National Policy of Rare Diseases
About:
- The Ministry of Health and Family Welfare established the NPRD in 2021 to assist people with rare diseases.
- Increasing public knowledge of domestic drug development and research is the goal.
- to lower the cost of treating rare diseases.
- The early detection of rare diseases by screening will aid in their prevention.
Important Policy Requirements:
- Disorders in Group 1 that only need a single treatment are categorised as such.
- Patients in group two require continuing or protracted treatment.
- Group 3: Conditions with a long-term cure, but difficult patient selection due to factors including high cost and lifetime care.
- Financial Help: Under the Rashtriya Arogya Nidhi umbrella programme, individuals with rare diseases classified as Group 1 are entitled for financial assistance of up to Rs. 20 lakh.
- Patients who are Below Poverty Line (BPL) and have serious, life-threatening illnesses can receive care at any super-specialty Government hospitals or institutes thanks to financial help from Rashtriya Arogya Nidhi.
- Such financial assistance will benefit both BPL families and the nearly 40% of the general population who fall within the scope of the Pradhan Mantri Jan Arogya Yojana and meet the requirements for only receiving care in government tertiary institutions.
- Alternative Funding: This means establishing a digital platform for business donations and individual contributions to pay for the voluntary treatment of persons with rare diseases.
- Eight healthcare facilities have been designated as “Centres of Excellence” as part of the effort to strengthen tertiary health care facilities for the prevention and treatment of rare diseases. These facilities would also receive a one-time grant for up to Rs. 5 crore to develop diagnostics facilities.
- Governmental Register To ensure that reliable data and thorough definitions of such diseases are available to individuals interested in research and development, a national hospital-based register of uncommon diseases will be established.
What conditions make an illness rare?
- Less than 5% of the 6,000–8,000 rare diseases that have been designated as such have treatments.
- Lysosomal Storage Disorders (LSD), Pompe disease, cystic fibrosis, muscular dystrophy, spina bifida, and haemophilia are a few instances.
- Less than one in ten patients receive treatment specifically for their illness, and more than 95% of uncommon diseases have no approved treatments.
- In 80% of cases, these illnesses have a hereditary component.
- The prevalence of these disorders ranges from those that affect 1 in 10,000 of the population to those that affect 6 in 10,000, depending on the criteria used in the various nations.
- A health problem with a low prevalence that affects a disproportionately small number of people as compared to other common diseases in the general population is commonly referred to as a “rare disease.” There is a lot of potential for serious, disabling, and even fatal cases of rare diseases.
- In India, there are between 50 and 100 million people who have a rare disease or disorder, according to the policy study. The high morbidity and death rates of these life-threatening disorders play a crucial role in why the majority of these patients do not survive to adulthood. Nearly 80% of these patients are youngsters.
