The new rare disease policy draft report of the government has proposed the establishment of alternate funding through voluntary crowdfunding and corporate funding, and an increase in assistance for patients needing one-time treatment from Rs 15 lakh to Rs 20 lakh.
The new Rare Disease Policy Draft Report was released on March 31 by the Health Ministry and it earmarked three categories of rare disease based on the nature of the treatment.
They are disorders amenable to one-time curative treatment, diseases requiring long term or lifelong treatment having a relatively lower cost of treatment and diseases for which definitive treatment is available but challenges are to make an 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 proposes the establishment of alternate funding of rare diseases through voluntary crowdfunding and corporate funding.
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 Arogya Yojana,” the policy said.
The policy said the beneficiaries of the assistance are not limited to the BPL families but extended to almost 40 percent of the population eligible under the Pradhan Mantri Jan Arogya Yojana.
Noting that India has close to 50-100 million people affected by rare diseases or disorders, the policy report said almost 80 percent 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 disease.
The policy also states 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 contributions and corporate donors to voluntarily contribute to the treatment cost of patients of rare diseases.
The government has identified eight centers of excellence for aid and support to patients of rare diseases.
These include All India Institue of Medical Sciences, New Delhi, Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, Centre for DNA Fingerprinting and Diagnostics, Hyderabad, King Edward Medical Hospital, Mumbai, Institute of Post-Graduate Medical Education and Research, Kolkata.
