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What is the News?
The caretakers of patients with ‘rare diseases’ are not satisfied with the National Policy for Rare Diseases 2021. The Union Health Ministry recently released the policy.
Rare Diseases: WHO defines a rare disease as a lifelong disease or disorder that often highly weakens an individual. It has a prevalence of 1 or less per 1000 population. Example: Haemophilia, Thalassemia, Sickle cell anaemia, auto-immune diseases among others.
- However, every country has its own definition for rare diseases.
- The US defines rare diseases as a disease or condition that affects fewer than 200,000 patients in the country.
- Likewise, the EU defines rare diseases as life-threatening or chronically debilitating (weakening) condition. It should affect no more than 5 in 10,000 people.
About National Policy For Rare Diseases,2021:
- Aim: The policy aims to lower the incidence and prevalence of rare diseases based on an integrated and comprehensive preventive strategy. The strategy includes awareness generation, counselling programmes, providing affordable Health Care among others.
Key Features of the National Policy For Rare Diseases,2021:
- Categorisation: The policy categorizes rare diseases into three groups:
- Group 1: Disorders amenable to one-time curative treatment;
- Group 2: Diseases requiring long term or lifelong treatment; and
- Group 3: Diseases for which definitive treatment is available, but challenges are to make an optimal patient selection for benefit.
- Government Support:
- The government will provide Financial support of up to Rs. 20 lakh under the Umbrella Scheme of Rashtriya Arogya Nidhi for treatment of those rare diseases listed under Group 1.
- Moreover, Beneficiaries for such financial assistance would not be limited to BPL families. About 40% of the population, eligible under Pradhan Mantri Jan Arogya Yojana, will also be eligible for assistance.
- Further, for group 2, the State Governments can consider supporting specific patients. It includes a rare disease that can be managed with special diets or hormonal supplements or other relatively low-cost interventions (Diseases listed under Group 2).
- Voluntary Crowdfunding: The government has said that it will assist in voluntary crowd-funding for the treatment of Group 3. It is because it will be difficult to fully finance the treatment of high-cost rare diseases of Group 3.
Objections to the Policy:
- The policy offers no support to patients awaiting treatment since the earlier National Policy for Treatment of Rare Diseases 2017 was kept on hold.
- The policy has left patients with Group 3 rare diseases to fend for themselves. It has absolutely no consideration for Group 3 patients who require lifelong treatment support.
Rashtriya Arogya Nidhi scheme:
It provides financial assistance to patients living below the poverty line and who are suffering from major life-threatening diseases, to receive medical treatment.
Source: The Hindu