National Policy for Rare Diseases

systems. Medical experts and researchers have recorded nearly 450 rare diseases to date that face a deficit of scientific and medical infrastructure.

Harsh Vardhan, Union health and family welfare minister of India, has authorised the National Policy for Rare Diseases 2021. This article discusses the latest essential details for UPSC and other competitive examinations syllabi.

All IAS exam aspirants must refer to the details discussed further below on National Policy for rare diseases to excel in the upcoming civil services examination.

Definitions of Rare Diseases

Below are some varying global definitions of rare diseases:

• The World Health Organisation defines them as frequent debilitating and lifelong disorders or diseases, prevailing in 1 per 1000 population.
• However, this definition in the US changes as an illness that affects less than 2,00,000 persons in the country. It gives a ratio of 6.4 patients in every 10,000 people.
• On the other hand, Japan defines a rare disease as that which affects below 50,000 of a population or 1 person per 2,500 people.
• Contrarily, the European Commission on Public Health says it is a chronic or life-threatening disease with very low prevalence.

Aspirants can also read about the Rare Diseases in India at the linked article.

Provisions of National Policy for Rare Diseases

Below are the provisions of this policy regarding the categorisation of diseases, financial support and alternate funding for them:

1. Categorisation of Rare diseases

This policy categorises rare diseases in 3 classified groups as follows:

• Group 1: Disorders manageable to 1 to 2 times of curative treatment.
• Group 2: Diseases that require lifelong or long term treatment.
• Group 3: Disorders with ideal treatment and challenges to benefit a maximum patient with optimum service. It also includes diseases of very high cost and persisting therapy.

1. Financial Assistance

The Government of India has provided financial aid to patients from each group of diseases as follows:

• Patients suffering from group 1 diseases will receive financial assistance up to ₹ 20 lakh under the Rashtriya Arogya Nidhi scheme.
• This scheme includes patients belonging below the poverty line (BPL) and suffering from life-threatening diseases under its umbrella.
• All the beneficiaries can avail of treatment and other medical support at any super speciality medical institutes, including government hospitals.
• This scheme will financially support 40% of the total population who are qualified for Pradhan Mantri Jan Arogya Yojana norms.
• Unlike BPL families, these beneficiaries will receive treatment only from Government tertiary hospitals.
• This policy also designates 8 health facilities named ‘Centres of Excellence.’
• Indian Government will support it by one-time aid of up to ₹ 5 crores to upgrade diagnostics facilities.

1. Alternate Funding

Indian Government has set up a digital platform for corporate donors and individuals to contribute voluntarily. This crowdfunding will be used to support the treatment expenses of patients with rare diseases.

Other UPSC Syllabus related links are as follows:

Objectives of National Policy for Rare Diseases

Followings are the primary aims or objectives of this scheme:

• Lowering the treatment costs of rare diseases.
• Increasing focus on native research and production of medicines.
• Improving medical infrastructure to examine and detect rare diseases at an early stage for preventing and treating them.
• Strengthening India’s tertiary health care sectors and better diagnosis and treatment facilities.

Concerns Regarding National Policy for Rare Diseases

National Policy for Rare Diseases also raises concerns that can hinder its objectives. Those issues are as follows:

• Despite having great aid for group 1 and 2 patients, sustainable funding for group 3 diseases lacks significantly. It causes a risk to all the patients under this group’s illness, which only can be supported by crowdfunding.
• There is a significant absence of domestic or local drug manufacturers for rare illnesses. Consequently, most of the patients face a considerable lack of treatment and medicines.
• Additionally, purchasing drugs for these diseases from global pharmaceutical companies can be prohibitively expensive. It poses a hefty cost of treatment to the patients and their families.
• On top of that, insufficient epidemiological data obstruct understanding the probable burden of prevailing rare illnesses. However, this scheme introduced a hospital-based national registry to ensure comprehensive definitions and adequate data of rare diseases.

These are comprehensive and essential details of the latest National Policy for Rare Diseases 2021. Aspirants can follow the information provided in this article along with other current news on this topic for optimum preparation.

For the best preparation strategy for competitive exams candidates can visit the linked article and get detailed study material and preparation tips to excel in the examination.

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