Chandigarh: The lives of 38 children in Punjab battling a rare, life-threatening immunity disorder hang in a balance as a crucial treatment programme faces financial roadblocks.
Suffering from hypogammaglobulinemia, a condition that prevents their bodies from producing antibodies, these children require monthly immunoglobulin injections costing nearly Rs 40,000 each. However, with financial assistance discontinued, desperate families have been forced to stop or reduce doses, putting their children at grave risk.
Until 2022, patients would purchase immunoglobulin injections and submit their bills for reimbursement under Rashtriya Bal Swasthya Karyakram (RBSK), which covers 30 diseases. Although hypogammaglobulinemia was not officially included in the scheme, the Centre, at the request of the Punjab govt, began providing funds in 2016. However, funding under RBSK was discontinued after the introduction of the National Rare Disease Policy. Under this policy, the central govt designated eight centres of excellence, including PGIMER, to oversee treatment. The scheme promises Rs 50 lakh per patient for treatment.
Punjab has raised concerns over the non-payment of treatment bills for these children for the past four months. In a letter to the director of PGIMER, Punjab’s director of health services emphasised that the grant for IVIG injections is directly provided by the Govt of India to PGIMER as financial assistance for children suffering from rare diseases.
The state has urged urgent intervention, stressing that these children require regular immunity doses for survival and requesting immediate action to resolve the funding delay.
Dr Atul Kumar of PGIMER acknowledged the delay and stated that a request was submitted to the Union health ministry, with funds expected to arrive in the coming days. Explaining the reason for the hold-up, Dr Kumar noted that earlier, funding requests were submitted for individual patients, which complicated the process. To streamline approvals, PGIMER has now requested funds collectively for all enlisted patients.
Families remain helpless as their children’s health deteriorates. Capt Gaurav Preet Singh Brar, a social activist advocating for these patients, voiced grave concern over the worsening crisis. “Most of these children have gone months without their injections, making them extremely vulnerable. With each passing day, their condition worsens. If IVIG injections are essential for their survival, why has the treatment been stopped?” he said, fearing that bureaucratic delays could cost young lives.
Malkit Singh, a small-scale farmer, was forced to cut his 17-year-old son’s dose in half due to financial constraints. “We had no choice but to reduce the dosage because we simply couldn’t arrange the required money,” he said, worried about his son’s declining health.
