing the extent of Tanzanian poverty led Leonard to conclude, "I understand a little bit better now how [the AIDS epidemic] could get that far out of control there. As immediate as [the threat of HIV infection] is, it's not as immediate as the need for food."
Address a community's infrastructure needs, including those not directly related to HIV/AIDS.
As Axios International CEO Joseph Saba observed, "If you focus only on the children, you won't be able to solve all of their problems. You need to also focus on their environment." Axios has provided programmatic consulting to Abbott on the Step Forward initiative, which hinges on the principle articulated by Saba. Based on assessments made in the field, Step Forward is prepared to deal with fundamental community needs such as nutrition, safe water, and medical supplies.
Including basic education as one of the four primary goals of Step Forward is Abbott's way of addressing one of the most devastating long-term consequences of the AIDS epidemic: the social, cultural and economic unraveling that occurs when children lose not only their parents and extended family to AIDS, but also their teachers and other community leaders. According to the recently released UNAIDS "Report on the Global HIV/AIDS Epidemic," the epidemic is taking a tremendous toll on learning. Some of this report's alarming findings:
"While more extensive HIV prevention and care services are urgently needed around the world, it is clear that comprehensive AIDS initiatives must simultaneously address the long-term educational needs of hard-hit countries," said José M. Zuniga, president of IAPAC. "Otherwise, the children who survive the AIDS epidemic will inherit countries that are economic and cultural wastelands. Furthermore, without education, that generation will be unable to stave off healthcare, political and economic crises, and a vicious cycle will be perpetuated."
Identify creative ways to maximize supporters' offerings.
Abbott's decision to take a hands-on role in the delivery of services, Leonard explained, came out of a recognition that the company's 15-plus years of work in the field of AIDS can be parlayed into far more than donations of money and medical supplies. Leonard pointed to the size and scope of Abbott's global workforce: 57,000 people, many of whom are being encouraged to volunteer for Step Forward.
Abbott has far more to offer than scientific and medical personnel; Step Forward also draws on the resources of the people who maintain the company's infrastructure. If Step Forward beneficiary organizations need information technology support or guidance on administrative issues, for example, they can look to Abbott for help. Furthermore, Abbott employees are being encouraged to make direct monetary contributions to Step Forward through a company-wide "adopt-a-child" program that channels donations to individual children in AIDS-devastated regions.
Respond to what local communities consider to be important.
The agendas of all of the first four Step Forward ventures are essentially the agendas of the communities being served. The International HIV/AIDS Alliance, for example, has not designed its own programs for India, but instead is following the leads of the indigenous organizations that it is assisting.
Similarly in Romania, Romanian healthcare providers have taken an active role in defining the features of this program. The staff under Rodica Matusa, director of the pediatric AIDS clinic at the Constanta Municipal Hospital, all share their ideas about the patients' needs. While IAPAC and BIPAI have contributed valuable information, "Dr. Matusa is the final authority on the care and treatment of the children at the hospital," Baylor's Mark Kline, an IAPAC trustee, stressed. "She's their physician."
Ask the communities targeted for services to take ownership.
Among the people working on international assistance efforts, there is a growing recognition that all of the resources in the world will not help a community unless that community has made a commitment to help itself. "There can't be passive involvement. People can't just be in the position of receiving gifts. They need to say, 'We want to work with you,' " said Leonard. "We could talk a long time about dollars, and I think that's irrelevant. It's about a society adopting new attitudes, processes and behaviors."
The commitment, Leonard added, needs to come from all levels: from individuals, village leaders, city and regional leaders, and national governments. The Tanzanian team, for example, works closely with everyone from community organizers to the Permanent Secretary of Labor and Youth Development, whose bureau has the greatest responsibility for orphans.
Start on a small scale and with reasonable expectations.
Perhaps the biggest challenge for residents of wealthy industrialized countries is figuring out where to begin on a problem as enormous as the global AIDS epidemic. "It can be paralyzing," said Saba. "You think, my God, how are we going to deal with all of that?" He followed this question with a humble answer: "You start with a few schools and a few households, you learn from your experiences, and you gradually expand."
"It's all incremental," added Leonard. "You need to start somewhere. The baseline is really low, and you need to acknowledge that." A challenge to leadership, he pointed out, is communicating the modesty of the goals to aid workers.
