Effective implementation can treat Rare Diseases

Effective implementation of National Policy for treatment of rare diseases can treat rare diseases

What are the challenges faced by India’s Healthcare system?

  1. Changing disease patterns and complexities.
  2. Growing treatment requirements of patients.
  3. Recognizing Rare Diseases

What are the initiatives taken by Govt to meet the Recognizing rare diseases challenge ?

  • Recognising rare diseases as a public health challenge, The Ministry of Health and Family Welfare (MOH&FW) recently approved and finalised the National Policy for Treatment of Rare Diseases.
  • The policy is comprehensive and aims to improve the diagnostic facilities and treatment of lesser known disorders.

What is rare diseases ?

Rare diseases, by definition, are those which do not affect a large number of people and are often chronic.

Why do we need a policy on Rare Diseases ?

  • The number of patients suffering from rare diseases is huge.
  • According to the Indian Society for Clinical Research (ISCR) there are an estimated 70 million patients living with a rare disease, approximately 50 per cent of those affected are children.
  • The high mortality rate compounded by lack of awareness, lack of diagnostic facilities and huge cost of treatment

What are the key provisions laid in National Policy for Treatment of Rare Diseases ?

Key provisions :-

  • One of the most significant is the setting up of a 100-crore fund for the treatment of rare diseases wherein 60 per cent of the contribution would be by the Centre and 40 per cent by individual State governments.
  • It also recognises the need to sustain the corpus.
  • The policy further highlights the fact that health being a State subject, there is a need for States to come out with their respective policies.
  • The formulation of a definition of rare diseases, creating web-based applications, and providing insurance cover for treatment are some of the other major features.

What are the measures taken by govt to successfully implement the policy ?

The MoH&FW has :-

  • Constituted an Inter-Ministerial committee to ensure coordination with various ministries and departments.
  • Constituted a Central technical committee to handle the corpus fund at the Central and State levels
  • Develop technical requirements for the identification and treatment of rare diseases.

What recommendations need to be executed by committees ?

  • First, the technical committee should immediately send a guidance document to State National Health Mission directors and health secretaries calling for a PIP proposal document clearly outlining the identification of a nodal hospital in the respective States with adequate facilities for therapy administration and supportive care.
  • Second, The inter-ministerial committee must put forth a clear plan for sustainable funding sources to ensure uninterrupted treatment for children afflicted with rare diseases.

What else needs to be done ?

  • As a measure to provide immediate relief, treatment should be given to patients who have already been identified as having rare diseases.
  • With respect to early detection, the nodal hospitals should systematically conduct genetic counselling especially in high-risk cases.
  • As a longer term goal, newborn screening programmes for treatable rare diseases should be initiated and made mandatory.
Conclusion :-
It is clear that the Government has to take the lead to manage life-threatening conditions but what is also required is for States to be equally involved in implementing the action plan. In this regard, adopting an evidence-based approach with specific roles for the various stakeholders is key to the productive implementation of the recommendations.

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