Empowering childhood cancer care by cultivating hope and support with St. Jude

Prittle Prattle in conversation with Mr. Anil Nair, CEO, St. Jude’s India ChildCare Centre

St. Jude India ChildCare Centres offer a nurturing haven for children undergoing cancer treatment, providing them with a comforting environment akin to a ‘home away from home’. Our comprehensive services encompass safe and secure accommodations, education, convenient transportation to and from treatment facilities, counseling sessions, skill development opportunities for parents, and all-encompassing nutritional support. Our services extend to vulnerable children and their families hailing from rural or semi-urban regions who are compelled to travel to metropolitan areas in pursuit of optimal cancer care. Over the past 15 years, we have grown from a single centre caring for eight children in Mumbai to 11 cities with 41 centers that look after over 500 children. We are now present in 11 Indian cities, including Mumbai, Kolkata, Hyderabad, Jaipur, Chennai, Vellore, Guwahati, Delhi, Varanasi, Vishakhapatnam, and Muzaffarpur.

Can you tell us about the mission and vision of St. Jude India Childcare Centres and the significant milestones achieved during the past 15 years since its inception?

Taking our commitment further, we have established St. Judes for Life – started in loving memory of Mrs. Rani Vicaji. Keeping with the organization’s enduring adage, ‘Once a St. Judes child, always a St. Judes child’, this progressive endeavor empowers our survivors by providing them with personalised support, facilitating their educational pursuits, safeguarding their well-being, and guiding them towards a prosperous future. The St. Judes for Life programme serves as a solid rock of support for Judians from the time of their enrolment on completing five years since diagnosis of cancer, till they are independent and self-sufficient, and beyond.

Furthermore, in November 2021, we collaborated with Star Insurance to form an extraordinary collaboration. This trailblazing initiative provides comprehensive health coverage to children who have overcome cancer. St. Judes is at the forefront of fostering inclusivity for children impacted by cancer within the healthcare ecosystem, exemplifying their unwavering commitment to this noble cause. All 732 Judians enrolled with the St. Judes For Life programme are covered under the insurance.

Childhood cancer is a devastating reality affecting thousands of young lives in India. How has St. Jude India ChildCare Centres been providing holistic support to these young patients and their families, and how has it impacted their well-being?

According to the World Health Organization (WHO), India accounts for at least 20% of the worldwide childhood cancer burden, with about 75,000 children diagnosed each year.

Childhood cancer is an important health issue in India, claiming the lives of thousands of children every year. Cancer is increasingly impacting children, making it critical for us to comprehend the scope of the problem and handle it effectively. According to the Indian Council of Medical Research (ICMR), childhood malignancies account for 7.9% of all cancers in India. Leukaemia, brain tumors, lymphomas, and bone tumors are the most frequent forms of childhood cancers in India. However, according to an Indian National Cancer Registry Programme (NCRP) report, juvenile malignancies in the 0-14 age range accounted for 4.0% of all cancers. 

Regardless of the type of cancer a child has or their socioeconomic standing, St. Judes offers comprehensive care to those children and their families. We incorporate amenities such as a kitchen facility that have individual stoves and kitchen utensils, where parents prepare meals based on their child’s nutritional needs and taste preferences. Families are given nutritious rations and supplies that we replace every week. There are common bathrooms with clean and hygienic toilets and bathing areas, as well as a place for the families to wash their clothes. We are fastidious about preserving hygiene at the centres and implementing strict infection control practices. Besides the living facilities, we also provide transportation between the centres and the treatment hospitals we also believe that our children and families need emotional support for which we offer extensive counselling services.

St. Jude India ChildCare Centres recently entered into a collaboration with Tata Memorial Hospital and ACTREC. Can you share the goals and objectives of this collaboration and how it will benefit the beneficiaries over the next 20 years?

Right from our inception, our founders, Shyama and Nihal Kaviratne, along with a committed cohort of volunteers, have formed collaborative partnerships with esteemed medical institutions such as Tata Memorial Hospital, AIIMS in New Delhi, Tata Medical Centre in Kolkata, and the Dr. B Borooah Cancer Institute in Guwahati, as well as multiple cancer hospitals across India.

