01 Feb National policy for rare disease 2021
National policy for rare disease 2021- Today Current Affairs
GS-2 Social Service & Health related sector
The World Health organisation defines rare disease as often debilitating lifelong diseases with the prevalence of one or less per 1000 population. As per estimates there are seven thousand known rare diseases within an estimated 300 million patients in the world and 70 million are in India. According to organisation for rare diseases India’s majority of it include cancer autoimmune disorders, congenital malformations, raucher diseases and muscular dystrophies
Challenge in dealing with rare diseases: The Hindu Analysis
- Longtime doctors, researchers and policy makers work unaware of rare diseases.
- The landscape of rare diseases is constantly changing as their new rare disease.
- Apart from a few rare diseases where significant progress has been made the field is still at a nascent stage.
- Until very recently there was no real research or public health policy concerning rare diseases.
- Families that have members with their diseases are either unaware or found helpless in treating them due to no homegrown expertise.
- Offence drugs exist in only a few rare diseases and they are exorbitantly priced and beyond the reach of a common man.
National policy for rare diseases: The Hindu Analysis
- The rare disease policy aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research.
- Increase focus on local production of medicine that will lower the cost of treatment for rare diseases.
- The policy also envisages creation of a National hospital based registry of rare disease so that adequate data is available for research and development.
- Policy also aims to strengthen tertiary health care facilities for prevention and treatment of rare diseases.
- Early screening and prevention through primary and secondary healthcare infrastructure.
- The policy also envisages a crowdfunding mechanism in which corporate and individuals will be encouraged to extend financial support.
Limitations of the policy: The Hindu Analysis
- For disease such as lysosomal storage disorders for which definitely treatment is available but Costs are have been categorised as group 3.
- No funding has been allocated for the immediate and lifelong treatment needs, what help is already approved by the drugs controller general of India.
- Experts point out that the cost to help already diagnose patients might be in the range of rupees 80 to 100 crore annually.
- If the centre can extend the cost sharing agreement that it has worked out with Kerala Tamilnadu and Karnataka with other states too, its share of the annual cost will be halved.
- The centre can set aside a substantial corpus of funds for life saving treatments.
- Doing so well will not only complete the job well begun but also cement its commitment towards the welfare of every single citizen in India.
- It is binding on a welfare state to take care of every single citizen. Securing the well-being of everyone, particularly those unable to help themselves is. important