Type 1 diabetes (T1D) is an autoimmune disease characterized by the destruction of insulin-producing pancreatic beta cells leading on to absolute insulin deficiency and high blood sugar with its adverse effects. Although T1D can occur at any age, most cases are diagnosed during childhood or adolescence. According to the recent data from the International Diabetes Federation (IDF), there were over 1.1 million children between the ages (0-19) years in 2019 (data from International Diabetes Federation; 2019 Atlas). Out of this 1.7 lac, children and adolescents with T1D are in India alone. There are more than 1500 children/adolescents registered in Pediatric Diabetes Clinic at Advanced Pediatric Centre, PGIMER, Chandigarh.

Treatment of children (or adults) with T1D involves at least 4 insulin injections per day with blood sugar testing before every injection which must be done life-long to survive. So, the treatment regimen includes a total of eight needle pricks required to control blood sugar optimally. The parents must inject the insulin dose based on blood sugar value, the type and amount of meal to be taken, and kind of activity anticipated/exercise over the next few hours. Despite this strict and stressful regimen, the glucose control in most of the children/adults remains far from optimal. There are persistent blood sugar fluctuations daily with frequent low and high sugars directly affecting the day-to-day work (schooling/physical activity etc). Due to poor sugar control over the long term, several complications can occur, including blindness, kidney failure, loss of sensation, hypertension, heart problems etc.

In India, the most crucial reason for the poor treatment and outcome of children/adults with T1D is the cost of treatment (INR 4,000-5,000/month) which is recurring and lifelong. A large number of parents with children having T1D at PGIMER are not able to afford treatment and develop issues of weak growth, repeated hospitalizations due to acute complications, poor school performance, personal and family stress, complications of diabetes at a very early age and rarely death due to inadequate/unaffordability of treatment.

We are the parents of the children with type 1 diabetes (T1D) who are getting treated in Advanced Pediatrics Centre (APC) at PGIMER, Chandigarh. We receive support from some health professionals, social workers, volunteers etc. We felt that it is vital to form a voluntary organization/Society/Association for the welfare of these children/adolescents with T1D. We decided to raise and register an association with the name “Association for Children with Type 1 diabetes (ACT for Diabetes)” (ACT-D). The ACT-D shall be a voluntary, not-for-profit organization to serve for all the poor and needy children with T1D irrespective of caste, creed or race in rural, urban and slum areas. The ACT-D plans to work in all the districts in the State of Haryana, Punjab and U.T. Chandigarh and neighbouring states. The association (ACT-D) is registered in the office of Registrar of Firms and Societies, UT, Chandigarh with registration no 4682 since 19th June 2017.

We work as a support system for distressed families who are not able to provide appropriate treatment to their children with T1D. We try to help them financially, socially and provide moral support with the help of our donors and volunteers. We take up the issues of these children with concern government authorities and practice advocacy for these children at all possible levels.