St. Judes India, in collaboration with the Advanced Centre for Treatment, Research, and Education in Cancer (ACTREC), a part of the Tata Memorial Centre, is set to launch a massive 12-story venture on the ACTREC campus in Kharghar, Navi Mumbai. With this project, our goal of providing families with necessary holistic care such as housing, education, nutrition, skill enhancement, counselling, and transportation services remains unchanged but will be executed at a much larger scale, reaching 34,000 families.

Like all our centres, this one will also foster a loving environment, which not only strengthens children’s resilience in the face of health adversities but also cultivates their capacity for a robust and promising future, enriched with forward-thinking skills.

As advancements in healthcare continue, what are the new breakthroughs in cancer treatment that offer hope for the future cure of cancer, particularly in children?

Over the last few decades, significant advances in cancer treatment have ushered in a new era of care. The convergence of focused therapeutic interventions, innovative methodologies, technological discoveries, and advancements in conventional therapies such as chemotherapy has transformed the landscape. This continuous research trajectory has the potential to not only instill optimism in families but also to improve the overall quality of life for a broader range of cancer patients. Artificial intelligence, DNA sequencing, and precision oncology have emerged as invaluable techniques used by researchers to improve both the diagnosis and treatment of malignant illnesses. The sequencing of DNA from over 12,000 malignant tumors was a landmark achievement that revealed vital insights.

Strategic collaborations through the World Economic Forum have harnessed nascent technologies like artificial intelligence (AI) and machine learning in the Indian setting to bring an evolution in cancer care. For example, AI-based risk profiling, which aids in the early detection of common malignancies such as breast cancer as well as, AI-powered X-ray analysis covers key diagnostic gaps in areas where imaging professionals may be unavailable.

The paradigm of personalized treatment extends to the meticulous tailoring of therapy dosages, particularly pertinent in pediatric cases. This nuanced approach often translates to mitigated risks of adverse effects, optimizing the delicate balance between treatment efficacy and minimizing potential discomfort. The principle of “less is more” has worked by the sensible lowering of treatment intensity, an intervention that has a significant impact on the quality of life during and after treatment. It is crucial to emphasize that, regardless of the treatment plan, the control of side effects remains a priority.

Childhood cancer research has shown promising trends in recent years. Could you provide an overview of these trends and potential breakthroughs that offer hope for better outcomes for young cancer patients?

Indeed, recent years have witnessed encouraging developments in childhood cancer research, illuminating a path toward improved outcomes and renewed hope for young cancer patients.

The expansion of pediatric clinical trials offers young cancer patients access to cutting-edge treatments and therapies, allowing them to benefit from the latest breakthroughs and contribute to the advancement of medical knowledge. The evolving landscape of childhood cancer research is marked by significant strides in precision medicine, immunotherapy, genomics, early detection, and collaborative efforts. These trends underscore a future replete with renewed hope and improved outcomes for young cancer patients.

Hospitals, pharmaceutical corporations, rehabilitation centres, and palliative care providers could hopefully develop alliances to deliver full cancer treatment packages. These collaborations result in a win-win situation for all stakeholders: businesses are able to control their expenditures and profit from shared savings, while patients benefit from coordinated, effective, and inexpensive care.

Exploring and implementing value-based healthcare (VBHC) models in cancer care might be a powerful method for managing rising healthcare costs, particularly in countries with significant healthcare inequities such as India. It necessitates strong coordination among various healthcare providers as well as a patient-centered approach. With proper implementation, VBHC can improve the quality of life for cancer patients, lower the financial burden of cancer care, and create viable business models for healthcare organizations.

Cancer not only affects physical health but also profoundly impacts mental and emotional well-being. How do St. Jude India ChildCare Centres address the importance of education strategies and psychological treatments in providing comprehensive care to these young patients and their families?

The curriculum of St. Judes is methodically designed to fit the different backgrounds, geographies, instructional languages, and age groups represented by its student body. We lay emphasis on creating an inclusive educational framework that effectively serves all age groups. While the basic subjects remain consistent, students are encouraged to learn at their own speed and degree of ability.

An activity-based technique is central to our pedagogical approach. Group discussions, hands-on experiments, model creation, visual aids such as charts and posters, role-playing, interactive worksheets, and homework assignments all contribute to the multidimensional learning experience. The use of theme-based learning creates an engaging and enjoyable educational experience and ignites curiosity.

