As the Regional Chair of Latin America for Childhood Cancer International, CCI, the largest patient support organization for childhood cancer, Dr. Marcela Zubieta coordinates programs and campaigns, conferences, meetings, and training for member organizations in the region to transformatively improve the experience of childhood cancer diagnosis, treatment, and support for patients and families.
She has been a member of the international network of social entrepreneurs ASHOKA since 1999, and received an award from the Santiago Regional Medical College in recognition of her career in 2020. She was recognized as an Impact Woman in Chile in 2018 and as one of the 100 Most Influential Women in Chile a few years later.
Dr. Marcela Zubieta is a pediatrician and infectious disease specialist for cancer patients. She is dedicated to enhancing the care and treatment of pediatric cancer patients in Chile through her participation in several research initiatives focused on building and enhancing the best practices in this field.
She’s made a huge impact on the experience of families with children facing cancer diagnoses in Chile
Dr Zubieta’s focus on pediatric cancer began when she was 35, after her daughter, Claudia, was diagnosed with a rare brain tumor, Choroid Plexus Carcinoma. While there were no resources in Chile to treat her child for this condition at that time, Dr. Zubieta was able to fly with Claudia and the whole family to St. Jude’s Children Research Hospital in Memphis, Tennessee where a treatment protocol was offered.
Despite undergoing treatment, Claudia’s prognosis was poor due to the limited treatment options available even at St. Jude’s at the time, a stark contrast to the 70% survival rate for similar diagnoses today. Sadly, Claudia’s two-year battle ended with losing her life and the whole experience painfully underscored the urgent need for better resources and care for cancer patients in Chile. Dr. Zubieta saw clearly the significant disparity in resources available to cancer patients in Chile compared to that of developed countries at that time. This fueled her determination to make a difference in her homeland and to ensure that future families would have access and treatment available.
Other parents who had lived the same experience were invited to join her and together, they founded Fundacion Nuestros Hijos.
In 1991, Chilean public policies on cancer were slowly developing, but access to diagnosis and even to chemotherapy was limited. Efforts began simultaneously to focus on programs that address the psychosocial needs of patients and their families, who often face significant financial challenges, with monthly per capita incomes generally less than $100. In parallel, medical programs to support diagnosis, timely treatments and improvement in the quality of life of children were provided. Shelters to avoid abandonment of treatment and the creation of Hospital Schools for children with cancer – a pioneering initiative in the country – were started. Additionally, efforts led to the remodeling, construction and provision of equipment for eight oncology units as part of the Public Health Service.
In 2004, public policies regarding childhood cancer improved significantly, allowing Fundacion Nuestros Hijos, Dr. Zubieta, and her team to focus on specialized topics, including nutritional programs and home palliative care services. Dr. Zubieta’s foundation recognized a plan for early detection and appropriate referrals in order to improve survival. The Organization has been steadily growing, improving its capabilities, with a highly esteemed Board of Directors working alongside collaborators and volunteers very committed to the cause.
Given the years of experience as a social enterprise and the great role of Civil Society in the field of Oncology in Latin America, the foundation has developed the ENLACE (LINK) program to improve the capacity of local NGOs, guaranteeing better comprehensive services for cancer patients and their families.
The success of the foundation has had a domino effect through the ENLACE Program, inspiring similar initiatives in other parts of Latin America and is currently beginning to be replicated in Asia. Dr. Zubieta’s work extends to the public and private sectors. She also contributes actively to the National Cancer Plan in Chile.
The Foundation hosts interns from eight universities, allowing students to gain practical experience through the foundation.
In Chile, women play a crucial role in pediatric oncology, where Dr. Zubieta sees an empowerment of women in the field where the vast majority of the childhood cancer team is comprised mostly of women.
She highlights the need for continued support and resources for cancer patients, including new diagnostic tools and medications, and highlights the importance of family psychological support like that provided by her foundation.
Her foundation also focuses on early cancer detection, awareness campaigns and educational initiatives, working closely with international organizations such as the Pan American Health Organization (PAHO), the Latin American Society of Pediatric Oncology and St Jude’s Hospital. She is excited to hear about the work KTG is doing to improve awareness of the symptoms of eye diseases and eye cancer and sees great potential in partnering with her friends and colleagues in Chile and the region to take another step towards the elimination of preventable blindness through awareness and education.
Dr. Zubieta continues organizing and attending regional and international conferences, such as CCI’s upcoming Latin American Pediatric Cancer Conference in Guadalajara this June, to share knowledge among NGOs and in collaboration with regional and global experts. Their efforts are paving the way to improve cancer care and survival rates, not only in Chile but throughout the region and beyond. KnowTheGlow is thrilled to feature the impact and inspiration that is Dr. Marcela Zubieta and we look forward to working with her and her incredible colleagues in the months and years to come.
