Delhi HC Orders Center to Release INR 10 Cr to AIIMS for Rare Disease Treatment

Justice Pratibha M Singh, leading the bench, noted that stopping treatment would severely impact the patients' health.

The Delhi HC has directed the Center to release INR 10 Cr to the All India Institute of Medical Sciences (AIIMS) to continue the treatment of 18 patients suffering from rare diseases.

This order follows the Center’s request to revoke an earlier directive, which the court refused.

Justice Pratibha M Singh, leading the bench, noted that stopping treatment would severely impact the patient's health.

The court further instructed that the funds be released within three working days. Failure to comply would require the presence of Latha Ganapathy, Joint Secretary of the Ministry of Health and Family Welfare, at the next hearing on October 3.

The Center’s counsel argued that AIIMS had exceeded its allotted funds and that other centers of excellence also required financial support.

The court, however, emphasized that AIIMS Delhi plays a critical role in treating rare diseases. It was also noted that only INR 9 Cr of the INR 34 Cr previously granted to AIIMS had been spent, as the full costs of medicine procurement were yet to be reflected.

Dr Madhulika Kabra of AIIMS, attending virtually, explained that orders had been placed for medicines for the patients, and the continuation of treatment would be impossible without further funding.

Rapid Growth in Funding for Rare Diseases

The Indian government has made significant strides in supporting rare disease treatment through the establishment of a rare disease fund.

"In the fiscal year 2022-23, we provided support to 203 patients, amounting to INR 35 Cr, a substantial increase from zero funding just three years ago," Dr L Swasticharan, Additional DDG with the Directorate General of Health Services (DGHS), Ministry of Health and Family Welfare (MoH&FW) noted in a recent conference.

The budget for 2023-24 rose to INR 74 Cr, with the current fiscal year seeing an allocation of INR 82.4 Cr, of which INR 34.2 Cr has already been disbursed.

However, he acknowledged that these funds are still insufficient to meet the needs of all patients, emphasizing the government's commitment to leaving no patient behind.

Despite these advancements, Dr Swasticharan pointed out that awareness of rare diseases remains low, even among healthcare professionals.

"Few clinicians are actively working in this area, and there is a need for greater synergy between the government and the medical community to tackle this challenge," he said.

The government is also focusing on making drugs for rare diseases more accessible and affordable through indigenous research, production, and CSR funding.

"We are urging pharmaceutical companies to contribute funds to establish specialized clinics for rare diseases, where patients can receive the treatment they need," he added.

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