In addition to cognitive growth, the curriculum includes a wide range of artistic, dramatic, and computer-based activities aimed to broaden students’ knowledge and stimulate creativity. The educators, who also serve as Centre Officers, are skilled teachers, who are well-versed in teaching multi-grade, multi-level classrooms that are firmly rooted in activity-based education.

The cultivation of emotional well-being is an important aspect of the St. Judes mission. This includes a variety of celebration events, skill-building activities, and educational endeavors for both children and their parents. Recreational outings, magic shows, group birthday celebrations, and indoor and outdoor games give families a deserved break from routine and promote familial interaction. We celebrate all cultural and traditional celebrations like as Diwali, Rakhi, Eid, Holi, and Christmas, as well as regional holidays and other occasions such as Republic Day, Mother’s and Father’s Day, World Cancer Day, and World Health Day, with exciting, inclusive and participatory events at all our centres. 

St. Judes emphasizes the importance of counselling, recognizing the critical function of emotional support in the face of medical obstacles. This channel is critical for both parents and children as they navigate the emotional difficulties of the diagnosis and treatment path. Our highly-skilled counsellors bring experience and practical expertise to create a safe environment for open and truthful dialogues. Themes ranging from worry and dread to hope, and future prospects are discussed, building a trusting and understanding environment among children, parents, and counsellors. Because of this support, our families feel empowered, which fortifies them with emotional resilience and a positive outlook.

There are often misconceptions and myths surrounding childhood cancer. Can you help bust some of these myths and shed light on the realities of the disease and the comprehensive care needed to support the affected children?

Dispelling myths and shining a light on the realities of pediatric cancer are undoubtedly critical to creating awareness and providing comprehensive care for affected children. Let’s discuss a few typical myths and their related realities:

Myth 1: Childhood cancer is incurable

Childhood Cancer is highly curable, with a cure rate of 80 percent. Most cases of childhood cancer can be cured if diagnosed early, and given appropriate treatment, which is supplemented with holistic care including a hygienic place to stay, a nutritious diet, and a happy and positive environment.

