Haq Ki Baat - Childhood Cancer Survivors Raise their Voice
''Mr Prime Minister, why does where I was born decide whether I survive or not?''
New Delhi 3 September 2019:
September is the International Childhood Cancer Awareness month. Gold is the color of Childhood Cancer and the Gold ribbon honors children with cancer and their families fighting this dreaded disease. The colour embodies strength, courage and resilience of all the children diagnosed with cancer and their families.
This September ---
Sandip Yadav, 24 years old, an Ewings Sarcoma Survivor and Vikas Yadav, 22 years an Eye cancer Survivor whose families had to relocate to Mumbai from Uttar Pradesh in their childhood, for their cancer treatment, at the country’s premier cancer center Tata Memorial Hospital are joined by APML survivor JishnuMullick originally from West Bengal and Bhumi a >…survivor from Gujarat, as they journey from Mumbai to Lucknow and then drive with other survivors to Varanasi - a journey of 1488 kms to raise their voice for Childhood Cancer to be a Child health priority in the War against Cancer in India.
From the constituency of the HonorablePrime Minister of India Sh Narendra Modi, they are asking the PM – who’s popular talk show Mann kiBaat reaches out to the people of India “Mr Prime Minister –Why does mybirthplace have to decide whether I survive or not?”
Childhood Cancers are considered from 0-19 years of age. A newborn baby can be born with cancer. For each child who survives cancer, on average, 71 yrs of life is saved. Childhood Cancer is rare. Even in India it accounts for 4-5% of all cancers. There are 16 different types of Childhood Cancer.
50-70% Children with cancer do not survive the disease. Worldwide there is estimated to be around 300,000 new cases of childhood cancer. In India, the estimate is 78,600 new cases each year, which is an unacceptably high percentage of the global childhood cancer burden. While the survival rates of children’s cancers are 70-90% in developed countries, in India, the survival rate can be as low as 30-50%.
Low treatment & survival rates are due to:·Lack of awareness·Stigma·Poor access to care·The high cost of treatment·Lack of supportive care·Lack of infrastructure, health professionals, good protocols, quality drugs & Diagnostics
Sandeep and Vikash are team leaders of KidscanKonnect – the Teenage and Young Adult Childhood Cancer group of CankidsKidscan – a National Society for Change for Childhood Cancer in India – the country’s only NGO that works across the country and across the spectrum of support for children with cancer and families in India.
Cankids works in partnership with69 cancer centers treating children with cancer, reaching out to 97 cancer cetners in 42 cities and 22 States of India, It also has Change for Childhood Cancer in India - State projects in 10 States with MOUs with Government of Punjab and Maharashtra – as their knowledge and technical partner for childhood cancer.
Last year the Survivors worked very hard to GO GOLD Maharashtra. They spread Childhood Cancer Awareness, Lit up Gold monuments like Chatrapati Shivaji Terminal, Gateway of India, Bibi ka Makbara in Aurangabad and Shanwarwada in Pune. They led an Access to Care Car Rally across 1100 kims in 4 Divisions of Maharashtra and asked people to take the pledge that childhood cancer should be a child health priority in our War against Cancer in India. They succeeded in their mission. In February 2019, Cankids signed an MoU with the Government of Maharashtra; because of which now we are working with the Government of Maharashtra and in all cancer hospitals treating children with cancer in Mumbai & Maharashtra.
This year Vikash and Sandeep are now off on another journey.
They are going from Mumbai to Lucknow and then from there to Varanasi. Uttar Pradesh is the focus for Change for Childhood Cancer. Uttar Pradesh has the highest childhood cancer incidence in the country – at over 14500 new cases each year it accounts for almost 20% of India incidence of 76800.
Doctors, Pediatric Oncologists from all over the country are gathering for the 23rd PHOCON conference at BHU in Varanasi and at the same time NGOs who work on childhood cancer are meeting for 4th PHOSSCON on 7th and 8th September. Among other things they will deliberate on the WHO Global Initiative for Childhood Cancer that asks all LMICs to improve survival rates to 60% by 2030 thereby saving an additional one million lives. This new target represents a doubling of the global cure rate for children with cancer.
“India response is vital, and through both the Conferences the pedaitric oncology community of Dcotrs, researchers, Civil Society organizations, and patient groups, we will work out plans, next steps and working groups on all different aspects that will need to be addressed to make this happen, “ said Dr MamtaManglani, President of the PediatricHematology Oncology Chapter of the Indian Academy of Pediatrics.
In a video the Survivors have made, Childhood Cancer Survivors, Sandeep and Vikash had this to say, “We are going to our Prime Minister’s constituency. On Mann kiBaat, our Prime Minister Shri Narendra Modi Ji speaks to the citizens of the country. We really like that the leader of the country talks so openly to all of us. So today we want to talk to him - HaqkiBaat - We want to talk to him about our rights.
