National Policy for Rare Diseases, 2021- Analysis

National Policy for Rare Diseases, 2021- Analysis

Introduction

The recent notification of the National Policy for Rare Diseases 2021 is pegged on this principle of inclusion.

Details of the policy

It offers financial support for one-time treatment of up to ?20 lakh,
Introduces a crowdfunding mechanism,
Creates a registry of rare diseases, and
Provides for early detection.
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.

What is a rare disease?

Rare diseases are broadly defined as diseases that infrequently occur in a population, and three markers are used —
- the total number of people with the disease,
- its prevalence, and
- the availability/non-availability of treatment options.
WHO defines rare disease as having a frequency of less than 6.5-10 per 10,000 people.
As per an estimate, there are 7,000 known rare diseases with an estimated 300 million patients in the world; 70 million are in India.
According to the Organization for Rare Diseases India, these include:
- inherited cancers,
- autoimmune disorders,
- congenital malformations,
- Hirschsprung’s disease,
- Gaucher disease,
- cystic fibrosis,
- muscular dystrophies and
- Lysosomal Storage Disorders (LSDs).

Issues with the policy

As per the Policy, diseases such as LSD for which definitive treatment is available, but costs are prohibitive, have been categorised as Group 3.
However, no funding has been allocated for the immediate and lifelong treatment needs, for therapies already approved by the Drugs Controller General of India.
- Experts point out that the costs to help already-diagnosed patients might be in the range of ?80-?100 crore annually.
If the Centre can extend the cost-sharing agreements that it has worked out with Kerala, Tamil Nadu and Karnataka, with other States too, its share of the annual costs will be halved.

Way forward

The Centre can, however, still set aside a substantial corpus to fund life-saving treatments, even as it rolls out the policy.
Doing so will not only complete a job well begun — even if not yet half done — but also cement its commitment towards the welfare of every single citizen in India.

Source: TH

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