Forced out of regular schooling due to their cancer treatment, childhood cancer survivors are asking for their right to education by presenting a resolution to the Union government.
A petition was framed and signed by the survivors at the 4th National Childhood Cancer Survivors conference in Delhi this week that saw 119 childhood cancer survivors from across the country share their experiences.
The petition, presented to NITI Ayog's health member, Dr V.K. Paul, was the culmination of an year-long debate on "Childhood Cancer Survivorship a Disability?" organised by Kidscan Konnect, the teenage and young adult childhood cancer survivors group of national society Cankids Kidscan, held across Delhi, Mumbai, Kolkata, Patna and Lucknow. The petition and a survivor workshop questionnaire highlighted that 85 per cent children with cancer lost out on more than one year of education. They were not permitted to take vital Board and college exams because of lack of attendance. Some lost their seats in class altogether. Many ended up losing out on cut off dates for competitive exams.
Doctors say cancer and its treatment - the drugs and radiation therapy - have late side effects that can impair a young patient's performance, including memory, mathematical ability, critical thinking and learning capability. The survivors concluded that they did not need reservations, or to be recognised as "disabled" but they did want protection to their right to education. They want ongoing schooling through home schooling and individualised education programmes as in Western developed countries, attendance and age relaxation for competitive exams and extra time for exam writing. They want that children with cancer should be recognised as children with special needs for education both during treatment and as survivors. The nation-wide debate also became a platform to highlight their fight against the disease, share stories of courage and triumph over adversity, and send a strong message that cancer can be tackled with a positive attitude and spirit.
Prabh Simran Anand was treated for ALL (blood cancer) at the age of 4. She had received radiation during her treatment. She struggled with math and as a result was unable to clear her Class 9 school exam. But the school insisted she must repeat the class and pass the exam. Today, she is studying through open school and has cleared her Class 12 exam.
"I think I have been treated unfairly for no fault of mine. Even the medical certificate and the psychologist's certificate from AIIMS where I was treated, made no difference," said Prabh Simran.
Ajay Kumar had cancer when he was in Class 9. He dropped out of school from 2003 to 2007,and cleared school through open school in 2008 and then took admission to B.Com through distance education.
But he relapsed during treatment and wasted two years of the three-year correspondence and was forced to started again in 2011. He finally cleared his BA in 2014 at the age of 27. "No one motivated me to study, there were no facilities that were offered to me, no one suggested what career I could have pursued. Now, it is too late."Aditya, 24, also battled bravely and overcame cancer because of the support of his family and friends but he had to pay a price to get his treatment completed, he missed two crucial years in school, thus, pushing him behind and eventually far from his dream to join the armed forces. Cankids chairperson Poonam Bagai said they are trying to raise a voice against the discrimination that kids with cancer encounter in school and other places during their treatment years.
"We want all survivors to get their due under the right to education, besides opportunities to make up for the lost academic years through abridged courses and exam modules," said Ms Bagai, herself a cancer survivor.
The petition prepared by the conference participants advocates extending the "Right to Education" to health impaired children with cancer during and after the treatment.
Ms Bagai said the conference was organised as part of the activities to observe September as the international childhood cancer month. The conference was held at British School, Chankyapuri, and was followed by the 10th Annual National Childhood Cancer Excellence Awards distribution at Air Force Auditorium, Subroto Park, New Delhi.
The conference aimed to build capacities of childhood cancer survivors and launch a fellowship for them and break the stigma about cancer and survivorship, she said.
A "Survivor Passport" website, a service for childhood cancer survivors, was also launched during the conference. The website carries record of survivors' treatment and its long term side effects, due dates for the periodic check-up and doctor's advice on dos and don'ts.
Childhood cancer survivors from Kidscan Konnect are also leading an advocacy campaign "Go Gold India" this September, to advocate to Central and state governments that childhood cancer should be a child health priority in India. Gold is the global colour of childhood cancer.
Ms Bagai said, "Go Gold India in its third year is moving from Amritsar to Aurangabad. A car rally to promote anti-cancer awareness will travel in September-end to different parts of Maharashtra. The proposed route of 1,250 km would cover eight districts over four days, starting from Mumbai and touching Nasik, Aurangabad, Barshi and culminating at Pune.""To mark the childhood cancer month, Chhatrapati Shivaji Terminus railway station, Mumbai, was illuminated with golden lights on September 1 and Gateway of India will be the next to go gold on September 26," she said.
During the car rally, survivors would advocate and gather three lakh pledges for childhood cancer to be a made child health priority in India with each pledge representing one child diagnosed with cancer in the world each year, Ms Bagai said.
Cankids works in over 50 cancer centres in 18 cities and 14 states which treat more than 18,000 new cases of childhood cancer each year.
In its 13 years, Cankids has worked with 28,000 families under its "YANA You are Not Alone" - programme that aims to provide holistic support, , including medical and financial assistance, to a child with cancer and his family from the moment of detection, through diagnosis, treatment and after.
Cancer kills as many as 264 children per week in India. As many as 13,726 deaths due to childhood cancer occurred in India in 2010, out of which is 0.7 percent were aged one month to 14 years. As per unofficial estimates, only about 36,000 children less than half of those who develop cancer every year make it to a cancer centre anywhere in the country.
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