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Delhi High Court asks Indian government to provide greater focus on rare disease

Rare disease policies in India have been scarce.

The Indian government has been asked to increase efforts to tackle rare diseases by March 31st by the Delhi High Court. 

Millions of people may be living with more than 7,000 illnesses categorised as rare diseases across India. With this in mind, the government has been asked to finalise and operationalise progressive policy implementation that involves the provision of a National Health Policy for rare diseases, and the set up of a National Consortium for Research, Development and Therapeutics.

“The National Health Policy for Rare Diseases, 2020 shall be finalised and notified by the Government of India on or before March 31st,” the Delhi High Court told the government. In its action, the High Court has asked for the government’s entire unspent budget allocated to rare diseases for the past three years to be immediately moved into the rare diseases fund. 

This is also to be backed by demands for increased spending for the upcoming year, and financial incentives for the manufacturing of orphan drugs contributing towards treatment of rare diseases in a country that, to date, has had little to no budget for rare disease. Despite orphan drugs being used to treat diseases that affect no more than five lakh persons in India, according to clinical trial data from 2019, they are no less fundamental. 

India’s current treatment of those affected by rare diseases

In researching the understanding rare genetic diseases in low-resource regions in India, a paper published in Frontiers in Genetics wrote, “It is an irony that, unlike other developing countries, India is lagging behind in context to regulation of RDs-based R&D [research and development] due to several key issues that need to be urgently addressed,” including the need for “strong legislative policies and initiatives…from government and other institutions.”

Yet to date, very little uptake on treatment for rare disease sufferers exists in India, with slow action leaving a clear gap in public health treatment for a country that homes nearly one-fifth of the individuals living with rare disease globally

Previous movement has seen the Union Ministry of Health and Family Welfare release a National Policy for Treatment of Rare Diseases in 2017, detailing policies for the treatment of rare disease. It outlined the possible provision of financial assistance for rare disease patients and recognised them under three categories: those requiring one-time but curative treatment; those with diseases that require long-term treatment but where the cost is low; and those needing long-term treatments but require high cost. 

The 2017 draft was subsequently replaced in January 2020, with a new draft for National Policy on rare diseases treatment. Nonetheless, India’s treatment of rare disease has still been considered a ‘blind spot’ amongst its approach to public health. This updated legislation contained acknowledgment of the cost of living with rare disease, recognising that treatment may vary INR ten lakh to more than INR one crore per year, with lifelong treatment – the cost of which increases with age. However, as Health Issues India previously reported, the 2020 draft policy has been criticised thoroughly by advocacy groups arguing that – in many cases – the Bill offers no support to those affected at all.

Given that India has long lacked that legislation that can effectively create a patient-friendly diagnostic system and increase funding for research and development, the finalisation of a new rare disease policy for India for the upcoming year – and those beyond – offers much-needed hope. With it, there is the possibility of improvement for those affected by rare diseases. But until March 31st, we must wait to see the extent of the government’s progress on this front.

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