The pain of childhood cancer is an indescribable one borne by both the young patients and their families alike. Besides the emotional and financial burden of this malady, most families have to leave their homes for prolonged periods and live in cities unknown to them to avail proper treatment for their children.
St. Judes, a sanctuary born from the tireless efforts of Shyama and Nihal Kaviratne, serves as a 'home away from home' for such families during their child’s cancer treatment. In this poignant interview, we are in conversation with Mr. Anil Nair, CEO, St. Jude India ChildCare Centres of this organization which has been serving as a guiding light for families navigating the treacherous terrain of childhood cancer since 2006.
Nair delves into the evolution of St. Judes from humble beginnings, caring for eight families in Mumbai, to a nationwide network of 43 centers across 11 cities today. While their impact is visible in the reduction in treatment abandonment rates and collaborations with major hospitals, their underlying commitment “Once a St. Judes child, always a St. Judes child” goes well beyond treatment periods.
The interview concludes with a glimpse into the future- their plans to expand services, nurture other NGOs, and continue the legacy of St. Judes for Life. The interview echoes the resilience ingrained in every child and family touched by St. Judes showing the path from pain to hope and triumph.
Scroll down to read the full interview:
Q. Please tell us a little about St. Judes' overarching vision and mission and how have they evolved over the years?
A. Founded in 2006 by Shyama and Nihal Kaviratne, and a dedicated group of volunteers, St Judes offers a 'home away from home' to underprivileged families during their child’s treatment for cancer. It works alongside Tata Memorial Hospital, AIIMS, New Delhi, Tata Medical Centre, Kolkata, and various cancer hospitals in 11 cities across India. St. Judes with its innovative model of holistic care acts as a bridge to fill the gap between what the hospital provides and what is actually needed by a child to beat cancer. This 'home away from home' is a hygienic, protective, nurturing environment which gives children the best chance of beating cancer.
Our Vision is to nurture and develop our sustainable model that places children undergoing treatment for cancer on the path to a happy and healthy life. In doing so, we hope every child will realize their potential and transform their lives. Our Mission is to facilitate the recovery of children undergoing treatment for cancer by providing clean, safe and cost-free accommodation.
Q. Could you take us through the journey of the organization in India- what are the most significant milestones that you have achieved and which were the most instrumental factors that enabled you to achieve the same?
A. St. Judes bridges the gap between what the hospital provides and what is actually needed to survive cancer – holistic care and support throughout their treatment. The greatest impact of this has been in ensuring that children do not abandon treatment and are less prone to infection during treatment. As per estimates shared by the Tata Memorial Hospital, our centers have helped reduce the treatment abandonment from over 30% earlier to less than 5%. St Judes works closely with over 23 major hospitals in India to identify the families who need help and aim to fulfil their nutritional and emotional needs during this stressful period in their lives. Some of the hospitals we work alongside include Tata Memorial Hospital, Mumbai, AIIMS, New Delhi, Tata Medical Centre, Kolkata, Dr. B Borooah Cancer Institute in Guwahati, and various cancer hospitals in nine cities across India.
At our centers, childhood cancer patients undergoing treatment at various hospitals get access to safe and hygienic accommodation, a dedicated spaces or family units, which come with a bed for the child to sleep on, and bedding for the parents to sleep alongside the child. The space also has cupboard for storage. All centers are furnished with shared kitchen facilities with kitchen equipment and nutritious ration so that the parents can cook meals as per their child’s preference. In addition, there are common bathrooms with clean and hygienic toilets and bathing spaces, as well as spaces to wash and dry their clothes.
When we started in 2006, we were looking after 8 families in Mumbai. Today, our network includes 43 centers strategically positioned throughout 11 cities in India, providing constant care to over 533 children and their families.
In order to ensure the well-being of our alumni (cancer survivors), popularly known as Judians, we have recently launched a new vertical - St. Judes for Life. This programme, named after the late Mrs. Rani Vicaji, acts as a specialised channel for providing timely and personalised support. Our ultimate goal is to assure Judians' academic, physical, and emotional development, allowing students to thrive, maintain optimal health, and chart a road towards success in various areas of life.
St. Judes is also collaborating with the Advanced Centre for Treatment, Research, and Education in Cancer (ACTREC), a component of the Tata Memorial Centre, to launch a massive 12-story venture on the ACTREC campus in Kharghar, Navi Mumbai. The project's broad goal includes providing complete support to 226 families dealing with cancer's challenges.
Q. How does St. Judes for Life initiative contribute to the long-term well-being and success of cancer survivors, and what role does it play in fulfilling the organization's motto 'Once a St. Judes child, always a St. Judes child'?
A. St. Judes' commitment, "Once a St. Judes child, always a St. Judes child," inspired the launch of St. Judes For Life in 2020, honoring Mrs. Rani Vicaji's memory. This vertical ensures that alumni (Judians) who battled cancer at St. Judes Centres receive ongoing support. St. Judes For Life aids in education, health, and overall success, offering financial assistance, online courses, devices, and post-treatment medical support. Career counseling and vocational skill opportunities are also provided through NGO partnerships.
When the program started in 2020, we had enrolled 326 children. Each year more children are added to the program as they cross the mark of being cancer-free for five years since cancer diagnosis. Today, 1359 Judians are a part of this vertical.
