Delhi government hospital LNJP has informed the Delhi High Court that it does not have any policy on providing "prolonged or life-long treatment" for patient with rare genetic disorder claiming free of cost treatment.
An affidavit filed by the Lok Nayak Jayaprakash Hospital in response to a plea seeking free treatment for minor Afreen Ansari, suffering from genetic disorder Turner's syndrome, said the hospital does not have any policy on providing prolonged or life-long treatment for patient with rare genetic disorder, "however, such patients are treated on a case to case basis with financial assistance available from several sources".
Ansari, a class 7 student, was diagnosed with the syndrome which affects growth and leaves the victim prone to various diseases, over two years ago and has been under treatment since then at the hospital. While there is no definite treatment for disease, on the advice of experts and doctors at LNJP hospital, the child was given a trial of growth hormone therapy.
The child has to be given growth hormone injections, which cost around Rs.15,000 per month, over a period of three to four years.
As Ansari's father, works as a tailor in Trilokpuri area of east Delhi, hardly earns around Rs 7,500 per month and has no means to purchase the prescribed injections, she had received a sum of Rs.50,000 as financial assistance from Prime Minister's national relief fund and another a sum of Rs.1 lakh from the health minister's discretionary grant last year.
But the financial assistance can sustain the treatment which primarily includes growth hormones - a non-scheduled drug - only till the "next few more weeks", the LNJP hospital said.
"Till date we have already provided her treatment with growth hormone utilizing the available funds and we still have about Rs.55,000 as balance for which we will be able to provide her treatment for a few more weeks," the hospital said.
"Subsequently treatment of patients will depend upon the availability of more financial assistance for the drugs or as per policy that would be decided by the Delhi government," it said.
In India’s first judgement on medical aid for rare diseases, the Delhi high court in April 2014 directed the Delhi government to provide monthly medical treatment, free of cost, to a minor child afflicted with a rare disease (gaucher), as reported by Legally India.