E-Paper
Treatment for rare diseases expensive, government support needed: PGIMER donor
Sudhir Gupta, a professor of medicine at the University of California — who provides funds worth ₹15 lakh per year to help treat 10 children suffering from PID diseases at the PGIMER
The treatment of primary immune deficiency (PID) diseases is extremely expensive in India and patients require government’s financial support to get treatment, said Dr Sudhir Gupta, a professor of medicine at the University of California — who provides funds worth ₹15 lakh per year to help treat 10 children suffering from PID diseases at the Post Graduate Institute of Medical Education and Research (PGIMER).
Over 800 children from across the country are availing treatment for the PID diseases at PGIMER. Of them, 200 are seeking intravenous immune globulin (IVIG) treatment — which requires ₹20,000 to ₹40,000-injections each month.
“Since most of the medicines and injections for the treatment of PID diseases in India are imported from other countries, the treatment cost goes up to lakhs for every patient, each year. The union and state governments should financially support patients so that they can live a healthy life,” said Gupta, who was at the institute for a conference on “Inborn Errors of Immunity”.
In October, as many as 19 patients suffering from Hypogammaglobulinemia immunity disorder in Punjab were left to fend for themselves after the state stopped funding their treatment.
Until early this year, the cost of the treatment was reimbursed by the state under the National Health Mission. But in March 2021, the Centre launched the National Policy for Rare Diseases, under which financial support of up to ₹50 lakh is provided to patients of rare diseases undergoing treatment at any of the Centres of Excellence. But once this policy was introduced, the Centre stopped funding the older scheme, leaving patients in the want of help.
The state government in November again began funding the patients as an arrangement until the new scheme is implemented at PGIMER.
In 1970, Gupta was selected as a consultant at PGIMER, but at the same time, received a job offer from the USA and moved abroad. Yet, his attachment with the Institute remained intact and he continued to support training and research work at the institute. His annual donations to the Advanced Pediatrics Centre, PGIMER, for IVIG treatment for patients began in 2009.
He is also the co-founder and president of the Foundation for Primary Immunodeficiency, established in the US to support the education, early diagnosis, genetic counselling, therapy and research of PID in both India and the US.
“Our foundation works towards educating both people and physicians about PIDs and work towards early diagnosis in children and giving them treatment to prevent deaths”, said Gupta, who completed his MD from King George’s Medical College in Lucknow and is contributing to more than eight centres across the country for the cause.
