International Association of Physicians in AIDS Care, Journal: March 1998 - Volume 4, Number 3
Mark W. Kline, MD
Presented by the author at IAPAC's First International Conference on Healthcare Resource Allocation for HIV/AIDS and Other Life-Threatening Illnesses, November 10-11, 1997, in Washington, DC.
Today, over 30 million adults and children worldwide have been infected with HIV. In 1997 alone over 6 million new infections occurred and there were an estimated 2.3 million deaths worldwide. The statistics for children are nearly as sobering. About 1 million children are infected with HIV worldwide and there were 590,000 new infections in 1997. HIV education, behavioral change, decimation of high-risk groups by the infection, and antiretroviral therapy led to a 13 percent decrease in the number of new HIV cases in North America between 1992 and 1996. But worldwide the picture is grim. Large increases in case numbers were reported in Eastern Europe, Southeast Asia and particularly in East Asia and the Pacific.
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In Romania, 4109 children with AIDS had been reported as of March 1997. Romania has the highest incidence rate of pediatric AIDS in Europe and one of the highest rates in the world. Children represent 94 percent of all Romanian AIDS cases and Romania accounts for 57 percent of all European pediatric AIDS cases. Fifty percent of all Romanian children with AIDS are orphaned or abandoned.
Most Romanian children with AIDS were infected with HIV as a result of now largely abandoned medical practices, including reuse of disposable needles and repeated transfusion of sick or premature infants with whole human blood. However, a second epidemic wave now is emerging, with most centers reporting growing numbers of infants with vertical HIV infection. As of March, 1997, Romania had reported 230 cases of pediatric AIDS attributable to vertical HIV infection, a case total surpassed in Europe only by Spain, Italy, and France. One hundred twenty-two (91 percent) of the 134 mothers who had a known route of HIV transmission had acquired the virus through heterosexual contact. In a study of 393 consecutive patients attending three sentinel clinics in Romania, the HIV seroprevalence rate among women presenting for prenatal care was 7.5 percent.
The four largest Romanian HIV treatment centers are located in Constanta, Bucharest, and Giurgiu. All of these centers care for children with AIDS, as well as for children who are HIV-infected but have not yet developed AIDS. Few Romanian children with HIV infection ever have received antiretroviral therapy. The prohibitive expense of currently available antiretroviral agents has been a major impediment to broader use of these health-maintaining and life-prolonging therapies. However, healthcare providers' lack of familiarity with indications for therapy, dosing and administration, and monitoring treatment responses also has limited use of antiretroviral agents. Treatment of complicating infections and malignancies in Romanian children with AIDS has been limited by lack of availability of, or expertise in, specific etiologic diagnosis. Most complicating conditions are treated empirically with only a limited array of available therapeutic agents.
Most Romanian physicians and nurses who currently care for HIV-infected children lack formal education or training in pediatric HIV infection, have limited access to relevant scientific and medical literature, and do not work or collaborate with their colleagues in other Romanian or US institutions on any regular or formal basis.
During the past two years, a multidisciplinary team of individuals from Baylor College of Medicine and Texas Children's Hospital has worked to establish a comprehensive program of Romanian pediatric HIV health professional education and clinical research. The program comprises a network of four Romanian clinical centers caring for about 2000 HIV-infected children. The goals of the program are to improve the health, well-being, and longevity of HIV-infected Romanian children, and answer critical clinical research questions of worldwide importance, by providing Romanian healthcare professionals with essential education and training, and by establishing the necessary infrastructure, expertise, and experience for HIV clinical research. In October 1996, the administrative and academic leadership of Baylor signed a letter of understanding with Daniela Bartos, MD, Minister of Health of Romania, in Bucharest, creating the Romanian-American Pediatric AIDS Education and Clinical Research Program.
The specific aims of the program are as follows:
Activities to date have included on-site health professional education by physicians and nurses from Baylor, short-term training of Romanian physicians and dentists at Baylor, and the purchase of medical and nursing textbooks and journals for participating Romanian centers. The Baylor team has developed a series of pediatric HIV nursing education syllabi. This educational program was implemented at each participating Romanian center in July 1997. The team also conducted a two-day symposium on pediatric and pediatric AIDS nursing in Bucharest in October 1997. This program--the first of its kind--attracted about 100 nurses from throughout Romania. Two Romanian physicians and one Romanian dentist have spent one to two months each at Baylor, receiving intensive education and training in pediatric HIV care and clinical research, and now have returned to Bucharest and Constanta. A virologist from the Institute of Virology in Bucharest, will spend the month of May 1998 at Baylor receiving training in HIV RNA quantification methods as a prelude to establishment of a formal collaborative relationship between the Institute and Baylor's Center for AIDS Research. A National Congress on AIDS in Romania, cosponsored by Baylor and the Romanian Infectious Disease Society, will be held in Bucharest in October 1998. Six US pediatric AIDS experts will serve as faculty alongside Romanian colleagues. The International Association of Physicians in AIDS Care is providing financial support for the congress.
