Kids suffering rare disorder, crave cure


Srinagar—While the children suffering from a rare disorder are craving proper medical care due to lack of funds, National Health Mission (NHM) is returning an unspent amount of Rs 1.62 crore to the Indian government. A scheme- Rashtriya Bal Swashtya Karyakaram (RBSK)-meant for the children suffering from rare diseases has failed to take off in Kashmir, thus making the patients and their parents suffer.
On the 7th International Rare Disease Day, which was observed at the GB Pant Hospital, Srinagar, the Lysosomal Storage Disorder (LSD) patients and the Lysosomal Storage Disorders Support Society (LSDS) expressed their anger against the government for failing to make RBSK functional in Kashmir.
RBSK scheme of the NHM aims at early detection and intervention of four problems associated with children in the age group of 0-18 years. These include defects at birth, deficiencies, and development delays including disabilities.
Manjeet Singh, a member of the LSDS society said, “No early screening of children is done. We could have controlled the diseases if children were properly screened. But diseases are detected at the final stage.”
“NHM is returning an unspent amount of Rs 1.62 crore to Indian government. They could have easily spent this amount on these children,” he said.
Mandeep claimed that his organization have approached many health ministers and made them understand that the treatment for these diseases costs lakhs of rupees. “They gave assurances but did nothing,” he said. Mandeep also claimed to have met former union health minister Ghulam Nabi Azad and briefed him about the rare diseases. “He too gave assurances and did nothing,” he said.
The parents of many LSD patients, who attended the function at GB Pant hospital lamented that they cannot arrange the money for the treatment of their children. “They have to live with this disability all their lives because neither any NGO nor the government is supporting us. Scheme meant for these children has proved a failure,” they said.
Dr Kaiser Ahmad, a well know Pediatrician and Principal Government Medical College, Srinagar said, “We don’t have data available as how many patients are suffering from LSD but as a pediatrician I know we see a sizable number of them.”
“Three of our patients are registered with Lysosomal Storage Disorder Support Society (LSDSS) and we are getting a few Enzyme Replacement Therapies from AIIMS for a couple of patients. The medicines for the diseases are costly. We cannot ask the authorities in AIIMS to give us the stock in bulk.”
Dr Kaiser said, “We have written to the NHM authorities that we need funding for some of the diseases related to children. And now we are planning to ask them for funds for patients suffering from rare diseases.”
Dr Neerja Gupta, an assistant professor of genetics at the AIIMS said, “We need the support of government of India for financial assistance. And if they don’t provide us, LSD patients will continue to suffer.”—KR

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