Health experts on October 31 highlighted the need for an immediate call-to-action for the implementation of the National Policy for Treatment of Rare Diseases, stating that the patients were suffering and losing out on time.

The policy was approved by the Union Health Ministry in May last year, but it is yet to see light of the day. "With the policy now having been approved for more than a year, it has become crucial that it is implemented in a prompt manner. There has been no headway and the government is showing no urgency," Prasanna Shirol, co-founder and executive director of Organisation for Rare Disease India (ORDI), said.

"Some of the states have shared patient applications and requested for funds, but the central government has taken no action on it. The Centre was supposed to come up with guidelines to give a structure to the processing of applications and providing treatment. "This has not happened in the 64 weeks of the policy (approval) and what is worse is that they have requested for ten more weeks to formulate the guidelines. This is like adding insult to injury," Shirol said.

Some of the guidelines of the policy mention setting up of Central Technical Committee (CTC), State Technical Committee (STC) and Rare Disease Cells for treatment of patients. While these committees have been set up, specialists mention that the process for getting treatment is too complicated and tedious. A patient first has to apply to the rare disease cell directly or through a designated state health hospital. The hospital then forwards the application to the STC which in turn gives it to CTC after necessary reviews, they said.

Once the CTC approves it, the funds are released to the designated hospital under the PIP (60:40 ratio) which can then start the treatment, Ashok Aggarwal, a social activist and advocate said. "A lot of to and fro is involved in the way applications are processed. What needs to be understood here is that time is of utmost importance for rare disease patients, especially those suffering from LSDs. Thus, the process needs to be very simple like it is in the case of haemophilia- the patients just have to go to the designated centres for treatment," he said. 

Experts also expressed disappointment over the non-utilisation of Rs 100 crore corpus fund allocated under the policy. "The fund was supposed to be used for the benefit of the patients, but nothing of it has been utilised. This has been the biggest gap as the fund has now lapsed with the completion of the last financial year," Shirol added.