SC notice to govts over rare diseases policy

Namrata Devikar
Tuesday, 5 February 2019

While the National Policy for Treatment of Rare Diseases was drafted in 2017, only six states have formed the mandatory state-level committee to address the needs of patients with rare diseases.

PUNE: Hearing a PIL filed on the National Policy for Treatment of Rare Diseases (2017) by the Organisation for Rare Diseases India (ORDI), the Supreme Court has issued notices to the Central Government and all state governments and Union Territories (UTs) to report what steps they have taken till date under the policy. 

While the National Policy for Treatment of Rare Diseases was drafted in 2017, only six states have formed the mandatory state-level committee to address the needs of patients with rare diseases. To raise awareness about issues associated with rare diseases, the ORDI filed the PIL seeking to draw attention of the court to the issue. 

In December 2018, Sakal Times, in a three-part series, highlighted the need for effective implementation of the rare disease policy and the absence of the state-level committee in Maharashtra. The policy is important for patients with rare diseases such as auto-immune diseases, lysosomal storage disorders including Pompe disease, Hirschsprung disease, Gaucher’s disease. The implementation of the policy will help such patients get cheaper and quicker treatment, which is expected from all states. 

Speaking to Sakal Times on the issue, Prasanna Shirol, Co-Founder and Executive Director of ORDI, said the Court has taken a positive step but we have miles to go. “By the end of last year, the Central Government submitted to the Delhi High Court that the policy needed to be reframed. This meant there would be further delays in financial support to patients with rare diseases. The Central Government also issued a notification during the same time, stating that the existing rare disease policy will be in abeyance till the formation of a revised policy,” said Shirol. 

He added that this notice by the Supreme Court comes as a ray of hope and the authorities now will have to respond to the Court. The PIL sought that the state-level committees for the rare diseases should identify hospitals in their zones and start treating such patients and provide supportive care as per the National Policy for Treatment of Rare Diseases (2017).

According to the Policy, a rare disease is a health condition of low prevalence that affects a small number of people as compared with other prevalent diseases in the general population. 

It is estimated that 6,000 to 8,000 rare diseases exist globally with new rare diseases being reported in the medical literature regularly everywhere.

However, 80 per cent of all rare disease patients are affected by approximately 350 rare diseases. 

TIME TO ACT
- While the National Policy for Treatment of Rare Diseases was drafted in 2017, only six states have formed the mandatory state-level committee to address the needs of patients with rare diseases. 
- To raise awareness about issues associated with rare diseases, the Organisation for Rare Diseases India filed the PIL seeking to draw attention of the Court to the issue.
- According to the Policy, a rare disease is a health condition of low prevalence that affects a small number of people as compared with other prevalent diseases in the general population.

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