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Rare disease policy a mockery of right to health, says Bengaluru advocacy group

"The NPRD, 2021, is a mockery of the right to health each person in India enjoys. The lack of foresight shines through the cold and thoughtless draft," said Prasanna Shirol, Founder Director, ORDI

Published: 07th April 2021 07:32 PM  |   Last Updated: 07th April 2021 07:34 PM   |  A+A-

FIle photo of children suffering from Lysosomal Storage Disorder protesting against the delay in setting up a treatment unit for rare genetic disorders at the Indira Gandhi Institute of Child Health.

File photo of children suffering from Lysosomal Storage Disorder protesting against the delay in setting up a treatment unit for rare genetic disorders at the Indira Gandhi Institute of Child Health.

By Express News Service

BENGALURU: Slamming the National Policy for Rare Diseases 2021, the Bengaluru-based Organization for Rare Diseases India issued a press note stating that the policy fails to acknowledge and address the real challenges of rare disease patients and their families.

They pointed out that there is no specific funding allocated for the treatment of Rare Diseases (Group 2 and Group 3 disorders) and the policy suggested relying on crowdfunding which is not a practical solution. Group 2 and Group 3 are diseases requiring long term treatment, with the former being less costly and ranging between 5 lakh and 10 lakh a year.

The latter is far more expensive and can in some cases depend on the body weight of the patient. For example, in Lysosomal Storage Disease, where treatment may cost Rs 40 lakh if the patient is 10 kg, Rs 80 lakh for 20 kg, 1.2 crore for 30 kg, etc.

"The NPRD, 2021, is a mockery of the right to health each person in India enjoys. The lack of foresight shines through the cold and thoughtless draft. A truly shocking thing, given the hundreds of High Court cases and representations spanning almost two decades by patient advocacy groups," said Prasanna Shirol, Founder Director, ORDI.

The policy invokes Rashtriya Arogya Nidhi (RAN) Scheme, stating that Rs 20 lakh would be given to diseases falling within Group 1 (one time curative treatment). This amount is inadequate, the group stated.

A person living with a rare disease may have a first line treatment (therapy/drug for their particular disease), a second line treatment (drugs developed for other diseases that are repurposed to manage their symptoms individually, but don’t treat the disease as a whole), and/or palliative, rehabilitative treatment (physiotherapy, nutrition supplements and foods). Many times, a patient needs one or more of these three forms of treatment, in addition to frequent diagnostics, that is, lab work, medical scans, use of assistive aids and medical devices. The policy does not account for all these various elements, the statement read.

"How has the list of rare diseases currently in the NPRD 2021 been collated without clearly defining or setting out the parameters of what would be considered a rare disease? Not being “listed” amounts to not being counted, and being counted, could mean the difference between life or death," the group asserted.

They highlighted the lack of clarity in the state government's role in providing supportive care for Group 2 diseases and lack of allocation for local innovation, manufacturing, reduction in drug costs, devices and therapies.



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