Delay in Implementing Rare Diseases Policy Leaves Parents of 999 Children Worrying

Key Highlights :

1. The government has established a crowdfunding portal for rare diseases, but only R2.86 lakh has been raised so far.

2. Families of patients with rare diseases are stressed because they are constantly trying to raise money from donors.

3. The government needs to release more funds to support rare disease patients.

     The rare diseases category is a group of 7,000 known diseases worldwide, affecting around 8 percent of the global population, with 75 percent of these patients being children. In India, the government has established a crowdfunding portal as per the National Rare Disease Policy 2021 to help finance the medical treatments of these children. However, the implementation of the policy has been delayed, leaving the parents of nearly 999 children in Group 3 of the rare diseases category registered on the government’s rare disease crowdfunding portal worried.

     The Centre had selected King Edward Memorial (KEM) Hospital in Mumbai as a centre of excellence for treating rare diseases in four states: Maharashtra, Madhya Pradesh, Chhattisgarh and Gujarat, 18 months ago. The funding of Rs 5 crore for infrastructure and R50 lakh under the national policy for rare diseases remains only on paper. As of now, the crowdfunding portal 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 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. The state and Centre must come up with a plan to release these vital funds. Voluntary donations are not sustainable in the long term and it is extremely stressful for the patient’s family to run from trust to trust, donor to donor trying to raise funds.

     It is important for the stakeholders to come together and find a middle path, where some funds keep coming into the kitty while the bulk of it is allocated via the government. This would help ensure that the medical treatments of these 999 children are funded and their parents can get some much-needed relief. Moreover, it would make sure that the medical treatments of these children are not dependent on the goodwill of others.

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