All set for the festive season, and waiting for Secret Santa to bring you the best gifts? While we wait for our Santas, around 76,500 children across the country are fighting the battle between life and death each year. That is a whopping 26 per cent of the global incidence of childhood cancer.
There is a world of difference between adult cancer and childhood cancer, says Mukul Marwah, chairman at CanKids, a not-for-profit society dedicated to bringing change in the way childhood cancer is dealt with in India. The survival chances for kids afflicted with cancer in India are as low as 30-40 per cent, as against the 90 per cent in many developed countries. This was one of the reasons why CanKids came into being in 2004.
The organisation recently kick-started its Festive Season Campaign, calling for donations, through its Project Ricky which has the support of Zimbabwean cricketer Carlos Brathwaite.
The idea behind setting up CanKids was to enable the best standards of treatment, care and support for children with cancer as also for their families. Barely 20,000 childhood cancer patients even make it to the hospital for treatment every year, Marwah tells us, and even the ones who do, do not necessarily get the right and complete treatment. The reasons are many and varied: from unawareness to illiteracy, lack of funds, and logistical challenges. From the moment the illness is diagnosed, there are n number of issues that a cancer patient and the family goes through, and “matters only get worse when the patient is a child,” Marwah says.
Survivorship, relapse, bereavement, financial aid and government schemes that can be availed — thousands of patients would be more than glad to get some help through the toughest phases of their lives. “We partner with cancer centres, hospitals and state governments to provide support to families, build capacities, promote quality care, research and facilitate stakeholder engagement by putting the child and its family at the centre of our entire programme,” Marwah explains.
The very first initiative that CanKids launched in this direction was YANA - You Are Not Alone. “Forget the ones coming from rural regions, even people like you and me can get confused in government hospitals. We have our teams in place for such people to be guided through the procedures at hospitals. The one thing that we have achieved through this is a reduced rate of abandonment. Given the prolonged duration of cancer treatment, the rate of abandoning treatment in India is quite high,” he says.
BRIDGING THE GAPS
When a kid is diagnosed with something as grave as cancer, it has serious consequences — on his/her life and that of the family. Paramount among the concerns is the immense amount of money involved in the treatment and medication. Next in line is living arrangements in the town/city of treatment — which in most cases is away from the city of residence for most patient families. Other crucial aspects are the child’s education being hampered during the course of treatment.
CanKids’ operations are thus designed to cater to all of these needs. “Counselling is very critical in childhood cancer care, so is nutrition. A holistic approach is adopted at CanKids to give the children the attention they need,” Marwah explains, adding that the organisation soon approached state governments to work in sync with them. “They have the infrastructure and we had the low-cost model. We provided our expertise at various hospitals around 2004-06,” he said. Having begun with AIIMS in Delhi, CanKids now has its presence in 85 hospitals across the country. A social support team at the hospital acts as a link between all the stakeholders involved.
OTHER INITIATIVES
Despite these efforts, some areas of concern still remained. Patients’ families often had nowhere to live and no money to spare. That’s when CanKids started HAH - Home Away from Home. They built a few shelters in cities for families to reside in and even arranged for nutritionists, teachers and helpers to visit these homes and help the families manoeuvre through it all.
In 2012, CanKids started a CanShaala with the MCGM (Municipal Corporation of Greater Mumbai) in Mumbai’s Parel. Kids with cancer are taught here to help them cover up the syllabus they have missed during treatment and ensure their smooth transition back into mainstream educational systems.
The organisation also ties up with government institutions like ASHA workers and Anganwadis to help kids diagnosed with cancer reach the right places for effective treatment. Further to it, sensitisation workshops are also undertaken for hospital staff with regard to dealing with childhood cancer. One such workshop will be held in Mumbai on today (December 17) and in Pune next month.