National Policy for Rare Diseases

By : Neha Dhyani

Updated : Apr 20, 2022, 9:05

On March 30th, 2021, Union Health and Family Welfare Minister Dr Harsh Vardhan adopted the "National Policy for Rare Diseases 2021." The Delhi high court played a major role in setting up the policy by employing a rare disease committee with a rare disease fund.

The main goal of establishing the policy is to focus on bringing down the cost of treating rare diseases in India along with ensuring top-notch investments in enhancing the research infrastructure.

What are the Rare Diseases?

Rare diseases are hazardous illnesses that are life-threatening as well as destructive to physical and mental health. However, only a very small population gets exposed to these kinds of diseases. Rare diseases have no approved treatments in 95 per cent of cases, and only around 1 in 10 patients receive disease-specific medication.

Examples -

Pompe disease, cystic fibrosis, muscular dystrophy, spina bifida etc.

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Types of Rare Diseases Under National Policy For Rare Diseases

In India, there is a record of having different types of rare diseases. They have been categorised into three major groups under the ambit of the National Policy for Rare Diseases 2021.

Group 1: This category refers to rare diseases that require a one-time remedial treatment.

Group 2: Rare diseases that require a prolonged period of treatment fall under this category. Sometimes they need life-long medication too.

Group 3: Rare diseases that require distinctive treatment belong to this category.

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Facts Regarding The National Policy For Rare Diseases

  • The policy aims to reduce the treatment costs of rare illnesses while also exerting a greater emphasis on indigenous healthcare research and medicine production.
  • The Rashtriya Arogya Nidhi scheme will provide 20 lakh rupees of monetary support to patients suffering from category 1
  • Patients enlisted in the list below the poverty line (BPL) and suffering from life-threatening health and disease conditions are covered by this programme.
  • This scheme would provide monetary support to 40% of the overall population that satisfies the Pradhan Mantri Jan Arogya Yojana requirements.
  • This programme will identify eight health facilities as 'Centres of Excellence.' if they are able to possess desirable results.
  • This will be backed by the Indian government with a one-time subsidy of up to Rs 5 crore to expand and improve diagnostic testing and healthcare facilities.

Concerns Associated with National Policy for Rare Diseases

  • The funding for group three patients is not enough and that may lead the patients into distress. They will be required to depend on the crowdfunding facility mostly.
  • The lack of native drug manufacturers, along with purchasing expensive drugs from foreign countries, is a prevailing issue in the country that may hamper the workflow of the policy.

The National Policy for Rare Diseases 2021 also strives for the advancement of medical facilities to achieve early detection and treatment of rare diseases as well as advance the territorial health services of the country.

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FAQs on National Policy for Rare Diseases

Q.1. What was the date when the National Policy for Rare Diseases was launched?

India's Union Health Ministry founded the National Policy for Rare Diseases on March 30, 2021.

Q.2. Who has officially accepted the National Policy for rare diseases?

On March 30, 2021, Dr Harsh Vardhan, Union Health and Family Welfare Minister, endorsed the "National Policy for Rare Diseases 2021".

Q.3. What amount has been assigned to the National Policy for Rare Diseases?

The Central Government will grant financial support of up to Rs. 20 lakhs to people suffering from group one diseases under the National Policy for Rare Diseases.

Q.4. How many types of diseases are incorporated under the ambit of the National Policy for Rare Diseases?

The National Policy for Rare Diseases has classified rare diseases into three groups, including group one, having diseases with one-time curative treatment, and group 2 referring to diseases requiring long term or lifelong treatment. Group three is also there and specifies the diseases with definitive treatment.

Q.4. What are the Rare Diseases Illness Groups in India with the most cases?

Cancer and auto-immune illnesses account for the greatest number of instances of Rare Diseases Illness Groups in India.