Childhood cancer survivor group Ugam celebrates 16th anniversary
'Support groups often float without a medical base. We didn't want that. These survivors need a system where they can return to a doctor, a team, a clinic that knows their history. That's why we built Ugam from within the hospital,' said Dr. Purna Kurkure, senior pediatric oncologist and Ugam convener said.
Kurkure said that Ugam has worked to address the taboo around childhood cancer.
'We talk about fertility, marriage, body image, topics still considered off-limits even within families. But the resistance often comes not from society at large, but from survivors' own homes. Many say they feel more rejected by their own people than by the outside world, she said.
As Ugam looks to the future, Kurkure believes the focus must shift toward broader systemic support for survivors.
'We must address the stigma and discrimination faced by childhood cancer survivors, while also reinforcing public programs, services, and health insurance coverage to support them. It's crucial to enhance medical training on survivor needs and late effects both for specialists and primary care providers. National cancer control plans must include a dedicated survivor component, and we need to expand research to better understand and mitigate the long-term challenges survivors face to ensure their sustained well-being.
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