The National Rare Disease Policy: A Positive Step Towards Inclusive Public Healthcare in India

By Gunjan Sharma

In April 2021, our former Union Health Minister approved the ‘National Policy for Rare Diseases 2021’, aiming to lower the high cost of treating rare diseases in India. In a bid to further the country’s agenda as a welfare state, this policy also emphasizes the increased need to focus on indigenous research and local production of lifesaving medicines, thus taking a step further in extending the umbrella of inclusive public healthcare systems in the country that takes into consideration low income and high-risk groups

There are various definitions available in the public domain to describe rare diseases. However, in general terms, a rare disease, also commonly known as Orphan Disease, is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population. It is estimated that around 6000 to 8000 rare diseases exist globally, with new rare diseases being regularly reported in the medical literature. However, 80% of the rare disease patients are affected by 350 rare diseases.

In July 2017, the Health Ministry formulated the first-ever ‘National Policy for Treatment of Rare Diseases 2017’. Though the policy was holistic and captured the complexities and hurdles associated with rare diseases, their treatment methods, and more, the policy had various implementation challenges. These factors led to establishing an expert committee to address these issues and form a revised policy.

The new policy plans to create a hospital-based National Registry, which ICMR will initiate. The registry aims at yielding the much-required epidemiological data for rare diseases. A provision for financial support up to ?20 lakh under the umbrella scheme of Rashtriya Arogya Nidhi (RAN) is proposed for the treatment of those rare diseases that require a one-time treatment (diseases listed under Group 1 in the rare disease policy).

The financial assistance is limited to BPL families, but the benefit will also be given to around 40% of the population eligible to be covered under the Pradhan Mantri Jan Arogya Yojana. Financial support for the treatment of rare diseases comes under the umbrella scheme of the Rashtriya Arogya Nidhi (RAN) and not under the Ayushman Bharat PMJAY. Besides, the policy also envisions a crowdfunding mechanism, which invites corporates and individuals to come forward and extend financial support through a robust IT platform for the treatment of rare diseases.

The policy also recognizes the importance of early screening and prevention, thus, focusing on early detection through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres (DEICs), as well as counselling for those who are high-risk patients. Nidan Kendras will also support the screenings set up by the Department of Biotechnology.

In a bid to further strengthen the existing tertiary healthcare infrastructure in the country, under this policy, eight healthcare facilities have been categorized as ‘Centres of Excellence’ (COEs). They will work towards the prevention and treatment of rare diseases. Basis a gap analysis, these centres would also be provided with one-time financial support up to a ceiling of ? five crores to procure advanced equipment. Thus, it strengthens patient care services like screening, diagnosis, prevention (prenatal diagnosis) of rare diseases. Monitoring processes have been taken into account for the disbursal of such funds, with Centers being mandated to decide the treatment and fund allocation on rare diseases cases within 02 weeks of receiving a new application.

This holistic new policy has created new hope among the patients suffering from rare diseases, such as Gaucher, Fabre, Pompe, and other rare blood and enzyme disorders, with children comprising a large percentage. For the effective implementation of the policy, the central and state governments must work in sync with each other, sharing responsibilities for swift adoption and rolling out of the same.

In a developing country like India, where the burden on the public healthcare system is relatively high, immediate implementation of the plan alongside demarcation of clear steps towards the treatment and prevention of rare diseases is the need of the hour. To implement the policy effectively, the government should also connect with various rare disease patient groups in India who are actively working towards providing better care to these patients. Their experience in dealing with the patients can lead to suggestions and recommendations that would be beneficial to the patients and will also help in better implementation of the policy. An inclusive public healthcare policy such as the NPRD is of utmost importance if the country ensures that low-income and high-risk patients do not suffer due to the lack of inclusivity in the public healthcare system.

The columnist is Sr. Associate- Public Policy, Chase India. Views expressed are the author’s own.