While we continue to contribute to this initiative a seventeen-year-old named Pradip Pal, who battled Hodgkin Lymphoma, recently excelled in his Higher Secondary Examination from the West Bengal Board. Staying at St. Judes' Premashraya Centre in Kolkata during his treatment, Pradip, the son of a farmer anhomemaker, overcame the challenges. He completed chemotherapy in 2018, diligently caught up on missed school work with St. Judes' support, and returned home. Grateful for routine check-ups, Pradip not only fought cancer courageously but also achieved academic success, passing with flying colors.
Q. Can you share specific examples of the impact St. Judes has had on the lives of children and families it serves, emphasizing the comprehensive support provided by the organization?
A. In rural India, families grappling with a child's cancer diagnosis face immense challenges – financial burdens, treatment uncertainties, and the struggle to access quality care in big cities and there has been a yawning gap in cancer treatment due to a lack of care facilities available for children being treated with cancer, and as with any other form of disease, clean hygienic conditions are vital, but also when curing cancer. These basic needs become important and, if not met, can be life threatening.
Over the last 17 years, St Jude has been a primary strength and pillar to these children and their families through each and every manner with their comprehensive holistic support, here are some examples:
- Three-year-old Hiya Khanam hailing from Darrang district of Assam and the daughter of Mr. Hasim Ali and Mrs. Anima Begam, has a twin sister. Hiya was diagnosed with blood cancer and was advised to undergo chemotherapy. It was very challenging for the family to leave behind one of their daughters with her grandparents even as their other daughter is battling the deadly disease. St. Judes has been a ray of hope for them giving them access to the best care and facilities. Their dedication, hard work, and perseverance have slowly yielded a positive result as they were able to go back home after Hiya was kept under maintenance. They will now visit for follow-up treatment. As Hiya's mother says, “Luck goes hand in hand with confidence. Fortunately, we can work on our confidence and improve it. It’s simply a matter of focusing on what we want and working hard to achieve it.”
- Similarly a thirteen-year-old Anchal Kumar from Bihar had to come to AIIMS Delhi in 2014 for blood cancer treatment. In the national capital for the first time, the family had a tough time navigating around a big city and finding a clean and hygienic place to stay. After living in a few dharamshalas, someone told them about St. Judes and they came to our Delhi centers. They took some time to adjust to the centre but eventually started mingling with others and participating in activities. Anchal enjoyed our art and crafts sessions, and even her mother started knitting and later taught other mothers how to knit as well. Anchal was with us for eight months before her maintenance started. She last visited us in November 2019 and is now a cancer survivor. Currently, Anchal is in the 8th grade and loves cooking and sketching in her free time.
Q. Who are your most long-standing partners in India? How does St. Judes collaborate with partners and stakeholders to make a meaningful impact on the lives of children undergoing cancer treatment?
A. St. Judes is dedicated to providing holistic support to children undergoing cancer treatment and their families in India. Some of our most important partners that help us achieve this include:
- Hospital Partnerships: Collaborating with hospitals to ensure that children have access to quality care during their cancer treatment.
- Corporate Partnerships: Engaging with corporate partners through Corporate Social Responsibility (CSR) initiatives to secure funding and support. We collaborate with businesses for employee engagement programs, and in-kind donations.
- Community Engagement: Building partnerships at the local community level to ensure that the needs of children and families are addressed comprehensively.
- Research Collaborations: Supporting and participating in research initiatives aimed at improving outcomes.
- Volunteer Engagement: Collaborating with volunteers and community members to provide additional support services to children and their families. We design volunteer programs that engage individuals in various capacities, including mentorship and emotional support.
- Media & Crowdfunding platforms: Raising awareness about childhood cancer among students and educators through articles on the services offered by us. We utilize media partnerships for fundraising campaigns and public outreach.
Q. How has your partnership with health insurance companies contributed to the inclusivity of cancer-affected children in the healthcare ecosystem, and what impact do you foresee from this collaboration?
A. One of the biggest achievements of our vertical, St. JudesFor Life has been its collaboration with health insurance agencies that have resulted in the launch of a first-of-its-kind initiative to offer health cover to cancer survivors. Our current partner is HDFC Egro which is providing health insurance to the Judians.
Q. How do you see the government's role in supporting organizations like St. Judes in their mission, and what suggestions would you offer to businesses and policymakers looking to make a positive impact in this area?
A. The government plays a crucial role by implementing policies, allocating funds, and creating a conducive environment for organizations like us to thrive. The government's partnership with Tata Memorial Hospital in spreading its presence in every district speaks volumes on the support offered for nonprofits in the cancer care space.
By fostering collaboration and dedicating resources to child cancer care, both the government and private sector can contribute significantly to improving the outcomes and quality of life for children battling cancer in India.
Q. What are St. Judes’ future plans and aspirations for its initiatives in India? Are there any new partnerships or expansion plans that are likely to come through in the near future?
A. By 2024 it is estimated that 32,000 patients will require the ‘home away from home’ (HAH) service. Hence there shall be a significant need for the St. Judes model in India to service the increasing patient pool and reduce drop-offs due to lack of shelter. St Judes aims to manage 1,000 family units across 14 states of India by 2025.
- The challenge is too big to be solved by one organization alone, so St Judes has initiated a new programme to nurture other NGOs and like-minded individuals who share a passion to fight childhood cancer. Through this programme, we make our expertise and learnings available to these individuals / NGOs through a structured training programme. All the SOPs and manuals that have been developed about our operations are shared to create high-quality network of HAH facilities across India.
- St. Judes for Life will seek to support the survivors in education, skilling, counselling, insurance, medical needs and employment. St. Judes for Life aims to fulfil the aspirations of St Judes, children and help them realize their potential by providing customised support.
