Panel formed to draft new policy on rare diseases yet to meet

A 10-member committee, under the chairmanship of the Director-general of Health Services (DGHS), has not held a single meeting since its formation.

Only eight weeks remain to draft and submit an improved version of a now-withdrawn National Policy for Treatment of Rare Diseases (NPTRD), yet a 10-member committee which was set up by the Centre on 16 December last year, under the chairmanship of the Director General of Health Services (DGHS), has not held a single meeting since the panel’s formation, sources have said.

A source close to the DGHS told The Sunday Guardian: “Three weeks have already passed since the committee was formed on 16 December last year to draft and submit the improved NPTRD, but the committee has not held a single meeting since then.”

“The committee has been assigned to come up with a definition for rare diseases, formulate a model for medical assistance and categorisation of rare disease patients. The Central government has also asked the committee to hold proper consultation for charting out an improved version of NPTRD,” the same source cited above said.

At present, India has more than 7 crore patients with “rare diseases” and a policy is needed to support their free treatment as there is no such policy in place now, as the Ministry of Health and Family Welfare (MH&FW) abruptly announced in December last year withdrawing the then existing NPTRD. Ironically, that version of NPTRD was introduced only a year ago by the same incumbent Central government in 2017.

According to a notification of the MH&FW, the Centre has decided to review the NPTRD policy in the light of information and updates it has received for further improvement and, therefore, a 10-member committee had been formed to look into the matter and come up with a draft NPTRD within eight weeks.

The government is already facing the Delhi High Court’s ire for its alleged lack of seriousness on the NPTRD issue. On 17 December last year, while replying to a plea filed to question the sudden discontinuation of the NPTRD, the Centre said that the then existing NPTRD was “unimplementable.” Taking a U-turn from its initial stand of forming a corpus of Rs 100 crore which could support children with rare diseases, the Centre said in court that it has not formed any such corpus yet. Although activists and experts have blamed the Centre of neglecting the cause of patients with rare diseases, the reason that has prevented the government from releasing Rs 100 crore for the treatment of children suffering from rare diseases under the now-withdrawn NPTRD is that budgetary allocation lies under the National Health Mission (NHM) that only mandates providing aid for primary and secondary care, and it does not cover tertiary care. However, rare diseases mostly fall under “tertiary care”. However, experts have said that the government lacks the will to implement a policy for rare disease patients as it is an expensive proposition and won’t translate into votes.

Prasanna Shirol, co-founder and executive director of Organisation for Rare Disease India (ORDI), told The Sunday Guardian, “When the government can implement a contentious policy like GST, there is no issue in implementing the NPTRD. The reason behind the discontinuing of the now-withdrawn NPTRD is the Centre’s lack of will.”

“I don’t see any problem in the now-withdrawn NPTRD as it was formed on the basis of recommendations of three senior committees headed by V.K. Paul who has been associated with AIIMS-DELHI; I.C. Verma of the Institute of Medical Genetics Genomics, Sir Ganga Ram Hospital, and Deepak K. Tempe associated with the Maulana Azad Medical College. The trio has great domain knowledge and they had even defined rare diseases as drugs to be administered to patients with rare diseases. Therefore, to say that the now-withdrawn policy lacked insight has no validity,” Shirol said.

“The now- withdrawn NPTRD had provisions for 60:40 financial support from the Centre and states respectively and many states had even formed the state committees; the government’s excuse that the states were not agreeing to adopt the now-withdrawn NPTRD is baseless,” Shirol added.

So far, only around 450 rare diseases have been recorded in India, the most common being Haemophilia, Thalassemia, sicklecell anaemia and primary immuno deficiency in children, auto- immune diseases, Lysosomal storage disorders such as Pompe disease, Hirschsprung disease, Gaucher’s disease, Cystic Fibrosis, Hemangiomas and certain forms of muscular dystrophies.