Project PICASSO of Indian Cancer Society
As early as 1951, Dr. DJ Jussawalla and Mr. Naval Tata started the first voluntary, not for profit, national organization, the Indian Cancer Society (ICS). It was initiated to spread awareness about cancer, initiate early detection, promote cure and survivorship of those affected with this disease.
Survivorship and rehabilitation vertical of ICS has developed and initiated the survivorship module PICASSO (Partnership In CAncer SurvivorShip Optimization) in 2017. Taking inspiration from the ACT clinic at Tata Memorial Hospital and involving Ugam (support group of survivors), PICASSO is holistic rehabilitation module being implemented in partnership with pediatric cancer units. The objective is to facilitate the pediatric cancer units to start hospital based ACT Clinic where pediatric oncologist does medical assessments and psychosocial care is taken care of by ICS for holistic (medical and psychosocial) care of survivors. The purpose is to decrease the loss to long term FU of survivors, to improve their quality of life by innovating and developing effective rehabilitation programs, and to facilitate diverse networks of support groups that could facilitate the integration of survivors in the mainstream of society. Through five partners, 697 survivors have been enrolled in PICASSO from November 2017 till Aug 2019.

Advocacy Initiatives

Childhood cancer survivors are the best advocates for their cause. As a survivor rightly said “Nobody cares about me more than me ”.44 Their voice can amplify gaps in their care and galvanize efforts in service, policy and research. Nearly two decades ago, the development of the National Action Plan for Childhood Cancer in USA brought together several stakeholders including civil society, parents and survivors.45 They specifically made recommendations for long-term care and survivorship including identifying concerns, developing educational materials, receiving care, setting standards and developing a database. International and National childhood cancer survivor groups have continued to advocate for change in policy and service.46,47 Similar recent efforts have been made by survivors of childhood cancer in India, especially Kidscan Konnect (KCK) from Cankids and Ugam, which is part of ICS.

Cankids KCK

Cankids set up the childhood cancer teenage and young adult survivor group called KCK in 2006 (https://www.facebook.com/kidscankonnect.in/). Today KCK has a membership of over 900 survivors, with 10 chapters in cities across India. Childhood cancer survivors join as members (age has to be 13 years and above) and are groomed to be chapter heads, leaders, and then mentors.
Cankids KCK advocacy initiatives are at hospital, state, national and international level. At hospital level, it advocates for survivorship groups, regular survivor forums, and dedicated survivorship clinics (Figure 2). Survivor coordinators cum data managers are provided for the P2L Clinics. At state and national level, the KCK group actively engages in creating awareness and organizes and participates in access to care camps and programs, scripts and enacts its own street plays for patient care and survivorship issues. Survivor Week is celebrated in June each year. Four national survivor conferences have been organized in 2010, 2011, 2015 and 2018. In 2016-17 national debates on the Right to Education were organized as survivors campaigned for inclusion in the Persons with Disability Act, and a petition was submitted in September 2017 to the Government of India. On the international level, KCK members are on the Asia Childhood Cancer Survivor Network Management team and are active members and participants in the Childhood Cancer International Survivor Network and regularly present on developments on survivorship in India. In 2019, Ritu Bhalla Girl Child Cancer Ambassador of India, gave the Opening address at the World Health Organization South East Asia Regional Office Workshop to accelerate cancer prevention and control in South East Asia held in New Delhi on 25th -26th June 2019 (Figure 2).
ICS and Ugam
On the 7th of June 2009 on the occasion of Cancer Survivors Day, a small group of motivated childhood cancer survivors came together with a focused vision of self-empowerment. Ugam was then born and formally launched under the survivorship banner of ICS. Ugam means “To Rise”, underscoring the determination of childhood cancer survivors, to rise above all obstacles in life and be victors https://www.indiancancersociety.org/events/ugam.aspx.
Subsequently their activities over a decade have included participation in International Relay For Life (a franchised cancer awareness event of American Cancer Society) Mumbai Marathon (Figure 2), awareness activities, sharing stories and giving hope to the parents and children with cancer who are undergoing treatment and residing at home away from home such as St Jude Child Care centres. Ugam members have initiated advocacy for providing health insurance to survivors of childhood cancer and will help survivors to get the insurance cover rightfully. Another area of concern is matrimonial prospects for survivors who are now adults and willing to settle down in family life but face societal resistance. Ugam is a torchbearer and advocate for these burning issues at societal, non-governmental and governmental level.
Ugam is also an active member of the Asian network of survivors under the umbrella of Childhood Cancer International (CCI) as. Ugam members have been regularly awarded fellowships since 2013 to participate in Annual conference of CCI alongside the Annual conference of International Society of Pediatric Oncology.

Research

Much of our knowledge has come from research on large cohorts of childhood cancer survivors who have been followed-up meticulously and painstakingly to gain insight into their health problems and psychosocial issues.48 Till recently similar cohorts have not existed in low-middle income countries. The growth of the Indian Pediatric Oncology Group (InPOG) has provided the platform for multicenter co-operative group research in India.49One of the earliest studies in the InPOG portfolio has been InPOG-LE-16-01 study. The aim of the study is to establish a multi-centre (ultimate goal – nation-wide) registry of children completing treatment for childhood cancer and in complete remission for a period of at least 2 years. As of April 2020, this study is open in 14 centres and has recruited 1801 patients. Future plans include growing this cohort by inviting more centres to be part of this study and continue enrollment in existing centres. In parallel, several research proposals are in development, which would aim to answer the first generation of research questions using childhood cancer survivors of Indian in this cohort.
With the changing role of patients in health research, KCK survivors are also leading research. Such involvement ensures that relevant questions are answered, and study results are disseminated and utilized. Currently four survivor led research projects are underway including Passport2Life, fertility status , nutrition status and stigma, bias and empowerment study in the girl childhood cancer survivor

Conclusion

After a slow start, there is now increasing momentum in work done being for childhood cancer survivors in India. Although there remains a long way to go, this progress is happening on multiple fronts, has engagement of various stakeholders, and there are early signs of collaboration. All of these portend a promising future.
Conflict of Interest: All authors declare that they have no conflict of interest
Consent Statement: All the individuals in Figure 2 have given permission to use their image in the manuscript.