Claudia Epelman is using a citizen-based approach to improve the diagnosis, treatment, and rehabilitation of children and adolescents who have brain tumors. Dissatisfied with Brazil's current methods, Claudia is directing human, technical, and financial resources at health institutions and caregivers to improve the quality and accessibility of services for young cancer patients.
The New Idea
On the medical side of the problem, Claudia is improving the diagnosis, treatment, and rehabilitation of children and adolescents who have brain tumors, the most serious cancer found in young people. Within existing medical institutions, she is redirecting resources to increase the institutions' technological capacities to treat and rehabilitate patients. Additionally, she is ensuring high-quality treatment for patients regardless of their socio-economic background. On the education side of the problem, Claudia is teaching parents, medical professionals, and teachers about brain tumors to promote early diagnosis. Claudia also trains caregivers to meet not only patients' physical necessities but also their psychological, social, and educational needs. Finally, she mobilizes teachers and families to reintegrate recovering patients into schools and society.
Based on mortality rates, brain tumors are considered the most serious type of cancer among young people. Every year in Brazil, fifteen hundred individuals are diagnosed with brain tumors, and the majority of cases occur in children ages four to nine. These tumors grow quickly, and they show early symptoms which, when recognized by parents, teachers, or health professionals, can lead to early diagnoses. Once diagnosed, these tumors require a targeted intervention that relies on MRIs and radiotherapy to locate and treat the cancer. Today, if their tumors are detected early and treated adequately, 60 percent of these patients can be cured. However, the treatment is extremely expensive, and adequate medical facilities are few and far between.The particular nature of brain tumors in young children demands a system for diagnosis, treatment, and rehabilitation that responds to the rapid manifestation, high mortality likelihood, and long-term effects of the disease. In Brazil, few hospitals have the resources-equipment and trained medical staff-to treat children with brain tumors. Of the forty hospitals in Brazil providing treatment for cancer patients, only a handful have the necessary MRI and targeted radiotherapy technology. The majority of hospitals rely on outdated cancer treatment technology inadequate for the treatment needs of brain tumor patients. Lack of access is exacerbated by the location of these specialized facilities in expensive private hospitals, beyond the means of low-income patients. Life-saving technology is under-utilized because neither an efficient inter-hospital referral system nor financial subsidies exist.
Resources for cancer treatment and rehabilitation are not only scarce, but also frequently misused or misallocated. Many hospitals invest money in aesthetic improvements but ignore the fundamental need to increase their treatment capacity in terms of technology and staff medical training. Moreover, current efforts are typically aimed at providing shelter for patients and their families. In some cases, shelters have housing for fifty or more children and their parents, whereas hospitals may have only two beds available. Patients waste precious time waiting their turn while their health deteriorates. Even when children do receive treatment, they experience higher instances of complications and long-term physical and mental consequences than adult patients. They require effective rehabilitation in terms of physical, psychological, social, and educational assistance. Rehabilitation and social reintegration rely on the education, training, and mobilization of a range of people, including parents, teachers, and health professionals. Last, children in treatment for and recovering from brain tumors typically suffer multiple long-term consequences. Despite progressive legislation to include students with disabilities in public schools, there has been little investment in training teachers to integrate these students and address their special needs. Families are ill-equipped to handle both the emotional and financial stresses that accompany the treatment and rehabilitation of a child with brain tumors.
