Issues related to classification of diseases

Group I disease

Rs 20 lakh one time only under Rashtriya Arogya Nidhi (RAN) scheme is not made exclusively for rare diseases, it is a part of an existing scheme extended; there is nothing new about it.

Generally, those requiring lung or kidney transplantation have lifetime management of huge expenditure with pre and post transplantation. This amount is not sufficient to address such needs. How will the family Below Poverty Line (BPL) get to this stage without the basic infrastructure to diagnose in government healthcare centres?

Group II disease

This responsibility of Group II disease patients is transferred to the state. Unfortunately, the majority of state governments have done little for these patients. There should have been a support system for state governments to manage these conditions in terms of funding, proper protocol and guidance, etc.

Group III disease

The whole idea of the rare disease advocacy movement started only for such conditions where no one could afford it. In fact, if the government says that the treatment is expensive, how can one expect aam aadmi to bear this burden? In this case, the government has suggested ‘crowd funding’.

Beneficiaries for such financial assistance would not be limited to BPL families, but the benefit would be extended to about 40 per cent of the population, who are eligible under Ayushman Bharat- Pradhan Mantri Jan Arogya Yojana (PMJAY). This financial support for treatment of rare diseases is proposed under the Umbrella Scheme of Rastriya Arogya Nidhi (RAN) and not under Ayushman Bharat PMJAY.