Rare Diseases

What is in the News ?

• The central government earlier this week exempted all foods and drugs imported by people for personal use from custom duty.
• With most therapy for rare diseases priced very high, this will make a significant difference to families of people living with the conditions.

Benefits

• The exemption will lead to substantial savings for patients with rare diseases, who are often unable to afford life-saving medicines due to prohibitive costs.
• Along with medicines for rare diseases, the government also removed customs on the cancer immunotherapy medicine Keytruda.

What is it ?

• According to the WHO, a rare disease is a debilitating lifelong disease or disorder with a prevalence of ten or less per 10,000 population. Treatment for such diseases can be very expensive: going up to Rs 1 crore per year.
• Also known as ‘Orphan Disease’.
• An estimated 100 million people in India have some form of rare diseases.

National Policy for Rare Diseases, 2021

• It offers financial support for one-time treatment of up to Rs. 20 lakh, introduces a crowdfunding mechanism, creates a registry of rare diseases and provides for early detection.
• It categories ‘rare disease’ into three groups :
  • Group 1:  Disorders amenable to one-time curative treatment (financial support of up to Rs. 20 lakh under the umbrella scheme of Rashtriya Arogya Nidhi).
  • Group 2: Those requiring long-term or lifelong treatment.
  • Group 3: Diseases for which definitive treatment is available but challenges are to make an optimal patient selection for benefit, very high cost and lifelong therapy.

Practice Questions for Prelims

Consider the following statements regarding Monkeypox:
1. Monkeypox is a rare disease like smallpox caused by the monkeypox bacteria.
2. There is no proven treatment for Monkeypox.

Choose the correct statement/statements-
a) 1 only
b) 2 only
c) Both 1 and 2
d) Neither 1 nor 2

Ans. c

Mains Practice Question

Q. What do you mean by “Rare diseases” and also discuss how “National policy of rare
diseases” is an effective tool to provide treatment against these diseases?

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