Rare Disease

Rare Disease

News:

Children losing their life due lack of action on implementing the National Policy on Rare Diseases.

Important Facts:

What are Rare Diseases?            

• A rare disease is a health condition which has a low prevalence and affects a small number of people. Rare diseases include genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases.
• They are chronic, debilitating, life threatening and often result in some form of handicap. Patients have often taken the government to court on this, because treatment of rare diseases is long, specialized and expensive.
• The most common rare diseases reported in India include hemophilia, thalassemia, sickle-cell anemia and primary immune deficiency in children, autoimmune diseases, lysosomal storage disorders such as pompe disease, Hirsch sprung disease, gaucher’s disease, cystic fibrosis, hemangiomas and certain forms of muscular dystrophies.

National Policy on Rare Diseases

• National Policy on Rare Diseases was introduced in 2017
• It provided for corpus fund of 100 Crores at Central and State Level for part funding treatment of rare diseases,
• Setting up of a Central Technical Committee (CTC) and individual State Technical Committees (STCs) to ease the process of patient applications,
• Encouraging funding support from public sector undertakings (PSUs)

Gaps highlighted in the Policy:

• Policy is silent on a definition of rare diseases – India does not have a definition for rare diseases. The new policy does not define this either, leaving it unresolved and saying
• No Corpus fund – Though the corpus fund of 100 Crores was provided in the affidavit, no such corpus was created under National Health Mission
• Many of the states in India, till now, do not know about the national policy or have the clarity on its implementation
• There is no clarification as to whether the financial help for treatment would only be provided for BPL patients or would also include APL patients
• The implementation of the policy was mistakenly shifted from the Public Health Division to the National Health Mission, which has the mandate of only primary and secondary healthcare while rarest diseases require tertiary care.
• Due to this discrepancy, the affidavit claims, National Health Mission funds cannot be earmarked to create the Rs 100 crore corpus

Way Forward:

• As health is a state subject, state governments have a critical role to play in providing and organizing whatever support these patients require.
• Karnataka is emerging as a model state in this regard with the establishment of a rare disease care center of excellence at the Indira Gandhi Institute for Child Health (IGICH) in Bengaluru. Other states should follow this initiative to provide the much needed succor to these patients without wasting further time.