Dr. Juliana Bacis Ceddia, a physician specializing in cardiology, has created an effective method for treating heart defects among infants, children, and adolescents from poor families. She has demonstrated that it is possible to reform Brazil's rigid and poorly funded public health system to provide free, high-quality, specialized care to people of all classes.
La nuova idea
Dr. Juliana Ceddia has created a model for providing high-quality, cost-effective, and free treatment to socially at-risk children with congenital or acquired heart defects. These children experience a higher incidence of heart-debilitating rheumatic fever and chronic heart defects because they lack access to prevention and timely medical treatment. Juliana is improving the public health system by creating a citizen organization consisting of doctors, psychologists, and social workers. Independent from the public system but situated within the Getúlio Vargas Filho Hospital, where Juiliana works, the Friends of the Heart Society improves services and the social environment while creating incentives to upgrade hospital facilities and raise money from government and private donors. Juliana and her organization have enhanced the effectiveness of medical personnel and increased the volume and quality of treatment. An emphasis on prevention and early medical intervention has lessened the need for costly surgery and improved the hospital's efficiency.
According to the World Health Organization, Brazil has one of the world's worst public health systems. Brazilians generally distrust the poorly funded and overly bureaucratic healthcare system, which government officials have referred to as a "bottomless pit" of wasted resources. Public health professionals are demoralized by their inability to deliver good care, yet feel unable to make the system better. Poor people are the least well served, especially those who have heart ailments and other medical conditions that require early intervention and lifelong care. Each year, over two thousand babies are born with heart defects in the state of Rio de Janeiro. Some two hundred forty are born within Juliana's metropolitan region alone, which includes the municipalities of Niterói, São Gonçalo, Itaboraí, Tanguá, Magé, Guapimirim, and Maricá. Many more children acquire heart problems after birth, primarily through rheumatic fever. Those who come from poor families are unlikely to receive effective treatment or preventive medical care. Rheumatic fever sufferers who are treated too late must receive painful injections every twenty-one days for the remainder of their lives. The hospitals lack medicine and equipment, and the long waiting list for treatment prevents many young patients from having life-saving surgery. Furthermore, most public hospitals lack specialists, particularly pediatric cardiologists, and must refer cases to other hospitals, which increases the delay for receiving urgent care. Instead of living productive lives, these children often die prematurely or become disabled.
Juliana began developing her approach while working within the public hospital system. Soon after joining the staff of the Getúlio Vargas Filho Hospital as a pediatrician in 1995, Juliana offered to use her specialization in cardiology to spend one day a week treating patients with heart problems. The hospital, like many other municipal hospitals, lacked sufficient specialists to meet the high demand for cardiac treatment. Many of the cases she encountered were children and adolescents who could have been spared surgery and costly treatment had they received medical attention sooner.Juliana devised a strategy for improving the hospital's cardiac care, especially for the children of the poor. She realized that if the hospital increased the number of patients it examined, it could claim additional federal funds, which it could use to pay for the rental of an echocardiogram machine. This equipment would not only help give better quality care but attract more patients to the hospital, which would generate even more federal funds. Her strategy transformed the hospital into a model of pediatric cardiology for the city and neighboring municipalities. In 1999, the city finally purchased an advanced echocardiogram machine, and Juliana had the satisfaction of knowing that the Getúlio Vargas Filho Hospital offered fine pediatric cardiology.To encourage her colleagues to take responsibility for the care they were providing, and to avoid the barriers raised by the rigidity of the public health service, Juliana decided to create a citizen organization that would exist within the hospital but have the independence necessary to leverage resources. Juliana founded the Friends of the Heart Society in 1998 by pulling together a multidisciplinary team of doctors, psychologists, and social workers, whose complementary talents can provide high quality care for children suffering from heart defects. Juliana has been able to show that when the hospital enhances its specialized cardiac care, it gains two benefits: 1) it attracts more patients, which increases the amount of government funding to the hospital; and 2) it reduces expensive surgery by providing better drug treatment and follow-up. Juliana and her organization have thus created an incentive for the city to support the program with equipment, space, and personnel. Because of Juliana's persistence, a municipal hospital that could not effectively treat children in need of cardiac care currently provides two hundred seventy treatments per month for children up to age fourteen who have congenital or acquired heart defects. Families of patients receive social and psychological support from the team and participate in the treatment, so that they fully understand the illness and can better care for their children. The Friends of the Heart team also establishes partnerships with schools and other social agencies to attend to the non-medical needs of patients and their families.To ensure the operation's sustainability and expansion, Juliana has begun assembling public and private investment to build a diagnostic center for children with rheumatic fever and heart defects at the hospital. Support from the Brazilian Economic and Social Development Bank will help fund a pharmacy and laboratory to produce intravenous nutrients and other products. Sales income will be reinvested in both the hospital and Friends of the Heart to support health professionals involved in the program, many of whom volunteer their services or have release time from the hospital. To provide additional support for the program and the families it cares for, Juliana is developing partnerships with such citizen organizations as Ashoka Fellow Vera Cordeiro's Renascer (Group for Life) and Maria Magdalen House.Juliana plans to publicize her work as an alternative approach for addressing the problems of health care in Brazil. She has secured the full support of the city hall of Niterói, which is interested in replicating the approach in other hospitals, and she has partnered with a pharmaceutical laboratory to finance the marketing of her project.
As a medical student, Juliana Bacis Ceddia was troubled by the disillusionment of the doctors who worked within the public health system. In the face of a hard daily reality, they had lost their dreams and aspirations for making real change. They thought, "I should do something," but did not know what. Her specialization in pediatric cardiology enveloped Juliana in the drama of children with heart defects who came from families lacking the resources to deal with chronic, debilitating, and stigmatizing illnesses. Like her colleagues, Juliana felt the constraints of a public health system that was unable to attend to the children and their families, but instead of succumbing to the frustration she applied the same philosophy she uses for treating sick patients: If the treatment is not working, you must innovate. Juliana believes that efficient actions begin with small movements of one person or one group of people, which influence a larger group, and so on, until a leap of collective consciousness changes the entire system. "If you want to make a structural change, you have to start with a simple idea," she says.