New Delhi: Organization for Rare Diseases India (ORDI) has expressed its disappointment with the National Policy for Rare Diseases, 2021 (NPRD 2021) released by the Union Health Ministry on March 30, 2021.
In a strong-worded statement, ORDI has lamented that the government failed to understand the key issues. “National policy for rare diseases is a long-awaited and long delayed document whose journey began in 2017. All the advocacy, angst, and anticipation has amounted to naught, for the rare disease community in India. This is because not much has been altered from the draft National Policy for Rare Diseases released in 2020. If anything, it is another iteration that fails to acknowledge and address the real challenges of rare disease patients and their families.
ORDI is of the opinion that there are many things woefully missing in the NPRD 2021. The statement further mentions, “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. Picture the scene: a person desperately in need of medical intervention or continued medicines, must themselves or with help from their family, organise fundraisers, so that they may continue living. A stark picture indeed, one that amplifies either the fact that the struggles of the rare disease community don’t matter, or worse, that the Government doesn’t believe it has a role to play in ensuring holistic, affordable care for all rare diseases. Persons living with rare diseases, irrespective of age, gender, economic status, caste, religion or another societal classification, have a right to dignified treatment, supportive care, and funding options to afford treatment and supportive care.”
“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,” says Mr. 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.”
ORDI is currently conducting discussions with the stakeholders to collate necessary information and submit an extensive report to the Ministry of Health and Family Welfare to review the policy.
Rare Disease Policy fails to meet the dire treatment needs of Rare Disease Patients
No specific funding allocated for the treatment of Rare Diseases (Group 2 and Group 3 disorders); rather it suggests relying on Crowdfunding which is not a practical solution!
Rare Diseases does have a definition! This will hamper the research, local drug development activities, and the long-term plan for the Rare Disease Community.
Group 2 disorders are left at the discretion of State whereas the State isn’t well equipped with knowledge, infrastructure or funding support system to tackle such disorders. States need guidance and directions from the Central Government.
For a country as huge as India, 8 Centres of Excellence for management of Rare Diseases is insufficient!