NEW DELHI: Early Sunday morning, 21-month-old Ashan, suffering from a rare genetic disorder, breathed his last at Lok Nayak Jai Prakash Narayan hospital in the capital in the lap of his helpless father, a daily wage labourer. The distraught father, Alam, said he felt all the more miserable, as his frantic effort to save his son’s life through numerous pleas of help to the Union Ministry of Health and Family Welfare and the Prime Minister’s office were ignored.
The infant couldn’t be saved despite the fact that the Centre in 2017 had set up a corpus of `100 crore to help patients and families suffering from rare diseases following a direction from the Delhi High Court.
“Last several months have been extremely difficult for me, as, on one hand my toddler was struggling for every breath and, on the other, I was not getting any hope despite knocking at every door possible,” the infant’s father said.
“I wrote to PM Narendra Modi, Health Minister JP Nadda, Health secretary and Delhi CM when I learnt that the government has come up with the National Policy for Treatment of Rare Diseases in 2017 and has set aside a fund to help needy families, but I did not get any help from anywhere.”
Ashan had been a patient of Gaucher disease — a medical condition characterised by anaemia, mental and neurologic impairment, enlargement of spleen and bone deterioration due to lack of an essential enzyme — and his family was told at AIIMS, Delhi last year that the treatment would cost them around `40 lakh per year.
“I had lost three of my other children to the disease and therefore, did not want to lose Ashan. However, due to government apathy and insensitivity, I couldn’t save him,” Alam, who earns around R8,000 a month, said.
Prasanna Shirol of the Organisation of Rare Diseases of India said that it is extremely unfortunate that the despite a national policy for rare diseases being framed last year, people in need are dying for want of financial and medical help.
“Treatment cost for a rare disease afflicting a child, weighing 10 kg, can vary between `20 lakh and `1 crore and it is extremely difficult for families to afford such a high cost. It’s sad to see that there’s been little or no intervention, so far, from either the central or the state government. I can only hope that this tragic incident will shake the authorities concerned out of their slumber and prompt them to act,” he said.
Shirol said that in last one year, 400 patients have approached the Centre seeking financial help and 20 of them have died.
Health secretary Preeti Sudan said she does not, “off-hand, remember being approached for this particular case and will have to look into the details.”“While every loss of life is unfortunate, you have to understand our constraints. Health being a state subject, the fund under the schemes can be released only on 60: 40 ratio with state governments and currently, the Director General of Health Services is in the process of laying down the norms for the release of funds to the beneficiaries under this scheme.” she said.