National Draft Policy on Rare Diseases

January 15, 2020

On January 13, 2020, the Government of India released its National Draft Policy on rare diseases. 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 of the policy

An inter-ministerial consultative committee is to be set up at national level. The committee will be led by MoHFW.
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.

Concerns

There are 7,000 to 8,000 rare diseases. However, therapies are available only to less than 5% diseases. So far, 450 rare diseases have been recorded in India.

There is no definition for rare diseases. However, 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.

There is no data on number of people suffering from rare diseases in India.

Rare Diseases

The rare diseases that are included in the draft policy are 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.