We want to ask:- Why do only 15000 children out of 76000 children suffering from cancer in India reach hospitals? We ask that when I had cancer, why did I need to go to 22 hospitals? Why isn’t there enough knowledge of the right hospitals and treatment in public or even the doctors? By the time they reach the right place for treatment it is already too late…. Why is it that 90% of children survive cancer in developed countries but not in India? Why should I not have access to the right medicines, right doctors & hospitals and right treatment just because of where I was born? Why should anyone suffer from unnecessary pain or a child who is in the terminal stage suffer due to lack of morphine? We have so many friends who lost everything due to cancer & its treatment and their families became even more poor & helpless than they were before. Why?
We want to talk to the Prime Minister and the Central and State Government about Our Rights – our Right to best treatment, better support and care. This is not just a Privilege - it is our Human Right.”
Driving from Lucknow to Varanasi and back via Sultanpur and Jaunpur, the Survivors will Light up Gold King George’s Medical University at Lucknow and Banaras Hindu University in Varanasi, lead a Walkathon, raise pledges of support and raise funds for children with cancer between 4th to 9th September.
Haq Ki Baat is a Childhood Cancer Survivor led Advocacy and Awareness Campaign to ensure that Childhood cancer becomes a child health priority in India which will engage all stakeholders including hospitals, nurses, parents, schools, colleges and govt. etc. The programs will include, survivor interactions, marathons, rallies, photography opportunities among others. The aim is to create large scale awareness, raise funds for cancer cure and engage stakeholders to formulate friendlier policies on Cancer Support for all kids. It may be noted that only 40% kids with cancer in India survive against survival rates of 90% in developed nations of the world.
ABOUT CANKIDS KIDSCAN CanKidsKidscan is a not for profit National Society dedicated to Change for Childhood Cancer in India. It is the only organization in India that works on all aspects that will drive this Change – from support services for families of children with cancer (age 0-21), to awareness, advocacy, stakeholder engagement, capacity building, quality care, research and impact. It works in partnership with centers treating children with cancer across the country, as well as with State Governments and all relevant stakeholders to improve Access to Care. Through the Go Gold India campaign it advocates for childhood cancer to be a child health priority in India. Its YANA –You are Not Alone – signature program aims to provide holistic support to the child with cancer and his family, from moment of detection, through diagnosis, treatment and after - Offering medical and educational financial assistance, social and psychological support for diagnosis, treatment, nutrition, accommodation and other supportive care and education for the health impaired child with cancer and his family. Cankids' Vision is – To enable global standards of survival, between 70-95%, for childhood cancer in India. - To ensure Quality of Life and Holistic Care for the child with cancer & his/her family through his/her cancer journey. - To secure the 5 Rights of health impaired children with cancer - To Health, To Education, To Childhood, To Pain & Palliative Care & the Right To be Heard. The Mission is to enable the best possible treatment, care and support for every child affected with Cancer & his family. Pledge your Support & DONATE at www.cankidsindia.orgGo Gold India -for Warriors & AngelsI would like to pledge for Childhood Cancer to become a Child Health Priority in the War against Cancer in India FACTSHEET for CHILDHOOD CANCER
A study released recently estimates that there was incidence of 3.97 lakh (+/- 20000) cases in the world of childhood cancer in the year 2015 (1)
And 43% (1.72 lakhs)of childhood cancer cases were undiagnosed globally.
Estimates that there was 76,800 (19% of world) incidence of childhood cancer in India based on IICC-3 incidence rate and India population census in 2011.( Incidence in Uttar Pradesh -highest at 14700)
Only 30% (22-23 thousand) of childhood cancer cases are estimated to reach a tertiary cancer center in india
It is estimated that 80000 children with cancer die annually worldwide.
46000 children are estimated to die in Asia every year (highest is the world)
The most common categories of childhood cancers include leukemias, brain cancers, lymphomas and solid tumours, such as neuroblastoma and Wilms tumour.
In high-income countries more than 80% of children with cancer are cured, but in many low- and middle-income countries (LMICs) only about 20% are cured (2,3)
Childhood cancer generally cannot be prevented or screened.
Improving outcomes for children with cancer requires early and accurate diagnosis followed by effective treatment.
Most childhood cancers can be cured with generic medicines and other forms of treatments including surgery and radiotherapy. Treatment of childhood cancer can be cost-effective in all income settings. 
Avoidable deaths from childhood cancers in LMICs result from lack of diagnosis, misdiagnosis or delayed diagnosis, obstacles to accessing care, abandonment of treatment, death from toxicity, and higher rates of relapse.
Childhood cancer data systems are needed to drive continuous improvements in the quality of care, and to drive policy decisions.
Howard SC, Zaidi A, Cao X, et al. The My Child Matters programme: Effect of public-private partnerships on paediatric cancer care in low-income and middle-income countries. Lancet Oncol. 2018;19(5):e252-e266.
CANKIDS MASSI (Medical & Social Support Informatics) & QCRI ( Quality Care Research & Impact) Depts Spokespeople
Poonam Bagai, Founder Chairman & Cancer Survivor Patient Advocate Member rep Childhood Cancer International- +91 9811525745 firstname.lastname@example.org