In context of Rare Diseases
India shares Rare Disease day at the last day of February every year, To support crores of
individuals who, because of their Rare medical conditions, have long been neglected and
stigmatised.
According to the World Health Organization (WHO), Rare diseases afflict 1 or less per 1,000
population. Barely 5% of the over 7,000 known diseases are treatable.
Rare Diseases In India
India accounts for one third of the global Rare diseases incidence, with over 450 identified
diseases. Some widely known as Spinal Muscular Atrophy and Gaucher’s disease to
lesser-known such as Mucopolysaccharidosis type 1 and Whipple’s disease.
Approximately 8 to 10 crore Indians suffer from one Rare disease or another; over 75% are
children. Less than 50% of the 450-odd Rare diseases identified in India are Treatable.
Treatments approved by the Drug Controller General of India are available for just about 20
rare diseases and can be available only from Centers of Excellence (CoEs).
Challenges Regarding Rare Disease In India
There are many challenges because of which Rare diseases prevail in India,some of them
are:-
1. We don’t have a standardised definition for ‘Rare diseases’.
2. Lack of sufficient data and epidemiological assessment.
3. Timely and accurate diagnosis, It takes an average 7 years for Rare disease
condition to be diagnosed.
4. Physicians are generally unaware how to interpret the signs and symptoms.
5. There are few CoEs(12)which are also unevenly distributed .
6. Funds are a major challenge too , which remains low at ₹93 crore for 2023-24.
7. There is parity between CoEs, with Mumbai exhausting all its funds and Delhi
utilising less than 20%.
Measurements for Rare Disease
To counter above mentioned challenges some Measurements are required such as–
1. It is imperative for the Central Government to frame a standard definition of Rare
Diseases.
2. Increasing budgetary outlay and dedicate funding for drug development and therapy.
3. Increasing the number of CoEs and Ensuring better coordination.
4. Responsible utilisation of funds.
5. Public and private companies could be co-opted for funding.
6. The issue of exorbitant drug prices and availability must be addressed.
××××××××××××××
Telegram Link :
For latest news, first Hand written articles & trending news join Saachibaat telegram group
https://t.me/joinchat/llGA9DGZF9xmMDc1
