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Policy on rare diseases

Mains-GS2-Social Justice

Union Ministry of Health and Family Welfare has published a draft ‘National policy for treatment of rare diseases 2020’ recently.

Reasons for policy

1. Ministry of Health and Family Welfare had formulated a National Policy for Treatment of Rare Diseases (NPTRD) in July 2017.

2. However, the Ministry has come up with a new draft policy due to various challenges. Public Health and Hospitals is a State subject. But the states couldn’t agree on various issues.

a) Cost-effectiveness of interventions for rare disease.

b) Health priorities of the different states

c) Sharing of expenditure between Central and State Governments

d) Flexibility to State Governments to accept the policy.

About the policy

1. The policy lists around 450 diseases as rare diseases. The policy intends to start a registry of rare diseases that the Indian Council of Medical Research will maintain.

Rare diseases

- World Health Organization (WHO) defines a rare disease as often debilitating lifelong disease or disorder condition with a prevalence of 1 or less per 1000 population.

-  However, different countries have their own definitions to suit their specific requirements.

- In India, Haemophilia, Thalassemia, Sickle cell anaemia and Primary Immune Deficiency in children, auto-immune diseases, Lysosomal storage disorders, etc. are in the rare diseases list

2. The policy creates three categories of rare diseases,

a) Diseases requiring one-time curative treatment

b) Diseases which need long-term treatment but the cost is low

c) Diseases that require life-long treatment and the cost is high

3. Under the draft National Policy for Rare Diseases, the Ministry of Health would provide financial support of Rs. 15 lakh under its umbrella scheme Rashtriya Arogya Nidhi.

Rashtriya Arogya Nidhi

- It was set up in 1997 to provide financial assistance to patients living below the poverty line prescribed from time to time and who are suffering from life-threatening diseases.

- The financial assistance to such patients is released in the form of ‘one-time grant’ to the Medical Superintendent of the hospital in which the treatment is being received.

4. The treatment is limited to beneficiaries of Pradhan Mantri Jan Arogya Yojana. Some diseases in this category are osteopetrosis, immune deficiency disorders, and Lysosomal Storage Disorders.

5. The policy has recommended that state governments support patients belonging to the second category of diseases that include Phenylketonuria and Galactosemia.

6. It recommends crowdfunding as a source to fund treatment of rare diseases and advises hospitals to report such cases on digital platforms to gather funds.

Source- The Hindu and Livemint