National Policy for Rare Diseases 2021

Synopsis – National Policy for Rare Diseases 2021 is a good start; it provides financial assistance for one-time treatments of up to Rs. 20 lakh, implements a crowdfunding mechanism, establishes a rare disease registry, and allows for early detection.

Introduction-

• Recently, the Ministry of Health and Family Welfare has approved the National Rare Disease Policy 2021.
• The policy provides financial assistance for one-time treatments of up to Rs. 20 lakh, implements a crowd-funding mechanism, establishes a rare disease registry, and allows for early detection.

What is a Rare Disease?

Any disease that affects a small percentage of the population is considered rare. World Health Organization defines rare disease as having a frequency of less than 6.5-10 per 10,000 people.

• Around 7000 rare disease have been identifies. In which 80 percent are of genetic origin.
• India has around 70 million people affected by rare diseases.
• Example of rare disease– Inherited cancers, Autoimmune disorders, Congenital malformations, Hirschsprung’s disease, Gaucher disease, Cystic fibrosis, Muscular dystrophies and Lysosomal Storage Disorders (LSDs).

What are the key highlights of the policy?

• First, Categorization – The policy has categorised rare diseases in three groups:
  • Group 1- Disorders amenable to one-time curative treatment.
  • Group 2- Those requiring long term or lifelong treatment.
  • Group 3- Diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy.

• Second, Financial support– Those suffering from rare diseases (diseases specified in Group 1 of the rare disease policy) would be eligible for financial assistance of up to Rs20 lakh under the Rashtriya Arogya Nidhi umbrella scheme.
  • Voluntary crowd-funding for treatment- The policy will make use of a crowd-funding mechanism to cover the cost of treatment of rare diseases.

Concern with the Policy-

• Group 3 patients are completely ignored – Group 3 patients are now at risk and at the mercy of crowd-funding due to a lack of long-term funding support.

Way forward-

State needs to adopt a load sharing model– The Centre’s contribution of the annual costs will be halved [Rs. 40- 50 crore], if it can persuade the States to adopt a load-sharing model, as a few states such as Kerala, Tamil Nadu, and Karnataka have already suggested

Source- The Hindu