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.