Table of Contents
CURRENT AFFAIR
- On January 13, 2020, the Government of India released its National Draft Policy on rare diseases
Rare Diseases
- A rare disease is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population.
- It is estimated that globally around 6000 to 8000 rare diseases exist with new rare diseases being reported in the medical literature regularly.
- However, 80% of all rare disease patients are affected by approximately 350 rare diseases.
Need for a Policy
- Rare diseases are, in most cases, serious, chronic, debilitating and life threatening illnesses, often requiring long-term and specialised treatments/management.
- In addition, they often result in some form of handicap, sometimes extremely severe.
- Moreover, they disproportionately impact children: 50% of new cases are in children and are responsible for 35% of deaths before the age of 1 year, 10% between the ages of 1 and 5 years and 12% between 5 and 15 years.
- The impact on families is often catastrophic in terms of emotional as well as financial drain, as the cost of treatment is prohibitively high.
DETAILS
- The policy has proposed one-time fund of Rs 15 lakhs to treat rare diseases under Ayushman Bharat.
- The policy was drafted by Ministry of Health and Family welfare.
Highlights
- Under the policy, certain medical institutes will be certified as Centre of Excellence for rare diseases.
- It includes AIIMS. New Delhi, Sanjay Gandhi Post Graduate Institute of Medical Science, Lucknow, King Edward Medical Hospital, Mumbai and four others.
- There are certain diseases such as Hurler Syndrome, Gaucher’s disease, Wolman disease for which the annual treatment expenses may vary from Rs 10 lakhs to Rs 1 crore.
- For such diseases, a digital platform is to be set up to raise donations and corporate funding.
Key Features
- An inter-ministerial consultative committee is to be set up at national level. The committee will be led by
- A patient registry of rare diseases is to be constituted under ICMR (Indian Council of Medical Research).
- To create Administrative Committee that will develop guidelines to determine which rare diseases to fund.
OTHER FEATURES
- Financial support under its umbrella scheme Rashtriya Arogya Nidhi.
- Notify certain medical institutions as Centres of Excellence for Rare Diseases.
Concerns
- There are 7,000 to 8,000 rare diseases.
- However, therapies are available only to less than 5%
- So far, 450 rare diseases have been recorded in India.
- There is no definition for rare diseases. There is no data on number of people suffering from rare diseases in India.
Definition
- Looking at global scenario (in countries like US, UK, Japan), India defines rare diseases.
- In India, rare diseases are those diseases affecting 6% to 8% of the population.
Rare diseases that are included in the draft policy
- Thalassemia, Haemophilia, Primary Immuno deficiency in children, sickle cell anaemia, lysosomal storage disorders such as Gaucher’s disease, Hirschsprung disease, Pompe disease, Hemangiomas, Cystic Fibrosis.
Committees appointed
- The GoI had appointed three committees to frame the
- The policy has been framed based on the recommendations of the following committees
- V K Paul Committee
- IC Verma Sub Committee Report
- D K Tempe Committee Report
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