Myth 2: Childhood cancer is contagious
Cancer is a non-communicable disease. It is important to make people understand that childhood cancer is not contagious, making it completely safe for other children to socialize with children with cancer and cancer survivors. We need to break the stigma around this. We need to make others understand for example, that children with cancer may need to wear masks not because the cancer is contagious but because they need to self-protect as they have weakened immune systems due to chemotherapy and radiation therapy, and are highly susceptible to secondary infections. Sometimes, they may be severely immuno-compromised and may need to be temporarily isolated from large groups by their caregivers.
Myth 3: Childhood cancer survivors have a shorter life expectancy
Cancer survivors can lead normal lives, though some can be at higher risk for late side effects and secondary cancers. Studies have shown that a reduction in life expectancy depends on the promptness of diagnosis, the appropriateness of cancer treatment, and the nature and severity of the subsequent late side- effects. Besides, the quality of post-cancer care, specifically regular follow-up is vital and something that we emphasize with our families.
Myth 4: Childhood cancer patients can never lead a normal life
Most childhood cancer survivors go on to lead healthy, normal lives, just like their peers. Post-treatment, childhood cancer survivors level up with their peers in physical growth and development as well as mental and emotional well-being. If they are surrounded by a circle of care that includes a supportive network of family, caregivers, teachers, and friends, survivors can effectively reintegrate into society and resume normal school life and activities after treatment.
Myth 5: Childhood cancer survivors are socially challenged and generally have poor interpersonal and relational skills.
At times, there is a likelihood of childhood cancer survivors exhibiting behaviors associated with Post Traumatic Stress Disorder (PTSD). However, we must be vigilant to not label children. There is much evidence that suggests that with good psychosocial support programs and services children with cancer and childhood cancer survivors can learn coping skills and build resilience successfully.
Myth 6: Childhood cancer survivors do not require follow-up care
Regular follow-up care is of prime importance for childhood cancer survivors. Being at higher risk for secondary cancers or chronic health conditions related to their initial cancer therapy, it is critical to monitor young children on a regular basis to ensure that they remain healthy, cancer-free, and free of long-term chronic side effects.
Myth 7: Never tell children directly that they have cancer
It would be practically impossible to withhold their condition from children once they have a childhood cancer diagnosis. Empowering them to take charge of their own health would garner cooperation from them, stealing their determination and grit to fight this deadly disease.
St. Jude India ChildCare Centres has been a home away from home for many young hearts battling cancer. Can you share some heartwarming to your organization’s impact on the lives of these young patients and their families?
St Judes has 41 centres spread across 11 Indian cities. The facility helps families who have to travel to metros to find the right treatment for their children.  All centres follow a holistic model of care where every family gets the best chance to beat the disease. Over the past 15 years, we have built deep long-lasting relationships with our children and have several success stories which we are immensely proud of.
Take for instance seventeen-year-old Pradip Pal who recently passed his Higher Secondary Examination (HSE) in first division from the West Bengal Board.
Pradip came to our Premashraya Centre in Kolkata in 2018 with his parents. His father is a farmer and his mother is a homemaker. They knew no one in Kolkata and were very thankful to have found a place like St. Judes to stay in this new city. Pradip underwent treatment for Hodgkin Lymphoma at Tata Medical Center, Kolkata, completed chemotherapy, and went back home in October 2018. He now visits for his routine check-ups. Pradip not just fought courageously against cancer but also worked equally hard to catch up on the school work he missed during his treatment. He diligently studied with our teachers to learn as much as he could. After returning home, he gave his all to his studies and passed all his exams with flying colours.
Another example is 18-year-old Rutuja Pawar who is currently pursuing BSc in nursing. She wants to become a nurse. Rujuta came to our Cotton Green Campus in 2010 from Solapur in Maharashtra when she was diagnosed with cancer. Her father is a daily wage laborer and her mother is a homemaker. She underwent treatment at Tata Memorial Hospital, Mumbai.She is a bright girl, and would happily participate in centre activities and studied hard. If there is one thing she took back from us, it was the spirit of ‘never giving up’ something she still practices.
With centers in 11 cities across India, how does St. Jude India Childcare Centres plan to expand its reach and impact in the future to support even more children in need?
It is estimated that by 2024, roughly 32,000 patients will require the ‘home away from home’ (HAH) service. Hence there shall be a significant need for the St. Judes model of holistic care in India to service the increasing patient pool and reduce drop-offs due to lack of shelter. Our aim is to manage 1,000 family units across 14 states of India by 2025.
However, this challenge is too big to be solved by one organization alone. Keeping that in mind, we have initiated a 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 a high-quality network of ‘Home Away From Home’ facilities across India
Lastly, could you share your vision for the future of St. Jude India Childcare Centres and how the organization aims to continue making a difference in the lives of children battling cancer and their families?
St. Judes is dedicated to providing comprehensive care in order to give children the best chance of overcoming paediatric cancer. Our 41 centres across 11 cities in India, provide constant care to over 516 children and their families. Our programme – St. Judes for Life (Founded in Memory of Mrs. Rani Vicaji) ensures the well-being of our alumni, or Judians, by providing timely and personalized support whether it is in academic, physical, or emotional development. We deliver focused interventions that nurture, coach, and empower these individuals by leveraging our knowledge and, when necessary, cooperating with skilled partners. We hope to encourage self-reliance by providing a strong and supportive atmosphere, allowing students to become influential and constructive members of society. The annual leadership camps that serve as transforming platforms are central to the St. Judes for Life concept. These camps promote self-discovery, interpersonal bonding, in-depth investigation of leadership ideas, team-building exercises, and stimulating debates through deliberately crafted activities. These efforts jointly provide our Judians with vital skills and views, effectively preparing them for life beyond cancer.
Our centres, which embody our essential principle, “Once a St. Judes child, always a St. Judes child,” are always accessible to our children who return to our nurturing sanctuary whenever they require follow-up hospital visits. This concept assures a constant thread of care and direction, reinforcing the idea that our dedication to their well-being extends beyond medical treatment and into every aspect of their journey.
In essence, St. Judes’ persistent dedication to our patient population demonstrates our steadfast commitment to improving the lives of childhood cancer survivors and building a brighter, more promising future for each and every one of them.

Prittle Prattle News composed this article as an Interview.
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