A pediatrician by profession, Marcela Zubieta is alleviating the suffering of child cancer patients through an integrated approach which combines improved medical attention with complementary support services for poor patients and their families.
The New Idea
Building upon her own experiences during her young daughter's failed struggle against cancer, Marcela Zubieta is introducing in her native Chile a system of dealing with child cancer that challenges the traditional practice of allowing economic conditions–be they those of the hospital or those of the patient–to limit the availability and the quality of diagnosis and treatment. By mobilizing additional resources from public and private institutions for such activities as purchasing new equipment and building a home for patients and their families who come to Santiago from outlying areas, she is complementing and improving the existing services available to those in need of medical attention. At the same time she is educating and involving a wider spectrum of society about the plight of cancer patients through media and fundraising campaigns and a growing volunteer program. Moreover, noting the rise of cancer as a leading cause of child mortality in Chile, Marcela is demonstrating that as a country's health panorama changes, so must the attending institutions. Because child cancer in many cases can be treated if diagnosed in its earlier stages, Marcela is urging the Chilean medical establishment to improve its diagnosis capacity and is undertaking plans to create a national diagnostic center aimed at drawing in patients from poor communities. Similarly, because she recognizes that infection is one of the greatest threats to cancer patients, she is working to create separate waiting rooms and treatment facilities for cancer patients.
Much to the surprise of the medical establishment, cancer has become one of the leading causes of death among children under the age of 15 in Chile. Each year, some 400 additional children become afflicted. Over 80% of the children diagnosed with cancer in Chile are treated in public clinics and hospitals. Like its counterparts throughout much of Latin America, the Chilean public health system is designed to provide for the medical needs of those unable to afford private care. Though accustomed to treating the more traditional infirmities found among children, it has proven ill-equipped to handle cancer. The expensive technology for the diagnosis and treatment of cancer that is available to economically well-off patients is simply not found in medical facilities catering to poor patients. In the case of cancer, the diagnosis often comes too late, if at all, due to lack of proper testing equipment. For those who are diagnosed, the Chilean Ministry of Health provides free chemotherapy, in accordance with standards that are uniform throughout the country's 12 accredited pediatric oncology centers.
Though the drugs do make a difference, a combination of other factors conspire against the child's chances of survival. Cramped and inadequately sanitized medical facilities permit the easy spread of infections between, for example, a child with pneumonia and a child with cancer whose immune system has been weakened by the disease. Poverty, unhygienic conditions at home, and insufficient financial resources to travel hundreds of kilometers or more in search of treatment are common reasons why cancer is able to flourish and take a toll on young lives.
Faced with limited financial and human resources, the medical system does what it can to treat and mitigate the suffering of cancer patients, but rarely can it provide the integral treatment now commonly found in developed countries. In Chile, as in most of Latin America, there are no Ronald McDonald's or Hospice houses to complement medical treatment in the form of outpatient facilities, temporary housing for patients and their families, specially assigned volunteers, etc. Cancer patients and their families are forced to fend for themselves, emotionally and in practical terms, upon arriving in Santiago or elsewhere to receive medical attention.
In 1991, together with a group of parents whose children too had battled cancer, Marcela started the first integral treatment program in Chile dedicated to serving the needs of underprivileged children suffering from cancer and their families. Since then, Foundation Our Children has developed an array of programs–to date having served over 800 economically disadvantaged children and their families–which both improve the medical attention provided to the children and enhance their quality of life. To reduce the risk of infection, the Foundation has built in-hospital treatment and waiting rooms exclusively for children with cancer, complete with games, videos and other activities to ease the children's anxiety and suffering. It provides medicines that are typically unavailable in the public health system, as well as intravenous catheters and specialized equipment too expensive for public hospital budgets. To combat the malnutrition that often speeds cancer's effects, Marcela has set up a meals program. Professional psychological counseling is made available to the children and their families. There are also dental and optometry services. Moreover, with the support of local business and foundations, the Foundation has built a comfortable home for children who must travel to Santiago to receive treatment.
In 1997, Marcela and her colleagues started a school program which allows children in treatment to continue their studies with the personalized assistance of in-house teachers. Through an agreement with the Ministry of Education, the children are now able to take their exams outside of school, and thus avoid falling behind academically. Moreover, the program facilitates the children's reinsertion into school once their treatment ends.
A team of 35 volunteers, all women, are responsible for carrying out the Foundation's complementary social programs, such as taking meals to families of sick children, visiting the children while in treatment in the hospital, organizing the "Impossible Dream" program for children with terminal cases, and organizing birthday celebrations. The emotional ties established between the volunteers, the patients, and their families are a testament to Marcela's firm belief that cancer care must extend beyond the treatment itself and beyond the walls of the hospital.
Now that she has tackled the treatment end of the plight of poor children suffering from cancer, Marcela hopes to finance and build a top-quality national Diagnostic Center, which would be the first of its kind in Chile, to address the lack of timely diagnoses in the case of child cancer patients, particularly those without access to adequate medical attention. Students at the Catholic University are now collaborating by evaluating the Center's business plan and thus provide guidance to Marcela in the initial phases of this endeavor.
Thanks to Marcela's persistent marketing efforts, the Foundation receives regular press coverage, which she hopes will assist in the spread of the model. She also plans to use her contacts at the Chilean Ministry of Public Health, St. Jude's Children's Hospital, the Ronald McDonald Foundation, and a variety of other health and cancer-related institutions to help replicate the model.
Though Marcela has dedicated nearly 30 years of her life to medicine, her quest to improve the treatment and services provided to child victims of cancer and their families hits even closer to home. In 1989, her third child, Claudia, who was 18 months old at the time, was diagnosed with brain cancer. As medical professionals, Marcela and her husband had access to the best resources in Chile and were able to detect rapidly that the tumor was malignant. After requesting emergency treatment from hospitals throughout the United States, the Zubietas traveled–despite the enormous financial burdens such a trip entailed–to St. Jude's Children's Hospital in Memphis, Tennessee, where young Claudia was treated for nearly two years. From the outset, Marcela was awestruck by St. Jude's: from the top-notch doctors and equipment, to the system of volunteers whose purpose was to ease the suffering of cancer patients and their families through personalized attention. Marcela and her family formed a special bond with the volunteer to whom they had been assigned, a young Mexican woman named María. Although St. Jude's was unable to save her daughter from cancer, her years battling the disease taught Marcela that what matters in life is not to live long, but to live well.
She realized that, regardless to what extent the physical pain of illness can be treated, there are ways to diminish the emotional pain suffered by both patients and their families. She also realized how privileged she and her family had been in terms of access to the best the medical establishment had to offer. Hoping to use her own experiences as a means of improving the plight of other families with children suffering from cancer, particularly those in less fortunate economic conditions, Marcela launched a full-scale effort which has already improved the lives of hundreds of child cancer victims and their families.