Patient groups awaiting clarity on inclusion of rare diseases as Union govt lists new ailments under NPRD

Bengaluru, March 27, 2023 :

 

Patient groups are awaiting clarity on inclusion of certain ailments into the National Policy of Rare Diseases (NPRD) 2021. This follows after the Union government’s recent inclusion of six rare diseases under the NPRD, enabling patients to avail treatment for these conditions.

Prasanna Shirol, co-founder & executive director, Organisation for Rare Diseases India (ORDI), said inclusion of more rare disease in the NPRD is a welcome step. In principle, all rare diseases should be included on priority and not one by one. They should at least include those 450 rare diseases identified by the government.  

The criteria for inclusion needs to be made transparent, like approach by patient advocacy groups, recommendation by Centre of Excellence (CoE), availability of drugs or treatment. We need to know how this is being considered to be included. No one knows about the criterion being adopted. We still have many diseases which are not included in the policy. Patients and patient groups are waiting to be listed and are clueless on how and when they will be included in the policy, Shirol told Pharmabiz.
 
In addition, there is a needed for clarity on how the treatment and supportive treatment is given, therapies, and drugs available globally but not registered in India, timeline to get these benefits, process flow in each Centre of Excellence etc.

Some of the Centres of Excellence do not have facility like transplantation like for bone marrow. They should have tie-ups with other institutions and facilitate treatment at the earliest, he said.

Another challenge is that some Centres of Excellence have enrolled patients for a particular condition while other COEs are not enrolling them for reasons not known, said Shirol.

In February this year, the Union government announced an assistance for 120 patients suffering from rare diseases, which has been released in accordance with the provisions of the NPRD.

Earlier, Karnataka government too stated that it will provide monetary aid to the economically backward patients across the 30 districts in the state suffering from diseases categorised as ‘rare diseases’ that are expensive to treat. The financial support is extended as it is not covered under the Centre's 'Ayushman Bharat' Scheme. Pharmabiz