Rare disease patients throughout India have expressed their disappointment and anger towards the country’s new policy centered on rare conditions. One of their main concerns is that the policy changes do not accurately reflect the actual cost of treatment; the new plan only raises government support by ₹5 lakh (about $6,800). Other criticisms of the new plan demonstrate why it does not best help patients and even leaves some behind.

New Policy

The new policy aims to address a number of problems that the rare disease community face, such as a lack of viable treatment options, high costs, and minimal access. For example, the estimated annual cost of treatment for a child weighing 10 kg ranges anywhere from ₹10 lakh (about $13,600) to more than ₹1 crore (about $136,050).

This policy has been in the works since 2017 but was never actually implemented. Concerns about the cost and responsibility of the program have stopped it from ever actually helping patients. To address these problems, an expert group was put together and sent to analyze and fix them in 2018. As of January 2021, they finished their analysis and made the necessary changes.

Dividing Rare Diseases Into Three Groups

One of the first steps that the new policy made was to divide the category of rare disease – which contains over 7,000 conditions – into three distinct sections. The first group consists of diseases that are treatable at government tertiary care hospitals and are eligible to receive a one-time payment of up to ₹20 lakh for treatment. The second group is composed of patients whose care can be “considered” by the government if it is already managed by hormonal supplements or specific diets.

One of the biggest issues rises with the final group. The government gives them no special consideration or help, essentially leaving them to fend for themselves. These patients face life-long illnesses and often require treatment to meet a preferred quality of life. Many of them are children.

Prasanna Shirol is a co-founder and executive director of the Organisation for Rare Diseases India, and he has seen the impact of this policy firsthand. His daughter lives with Pompe disease; she was diagnosed fifteen years ago at age seven. Now, she lives in a “semi-comatose state.” Her father states that the government does not understand the true experience of rare disease patients, and their new policy directly reflects that.

Shirol and other concerned patients and family members have already urged the Health Ministry to grant immediate funding of ₹80 to ₹100 crores while the rest of the program is implemented. This way, Group 3 rare disease patients can access the therapies they need to save their lives. They also call for:

• The creation of a 100-day rollout plan
• The modification of the new policy to prioritize the treatment of all rare disease patients
• The provision of matching grants to the State to better assist patients

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