Govt Hikes Budget for Rare Diseases, Focuses on SMA

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

India's efforts to combat rare diseases have intensified, with the government significantly increasing its budget for patient treatment from zero to INR 82.4 Cr in just three years.

This development was highlighted by Dr L Swasticharan, Additional DDG with the Directorate General of Health Services (DGHS), Ministry of Health and Family Welfare (MoH&FW), during SMArtCon2024, a two-day National Conference on Spinal Muscular Atrophy (SMA).

The conference coincided with the ongoing SMA Awareness Month and brought together healthcare professionals, researchers, and patients to discuss advancements and challenges in treating SMA and other rare diseases.

Additionally, Dr Swasticharan announced the MoH&FW's plan to establish a specialized Technical Expert Group dedicated to Spinal Muscular Atrophy, a rare genetic neuromuscular disorder that severely impacts physical strength by targeting motor nerve cells in the spinal cord.

"This group, named Tech MSA, will advise centers of excellence on rare diseases across India on how to address SMA effectively," he stated. The group will provide technical guidance and support, to replicate successful models for SMA treatment across other rare diseases in the country.

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. Swasticharan noted.

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.

Challenges & the Need for Synergy

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 Corporate Social Responsibility (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.

Call for Greater Support

Moumita Ghosh, Co-founder and Director of Family Support and Events at the Cure SMA Foundation of India highlighted the critical need for continued government support.

"Around 4,000 children are born with SMA in India every year, making it the number one genetic cause of death in infants," she explained.

Ghosh called for increased budgetary allocations for rare disease treatment, particularly for SMA patients who are often left without adequate resources.

"The treatment is prohibitively expensive, beyond the reach of most patients. While indigenous research is the ultimate solution, it will take decades. Meanwhile, we cannot allow current patients to deteriorate and die," she urged.

Rustam, an SMA patient, shared his perspective on living with the disease.

"SMA patients are achievers who give 200 percent to every endeavor because we have no other option. We are focused, determined, and capable of delivering exceptional value," he said.

Rustam called on society to provide opportunities for SMA patients to join the mainstream workforce and contribute as productive members. "We will not disappoint," he assured.