Promises are futile if they fail to deliver. When the National Policy on Rare Diseases was introduced in 2017, it came with tall promises — creating a corpus fund at Central and State Level for part funding treatment of rare diseases, setting up of a Central Technical Committee (CTC) and individual State Technical Committees (STCs) to ease the process of patient applications, encouraging funding support from public sector undertakings (PSUs), and much more.

In a major setback to the millions of patients awaiting justice, the Ministry is now claiming that it is “not feasible” to implement the policy in a “resource-limited situation”. Even though the Centre stated before the court that a ₹100-crore corpus was created for treatment of rare diseases, in a recent turn of events, it admitted that no such fund was ever allocated.

“The other important difficulty in implementation is that though in the affidavit dated March 3, 2018 it was stated that a ₹100-crore corpus has been created under the NHM, no such corpus was created under NHM. This occurred under an honest mistaken belief that the funds under NHM could be earmarked,” the affidavit, filed by the Centre stated. It is time for the government to wake up to the fact that its “honest mistaken belief” has claimed many lives.

Now, if one chronicles the journey of the rare disease policy over the last one year, more than 100 children have lost their lives waiting for treatment and now the Ministry is turning away from the policy, saying it will be “reframed”.

For decades, the expensive and prohibitive nature of the treatment, untimely diagnosis and lack of insurance coverage have prevented rare disease patients from getting access to treatment. When the policy was launched, it raised many hopes. With the U-turn on the policy, the wait for action has become long and arduous for the patients and their families. No action has been taken on the 100-odd applications received by the rare disease cell in the last six months.

From the change of stand on the ₹100-crore corpus meant for providing relief to rare disease patients, to the lack of action on the policy recommendations, those implementing the National Policy on Rare Diseases have much to answer for. Millions of people are waiting for treatment. The big question now is can we really afford to “not afford” a policy that promises a fair treatment to those living with rare diseases.

“That though framed with the best intent, (the policy) had implementation challenges and gaps including the cost effectiveness of supporting such health interventions for resource limited situation which made it not feasible to implement, in the present shape,” states the affidavit.

Now, are we saying that India can build the world’s tallest statue which cost a mammoth ₹3,000 crore, but cannot treat its ailing population?

When India burst into the limelight with the world’s largest healthcare scheme — Ayushman Bharat, the road to affordable healthcare was greeted by nods of approval from both sides of the healthcare aisle — the people and policy-makers. However, the claims fall flat in the case of rare disease patients. While the Centre takes its time to reframe the policy, it is important that they make interim support available to patients seeking the treatment so that they are not left in the lurch. From its lax implementation to the eventual U-turn on the policy, one wonders what the value of life is in our country.

The writer is Co-Founder & Executive Director, Organisation for Rare Diseases India

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