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Organization for Rare Diseases India (ORDI) strongly believes that there are many things that are woefully missing in the NPRD 2021. For one thing, the government has taken a rather cavalier approach to the issue of affordability of the care needed to sustain a life of dignity for persons living with rare diseases.
To tackle the issue of affordability, the NPRD 2021 suggests that an ailing/dying patient or their family should rely on crowdfunding for treatment.
A person living with a rare disease may have a first line treatment with a drug for their particular disease. A second line treatment which are drugs actually developed for other diseases that are repurposed to manage their symptoms individually, but don’t treat the disease as a whole. Palliative and rehabilitative treatment which include physiotherapy, nutrition supplements and foods.
Many times, a patient needs one or more of these three forms of treatment, in addition to frequent diagnostics. In some cases, patients also use assistive aids and medical devices like C-PAP machines. The NPRD, 2021 does not account for all these various elements that come together to form one coherent treatment package for patients, and therefore fails to understand the true extent of the financial, emotional, and mental costs.
The NPRD invokes the Rashtriya Arogya Nidhi (RAN) Scheme, stating that Rs. 20 lakh would be given to diseases falling within Group 1 of the NPRD, 2021 such as Mucopolysaccharoidosis (MPS) type I within first 2 years of age. Adrenoleukodystrophy (early stages), before the onset of hard neurological signs, Immune deficiency disorders like severe combined immunodeficiency (SCID), chronic granulomatous disease, Wiskot Aldrich syndrome, osteopetrosis, fanconi anemia etc. This amount is inadequate to cover the costs of treatments for these diseases, which are actually needed more than once.
State governments have been given the discretion to provide for the treatment needed to manage diseases listed in Group 2. The policy does not give details on funding, allocation, responsibilities, and Government’s role in providing supportive care .
All this while, despite health being a state subject, the states have done nothing significant for rare disease patients; even in cases that have treatment as low as diet management. .
“The NPRD, 2021, is a mockery of the right to health each person in India enjoys, because it ignores the true needs of the rare disease community in India” said Prasanna Shirol, founder director, ORDI. “The lack of foresight and grounding in the rare disease community’s reality shines through the cold and thoughtless drafting of the NPRD 2021. A truly shocking thing, given the hundreds of High Court cases, individual representations, and representations spanning almost two decades by patient advocacy groups. But we will continue to fight on – till every person living with a rare disease, irrespective of age, or any socio-economic factors, has the right to health, he added.
ORDI is currently conducting discussions with their stakeholders to collate necessary information and submit an extensive report to ministry of health and family welfare (MoHFW) to review the policy, said Shirol. |
