The delay in implementing this policy has left parents of nearly 999 children in Group 3 of the rare diseases category, registered on the government’s rare disease crowdfunding portal, worried.
Ashish and CA Kirti parents of baby Akirti a SMA type 1 patient
It has been 18 months since KEM was selected as a centre of excellence, one of 11 across India, for treating rare diseases in four states: Maharashtra, Madhya Pradesh, Chhattisgarh and Gujarat. However, the funding of Rs 5 crore for infrastructure and R50 lakh under the national policy for rare diseases remains only on paper.
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The delay in implementing this policy has left parents of nearly 999 children in Group 3 of the rare diseases category, registered on the government’s rare disease crowdfunding portal, worried.
There are approximately 7,000 known rare diseases worldwide, affecting around 8 per cent of the global population, with 75 per cent of these patients being children. There is a statement on the government digital portal for crowdfunding and voluntary donations for rare disease patients.
The Centre has established a crowdfunding portal as per the National Rare Disease Policy 2021. Still, it has raised a meagre amount, with only R2.86 lakh collected for the 999 patients registered in the Group 3b category. A person has been quoted in a report in this paper saying that crowdfunding cannot be a sustainable mechanism for life-saving or life-altering medicine. Lasting institutional and policy changes through government intervention are necessary.
We need the state and Centre to come up with a plan to release these vital funds. Voluntary donations are not sustainable in the long term. It is also extremely stressful for the patient’s family to run from trust to trust, donor to donor trying to raise funds.
Let there be a stakeholder meeting and a way to find a middle path, where some funds keep coming into the kitty while the bulk of it is allocated via the government.
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