"I was talking with Bill Dempsey on the plane going back from Tanzania," Leonard said, "and we were saying that when volunteers come over here, they need to know what they're getting into and they need to set their expectations appropriately. We're not going to make people happy and healthy by snapping our fingers."
Abbott Laboratories' Step Forward . . . for the World's Children initiative has awarded one of two inaugural charter grants to the International Association of Physicians in AIDS Care (IAPAC). The US$1.09 million grant will enable IAPAC and several partnering institutions to advance a constellation of medical and social support programs in the port city of Constanta.
"AIDS orphans are perhaps the most tragic and enduring legacy of the communist regime that governed Romania until 1989, the subsequent economic crises, and the breakdown of medical and social support mechanisms," said IAPAC President José M. Zuniga, who, with IAPAC Trustee (and Baylor International Pediatric AIDS Initiative [BIPAI] Director) Mark Kline, has spearheaded the association's efforts in Romania since 1997.
IAPAC and BIPAI have worked collaboratively since 1997 to help Romanians improve the quality of care for children living with HIV/AIDS. Building on BIPAI's medical education efforts, the IAPAC-BIPAI Romanian Pediatric AIDS Initiative proposes a comprehensive approach to dealing with the complex issues affecting more than 5000 HIV-infected Romanian children--approximately half of whom are orphaned. The severe lack of resources on the governmental level coupled with donor fatigue has lent an even greater sense of urgency to the IAPAC-BIPAI effort.
Some features of the current situation in Constanta:
Through the Step Forward charter grant, IAPAC will distribute funding to and coordinate the work of partnering institutions, including BIPAI, the Constanta Municipal Hospital's pediatric AIDS clinic (where HIV-infected children in Constanta receive their care), and the Constanta Department of Protection for the Rights of the Child. In addition, IAPAC will launch its own activities, including the construction of "family homes" and the establishment of a physician exchange program similar to its recently launched Africa Medical Exchange Program (AMEP).
In this context, the Step Forward charter grant promises to directly and dramatically improve the lives of a vast number of Constanta's HIV-infected and -affected orphans. The funds will enable:
This new center can be thought of as the crowning jewel in the longstanding partnership between IAPAC and BIPAI. The BIPAI-IAPAC Romanian-American Children's Center will be housed in a warehouse donated by the Romanian government. Construction began in early August. When it is completed early next year, the center will become the primary care center for Constanta's HIV-infected children and for non-AIDS infected orphans living in IAPAC's seven family homes. The center will be administered by Rodica Matusa, who heads Constanta Municipal Hospital's pediatric AIDS clinic. IAPAC will provide operational support. BIPAI will provide clinical support.
The opening of the BIPAI-IAPAC Romanian-American Children's Center also allows for the establishment of a more formalized training program for Romanian healthcare professionals who will benefit from the experience of using cutting-edge AIDS drugs and technologies. Furthermore, by establishing a top-quality research infrastructure within the clinic, the partners in this initiative hope to attract far more clinical trials to Romania and other Eastern European countries whose physicians partake in training programs.Kline explained that current research standards in Romania and its neighboring countries have thus far made conducting studies in these countries unappealing to Western researchers and sponsors. "Clinical research was largely dormant in Romania and across Eastern Europe during almost 45 years of Communist rule," he said.
Matusa, who beyond her more than a decade of caring for thousands of HIV-infected children is recognized as a leader in addressing the plight of Constanta's orphans, welcomes the continuation of ongoing activities and the launch of new efforts that Abbott's Step Forward is making possible through its charter grant to IAPAC.
"Our collaboration with IAPAC and [BIPAI] can serve as an example for other countries," explained Matusa. "We recognize--as IAPAC, BIPAI, and now Abbott have recognized--that it is not only useful to secure funds for drug therapies, it is also necessary to have collaboration to achieve a comprehensive response to this problem--epidemiological, clinical, and social."
"Step Forward allows IAPAC and our partners to launch a comprehensive model of support for these vulnerable children--many of whom are traumatized by illness, the death of or abandonment of parents, and separation from siblings." --José M. Zuniga, president, International Association of Physicians in AIDS Care
The global AIDS epidemic
The sub-Saharan African AIDS epidemic
The Romanian AIDS epidemic
Sources: UNAIDS and the World Health Organization, unless otherwise indicated.
Kelly Safreed Harmon is the managing editor of IAPAC Monthly (kharmon@iapac.org).
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