Claudia has developed a range of interventions for mobilizing the citizen sector to improve the diagnosis, treatment, and rehabilitation of brain tumor patients. Designed to address the particular characteristics of the disease, her strategies focus on early diagnosis, technologically advanced treatment, and social and psychological rehabilitation. In 1998, she founded TUCCA (The Association for Children and Adolescents with Brain Tumors) to serve as an institutional base and reference for these strategies. Using her years of work in pediatric oncology, Claudia has positioned herself within a national network of institutions that deal with the treatment of brain tumors.To promote early diagnosis, Claudia is training parents, health professionals, and educators to recognize the disease in its earliest stages. She has developed materials and courses that spell out early symptoms and treatment methods. She produced an orientation manual for parents and has distributed it to all Brazilian hospitals with treatment facilities.To ensure technologically advanced treatment, Claudia shows health professionals how they can employ their existing resources in better ways. For example, she trains them in early diagnosis and more efficient utilization of MRI and radiotherapy technology. Rather than focusing on buying more machines, she is increasing the patient capacity of hospitals that have appropriate technology. Furthermore, she educates hospital administrators about the importance of increasing their facility's capacity to treat brain tumor patients in a timely and effective way. To increase access for all children, Claudia is creating a referral system and mobilizing medical institutions to donate treatment services to low-income patients who normally could not access treatment due to geographic and socio-economic barriers. She mobilizes external resources to fund the usage of the machines for low-income patients and has obtained donations from pharmaceutical companies to provide free medication. To provide the necessary medical and psychological support for rehabilitating patients, Claudia is also developing workshops for health professionals in both private and public clinics. Complementing her work with medical institutions, she forged an alliance between TUCCA and the experimental research center of the University of São Paulo medical school that provides TUCCA with the means to test and introduce new treatment technologies. To accommodate the special needs of the children and adolescents, Claudia trains teachers and families in techniques for reintegrating young patients into schools. Teacher workshops are aimed at alleviating the isolation many brain tumor patients experience upon re-entering society. Claudia works with teachers to create ways for young people to continue their education and to experience smooth transitions into their post-treatment school environments.
Finally, Claudia is mobilizing businesses and individuals to support TUCCA's programs and to direct significant financial resources to improving treatment conditions for patients. She uses high-profile events to increase the visibility of TUCCA's programs and to secure the resources needed to hold workshops and to ensure patients' access to treatment. Claudia has developed partnerships with nonprofits and pharmaceutical corporations which contribute funds and chemotherapy drugs for treatment. Such partnerships provide TUCCA with the resources to create agreements, such as the one developed with the Albert Einstein Hospital in São Paulo, to help fund treatment for low-income patients from other states of Brazil.Her successful resource mobilization strategies include the "adopt-a-bed," "adopt-a-patient," and "adopt-a-study" programs, aimed at increasing the number of patients being treated. Claudia plans to build additional partnerships with businesses, foundations, and civil society organizations to expand this "adoption" program. Claudia is working to introduce new technologies and medical training to all forty hospitals that treat cancer patients in Brazil, while continuing to raise the resources necessary to ensure that all young brain tumor patients have access to high quality treatment. She plans to use her resource-mobilization model as an example that can be adapted to other areas of cancer treatment, as well as other diseases.
A professionally trained psychologist specialized in psychoanalysis, Claudia has spent the past thirteen years improving the quality of life and emotional well-being of cancer patients. Her passion for working in this area began in 1985 when she completed an internship at the pediatric cancer ward of the Anderson Hospital and Tumor Institute in Houston. During this time, she became increasingly aware of the grave situation facing children and adolescents with cancer, specifically those with brain tumors. In addition to requiring high quality medical attention, these young patients, their families, and the medical staff caring for them required psychological attention, training, and support.At that time, the Brazilian medical sphere resisted psychological services as an integral part of its medical treatment model. However, because of Claudia's recognized expertise in this field, she was invited by a leading São Paulo cancer hospital to develop a psychology program for children and adolescents. Her specific focus on patients with brain tumors arose because of the special care this disease demands. She worked for nine years in this institution, developing strategies to treat children and adolescents. In 1995, she assumed the directorship of the psychology department and expanded her work to adults. Her programs earned the respect of skeptical medical professionals.
Over the years, she continued to explore other experiences in oncology through internships in Paris, New York, and Washington, DC. It became increasingly clear to her that the Brazilian health system lacked the capacity to effectively treat children and adolescents with brain tumors. While she could provide psychological services to her patients in the hospital, the larger problem was the number of patients who never made it that far due to lack of access to treatment, late or misdiagnosis, inadequate medical technology, and misallocated resources. Though the health system had the means to improve this picture, it lacked the mechanisms to do so. Claudia realized that instead of trying to improve this situation by treating individuals, she would have a much greater impact stepping outside the hospital. At this juncture, Claudia established TUCCA. Her professional and personal alliance with her husband, Dr. Sidney Epelmen, who heads the Brain Tumor Study Group of Brazil and Latin America, has helped her forge alliances and mobilize resources within the medical field. Her position as chair of the parents' group and the multidisciplinary team of the Pediatric Oncology Society continues to provide a strong platform for working with parents and educators and for mobilizing the citizen sector to improve the quality of care and rehabilitation in medical institutions.