Establishment of alternate funding through voluntary crowd and corporate funding, and increase in assistance for patients needing one-time treatment from Rs 15 lakh to Rs 20 lakh and identifying centre for excellence are some of the key features proposed by the Union Health Ministry in the newly-drafted Rare Disease Policy.
As per the policy, rare diseases have been earmarked under three categories based on the nature of treatment. They are disorders amenable to one-time curative treatment, diseases requiring long term or lifelong treatment having relatively lower cost of treatment and diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy, like Lysosomal Storage Disorders (LSD) like Gaucher Disease, Hunter Syndrome and Fabry Disease.
The policy comes on the last day of the deadline given by the Delhi High Court which has asked for the government’s entire unspent budget allocated to rare diseases for the past three years to be immediately moved into the rare diseases fund. However, the policy is silent on this aspect.
Instead, the policy proposes the formulation of an alternative form of funding to help patients of rare diseases. This includes voluntary crowdfunding treatment by setting up a digital platform for voluntary individual contribution and corporate donors to voluntarily contribute to the treatment cost of patients of rare diseases.
Noting that India has close to 50-100 million people affected by rare diseases or disorders, the policy report said almost 80 per cent of these rare condition patients are children and a leading cause for most of them not reaching adulthood is due to the high morbidity and mortality rates of these life-threatening diseases.
It also seeks to provide assistance for patients needing one-time treatment for rare diseases increased to Rs 20 lakh from Rs 15 lakh.
“Assistance to be provided under the Rashtriya Arogaya Yojana,” the policy said adding that the beneficiaries of the assistance are not limited to the BPL families but extended to almost 40 per cent of population eligible under the Pradhan Mantri Jan Arogya Yojana.
The policy also notes that as the number of persons suffering from individual rare diseases is small, they do not constitute a significant market for drug manufacturers to develop and bring to market drugs for them.