Patient bodies seek Russia-like funding for rare diseases treatment

A leading rare disease group urges India to adopt a Russia-style dedicated fund and tax-based model to ensure sustained treatment support beyond the current ₹50-lakh cap

As Russian President Vladimir Putin concludes his visit to India, the Organisation for Rare Diseases India (Ordi), a national umbrella organisation representing patients with rare diseases, has asked the Centre to undertake Russia-like programmes to ensure proper funding for patients with rare diseases.

 

Prasanna Shirol, co-founder and executive director of Ordi, told Business Standard that the body has sent recommendations to launch a Rare Bharat Mission to the health ministry and the Prime Minister’s Office.

 

This comes even as India is facing regulatory difficulties in providing treatment under the Centre's National Policy for Rare Diseases, with the Delhi High Court recently asking the government to create a permanent National Fund for Rare Diseases (NFRD) to ensure uninterrupted care of patients.

 

“Since 2021, Russia has created a fund called the Circle of Kindness, which is completely government initiated,” Shirol said.

 

As part of it, the Russian government has started charging 2 per cent extra income tax from high-net-worth individuals (HNIs) who earn more than 50 million roubles (around $80,000).

 

“This 2 per cent extra amount from the government goes to this rare disease fund, where they are able to treat costly rare diseases. They have treated more than 22,500 patients according to information available from their website, and the fund has a fund surplus of more than $2 billion,” Shirol said.

 

The fund also includes a component for purchasing the high-end medical equipment required for the patients.

 

He added that the organisation has suggested a proposal to launch a similar national scheme on the lines of the Russian scheme for rare diseases to Prime Minister Narendra Modi.

 

“The government can start with an initial fund of around Rs 2,000 crore, and then slowly transfer the amount collected through special initiatives like the Rare Bharat Mission. It is left to the government,” he added.

 

Shirol said the Centre can also counter the lack of awareness among companies by asking the Ministry of Corporate Affairs or the finance ministry to share some portion of their corporate social responsibility (CSR) funds towards the rare disease mission.

 

In contrast, India covers 63 rare diseases under its National Policy for Rare Diseases (NPRD), where patients are given a one-time financial assistance of Rs 50 lakh. These diseases have further been divided into three groups.

 

Highlighting that the fund is not enough for patients, Shirol said the Rs 50 lakh per patient fund may not be sufficient for some patients even for a few months or a one-time dosage.

 

He added that while care for Group 1 and Group 2 patients may cost in a range of Rs 5 lakh to Rs 20 lakh per patient per year, Group 3 patients, on the other hand, can see treatment costs go beyond the Rs 50 lakh earmarked under the NPRD.

 

Group 1 diseases are those where a one-time treatment is available or an intervention like bone marrow and renal transplantation, whereas Group 2 diseases need a long-term, definitive treatment.

 

Group 3 includes lifelong conditions such as lysosomal storage disorder, neurology conditions, cystic fibrosis and spinal muscle atrophy (SMA).