India’s new rare diseases policy offers a lifeline to many

News: India needs a rare diseases policy to address the health issue of those for whom the cost of treatment is extremely high.

India requires a policy that is entirely focused on rare diseases, especially blood-threatening diseases, whose burden is huge in India.

What is the burden of haematological disease in India?

Every year, over 10,000 children are born with thalassemia and over 7,000 cases are diagnosed with aplastic anaemia. The per-year incidence of blood cancer is over 1,00,000.

Blood stem cell transplant plays an important role in the treatment of such disorders. But Indian stem cell donors only form about 0.04 per cent of the total listed unrelated donors globally.

What steps have been taken by India?

India has introduced the National Policy for Rare Diseases, 2021 (NPRD). It aims to cover 40 % of the population that is eligible under the Pradhan Mantri Jan Arogya Yojana.

What role can the social sector play?

Multi-stakeholder approach: include stakeholders who can fill critical gaps. For example organisations like DKMS BMST Foundation India who have more than 50,000 donors.

Public engagement: By raising awareness, conducting webinars, donor registration events, and various other media campaigns.

Technological innovations: DKMS has developed HAP-E Search, which helps connect haematologists and oncologists to potential donors across the globe.

Thus, an approach that is based on public-private partnership and includes civil society can best handle the issues of rare diseases.

Source: This post is based on the article  “India’s new rare diseases policy offers a lifeline to many” published in Indian Express on 8th November 2021.