Patient advocacy groups are awaiting clarification on whether specific conditions will be covered by the National Policy of Rare Disorders (NPRD) 2021. This comes after the Union government recently allowed patients to receive treatment for six rare diseases by including them under the NPRD. More rare diseases being included in the NPRD is a positive development, according to Prasanna Shirol, co-founder and executive director of the Organisation for Rare Disorders India (ORDI). In theory, all uncommon diseases should be prioritised rather being added one at a time. They ought to at least mention the 450 uncommon diseases that the government has listed.
The criteria for inclusion, such as approaches from patient advocacy groups, recommendations from Centers of Excellence (CoE), and accessibility to medications or treatments, must be made transparent. We must understand the criteria used to decide whether to add this. Nobody is aware of the adopted criterion. There are still numerous ailments in our country that are not covered by the coverage. Shirol told Pharmabiz that patients and patient organisations are awaiting their inclusion on the list and are unsure of how and when this will happen.
Clarity is also required regarding the administration of therapy and supporting care, therapies, and medications that are available globally but are not approved for use in India, the time frame for receiving these benefits, the workflow in each Centre of Excellence, etc. Some of the Centers of Excellence lack facilities for bone marrow transplants. He advised them to establish connections with other facilities as soon as possible and help with therapy. According to Shirol, another difficulty is that some Centers of Excellence (COEs) have enlisted patients for a specific ailment while other COEs are not doing so for unknown reasons.
The Union government announced financial support in February of this year for 120 patients with rare diseases, which was made available in accordance with the NPRD’s guidelines. Prior to this, the Karnataka government also announced that it will give financial assistance to patients in the state’s 30 districts who are economically disadvantaged and have expensive to treat “rare diseases.” The financial assistance is provided because it is not covered by the “Ayushman Bharat” Plan of the government.
