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National Roundtable Discussion on Rare Diseases Policy – Call to Action

Image ID: 59305013Rare diseases are diseases with a low prevalence and encompass a spectrum of over 7000 diseases, that together could amount to a significant absolute number in the population of any country. 

India shares a significant proportion of rare diseases, with estimates of over 70 million people with rare genetic disorders. However, these estimates are based only on the mathematical extrapolation basis global figures and the real figures for India, based on primary evidences, are yet to be computed. The actual current load of identified and diagnosed patients would be significantly lower. Without any due recognition of its significance and externalities on patients, many of these diseases may undoubtedly remain undiagnosed. 

Rare diseases are progressive in nature and may require continuous support. While some of these could be managed with low cost interventions, others could be either economically draining or unviable for the families. Hence there is a  need for government support to the families in the management of such disorders. For example, the cost of treatment for lysosomal storage disorders ranges from 50-60 lacs per year, and for Spinal Muscular Atrophy, the yearly cost is even higher. 

Recognizing this, the National Health Policy, 2017 acknowledged the need for management of rare/orphan diseases and a National Policy for Treatment of Rare Diseases was formulated in 2017. As per the Policy, a corpus fund of Rs. 100 crores were allocated for funding treatment of rare genetic diseases. 

However, the Ministry of Health and Family Welfare withdrew the policy in November 2018, citing new developments, hurdles faced in identifying the beneficiaries along with associated costs of treatments of various diseases and absence of State consultations. The policy is now under review, and the reframed policy is expected to be announced in November 2019. As an interim measure, a sub-component under the umbrella scheme of Rashtriya Arogya Nidhi (RAN) has been rolled-out to provide one-time financial assistance to those below threshold poverty line for specified rare diseases for one-time treatment. 

The constant issue the government faces is prioritization of funds as the cost of treatment seems to be very high. A point to be noted is that individually these are rare diseases (actual numbers per disorder is extremely low), and that very few of the rare disorders have a treatment option. An important point to note is that overall revenue impact to the Government towards treating Rare diseases will be insignificant compared to the overall health care budget. For Example, the overall expenditure on Rare diseases treatment in Europe is predicted to a peak of 4.6% of overall Pharma market and expected to level off by 2020. (Schey C, Milanova T, Hutchings A. Estimating the budget impact of orphan medicines in Europe: 2010 – 2020. Orphanet J Rare Dis. 2011 Sep 27;6:62.In a country which boasts of the world’s largest healthcare scheme and envisions Universal Health Coverage, it is important to deliberate and review whether the Government can choose not to provide treatment to patients with such disorders, citing reasons of higher costs and lack of funds. 

In this regard, HII is hosting a roundtable discussion in presence of key experts which aims at deliberating the need for a National Rare Diseases Policy and potential implementation strategies for catering to the needs of the rare diseases’ patients.

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