National Policy of Rare Diseases
Source: Hindu
GS II: Policies and Developmental Studies
What is discussed under National Policy of Rare Diseases?
- National Policy for Rare Diseases (NPRD)
- National Rare Diseases Committee
- Current Indian Scenario
Why in News?
The Delhi High Court has appointed a five-member panel to efficiently administer the Centre’s rare disease policy and ensure that its benefits reach sufferers.
National Policy for Rare Diseases (NPRD)
- The World Health Organisation defines rare illness as a debilitating lifelong disease or condition with a prevalence of 1 or fewer per 1000 people.
Image by mcmurryjulie from Pixabay - In March 2021, the government announced the National Policy for Rare Diseases (NPRD), 2021, to help people with rare diseases.
- The NPRD, 2021 includes:
- Provisions for promoting research and development for the detection and treatment of rare illnesses
- Promoting local drug development and manufacturing
- Creating a favourable environment for indigenous medication production for rare diseases at cheap rates
Aim
- To reduce the incidence and prevalence of rare diseases through an integrated and comprehensive preventive strategy that includes:
- Awareness generation
- Premarital, post-marital
- Pre-conception
- Post-conception screening and counselling programmes
- To prevent the birth of children with rare diseases
- To provide patients with access to affordable health care within the constraints of resources and competing health care priorities
National Rare Diseases Committee
- The National Rare Diseases Committee is a five-member group that was formed by the Delhi High Court to address the issues encountered by patients with rare diseases and to guarantee that patients receive effective treatment.
- Its goal is to guarantee that patients registered at the All-India Institute of Medical Sciences (AIIMS) in Delhi receive timely care and reap the benefits of the programme.
- The Committee’s wide mandate would be to take all necessary efforts to execute the National Rare Disease Policy, 2021.
- The group is made up of specialists from several sectors, including medical professionals, policymakers, and healthcare institution representatives.
- The court directed the panel to investigate the acquisition of treatments and pharmaceuticals, as well as the development of a logistical structure to deliver therapy.
Current Indian Scenario
- Data on how many people suffer from certain diseases that are considered uncommon internationally is insufficient.
- So far, all instances have been detected at tertiary hospitals.
- The scarcity of epidemiological data on the incidence and prevalence of uncommon diseases impedes comprehension of the disease burden and the establishment of a definition.
- So far, only a small number of diseases from tertiary care facilities in India have been reported, despite the fact that the scope may include 7000 to 8000 disorders.
- Hundreds of patients, primarily children, have enrolled with the Union Health Ministry’s ‘Digital Portal for Crowdfunding and Voluntary Donations for Patients with Rare Diseases’ under the National Policy for Rare Diseases, 2021.
- However, because to high expenses, financial restrictions, and competing health priorities, the government has been unable to completely fund their treatment.
- Commonly reported diseases:
- Primary immunodeficiency disorders:
- Lysosomal storage disorders (Gaucher’s disease, Mucopolysaccharidoses, Pompe disease, Fabry disease, etc.),
- Small molecule inborn errors of metabolism (Maple Syrup urine disease, organic acidemias, etc.)
- Cystic fibrosis
- Osteogenesis imperfecta
- Certain forms of muscular dystrophies
- Spinal muscular atrophy
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