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National Policy for Rare Diseases

National Policy for Rare Diseases

This is because, for some time, various stakeholders have been strongly demanding an overall policy for the prevention and management of rare diseases.

Key Points:

  • Due to many challenges, early detection of rare diseases is a major and serious problem.
  • There are many fundamental challenges inherent in the research and development of rare diseases, such as- In the Indian context, little information is available about the pathophysiology or the natural history associated with disorders related to rare diseases, as well as a small group of patients is not sufficient for medical experience.

Rare Diseases:

  • There is no universally accepted definition of a rare disease; it has different definitions in different countries.
  • The United States defines a disease affecting less than 2 million people in the country as a rare disease, while the European Union defines rare diseases as “life-threatening” or chronic debilitating, which affects no more than 5 in 10,000 people.
  • 86% of the rare disease is basically genetic, therefore adversely affecting the child born.

National Policy for Rare Diseases,2021:

  • Financial support uptoRs. 20 lakh under the Umbrella Scheme of RashtriyaArogayaNidhi shall be provided by the Central Government for treatment, of those rare diseases that require a one-time treatment (diseases listed under Group 1).
  • Patients of rare diseases will be eligible for one-time treatment under the Ayushman Bharat Pradhan Mantri Jan ArogyaYojana (AB-PMJAY).
  • The beneficiaries of the financial assistance will not only be from the BPL family, rather this assistance will extend to about 40% of the population who are eligible for treatment in government tertiary care only under PMJAY’s 23 Norms.
  • The policy has classified rare diseases into three groups-
  1. disorders amenable to one-time curative treatment
  2. Unusual diseases with long term or life long treatment
  3. And diseases for which definitive treatment is available but choosing the optimal patient for the benefit is the challenge.
  • At the same time, the policy also envisages a crowd funding arrangement, in which corporations and people will be encouraged to provide financial support through a robust IT platform for the treatment of rare diseases.
  • Funds so collected will be utilized by Centers of Excellence for treatment of all three categories of rare diseases as first charge and then the balance financial resources could also be used for research.

RashtriyaArogyaNidhiScheme:

  • The objective was to provide financial assistance to below-poverty-line patients suffering from serious illness so that they could avail treatment facilities in government hospitals.
  • Under this, patients with serious diseases have been provided treatment in super specialty hospitals / institutes and government hospitals.
  • Additionally, the RashtriyaArogyaNidhiSchemehas been in operation since 1977. The scheme is administered by the Union Ministry of Health and Family Welfare. Presently, under this scheme, benefits of treatment up to Rs. 2 lakh can be availed in 13 government super specialty medical institutions in different states of the country. For treatment beyond this, financial support is received after approval from the Union Ministry of Health and Family Welfare.

Source: Hindustan Times

 

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