A collaborative relationship to study oral manifestations of pediatric HIV infection has been established between Baylor and Constanta Municipal Hospital. This project will lead to a better understanding of common and debilitating complications of HIV infection in children. It is linked closely with a National Institute of Dental Research-funded study of oral manifestations of pediatric HIV infection which is ongoing at Baylor.
The Baylor team also has begun collaborative work with professionals from Timisoara, Romania, in the development of a pediatric HIV patient and family computerized database. Such a resource will be invaluable in tracking the evolution of the pediatric HIV epidemic in Romania and in planning future healthcare and social needs, clinical trials, and other clinical research studies. Medical record abstractors have been hired and data collection will begin soon in Timisoara, Constanta, Bucharest, and Giurgiu.
A major objective of the Baylor team is to develop a clinical trial which will for the first time provide hundreds of HIV-infected Romanian children with potentially health-sustaining, life-prolonging antiretroviral medications. Collaborative investigators have been identified in each of Romania's four major pediatric HIV centers: Constanta Municipal Hospital, Colentina Hospital and Victor Babes Hospital in Bucharest, and Giurgiu Municipal Hospital. The team from Baylor will provide initial and ongoing training of study personnel at each participating center and also will monitor continuously the conduct of the trial and quality of data.
One other activity of the Baylor team, conducted in collaboration with the children of the Houston Independent School District, involved the collection and shipment of thousands of stuffed animals to HIV-infected children in Romania during 1997. This project, called Project Cuddles, is now in its third phase, with plans to ship additional stuffed animals, toys, and coloring books in 1998.
Education and training of Romanian healthcare professionals is essential to improving the health, well-being, and longevity of more than 4000 children with AIDS, representing over half of all European pediatric AIDS cases. This education and training is a necessary prerequisite to establishment of HIV clinical research capabilities in Romania. Development of an HIV patient and family database will help to profile the Romanian pediatric HIV epidemic and monitor its evolution. Such a database also will facilitate identification and examination of critical HIV clinical research questions. Successful implementation and completion of a pediatric HIV clinical trial will help to establish a clinical research base for possible future studies addressing research questions of worldwide importance.
The Romanian-American Pediatric AIDS Education and Clinical Research Program is a unique undertaking by a US academic medical center, which has broad implications for fostering cooperation and collaboration between Romanians and Americans, to the benefit of HIV-infected children worldwide.
The activities described above have been supported by George Soros's Open Society Institute, the Pediatric AIDS Foundation, and unrestricted educational grants from Glaxo Wellcome, Inc., Bristol-Myers Squibb Company, and Hoffmann-La Roche, Inc. The International Association of Physicians in AIDS Care has pledged the financial support for the National Congress on AIDS in Romania, to be held in Bucharest in October 1998. Initial funding from the Open Society Institute was an important impetus to support from these other sources.
Baylor has provided substantial support for the Romanian-American Pediatric AIDS Education and Clinical Research Program. Ten healthcare professionals from Baylor have traveled to Romania one or more times over the past year to participate in education and training activities. Many other professionals from Baylor have been involved in the development and preparation of educational materials for use in Romania and the training of Romanian professionals in Houston.
The Baylor team believes that the Romanian-American Pediatric AIDS Education and Clinical Research Program's first year has been remarkably productive. A great deal has been accomplished with relatively modest funding. The entire first-year budget was about $80,000. Over the next two years, we hope to expand and enhance the existing program in several ways. First, we plan to establish long-term training in HIV disease prevention and treatment at Baylor for talented Romanian physicians, dentists, and scientists. Individual trainees will spend two or three years in the program and will have the opportunity to obtain an advanced academic degree or postdoctoral training. The program will make provisions for the reentry of trainees into Romanian pediatric HIV centers once US training has been completed. We have applied for a five-year grant from the Fogarty International Center of the National Institutes of Health in support of this part of the program. Second, we hope to provide promising US medical students, residents, and postdoctoral fellows with valuable short-term HIV clinical and research experiences in Romania. We have an outline of what these experiences will entail, but funding currently is not available.
Finally, we hope to expand the scope of the current education and training activities to include childhood cancers and AIDS-related malignancies. This is a significant spin-off benefit of the original program, for which other sources of support will be sought. The International Association of Physicians in AIDS Care has pledged to develop additional funding sources for this final phase of our initiative.
As all of the various components of the Romanian-American Pediatric AIDS Education and Clinical Research Program come into place, we believe that it can serve as a model and resource for countries throughout central and Eastern Europe. The importance of this program extends well beyond the subject of pediatric AIDS or the borders of Romania. I hope to be able to provide you with a progress report on our Romanian pediatric AIDS initiative when we meet again next year.
Mark W. Kline, MD, is professor of pediatrics, Baylor College of Medicine, Texas Children's Hospital, Houston, Texas.
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