To,

The Honorable Prime Minister of India,
Shri Narendra Modi,
Prime Minister's Office,
South Block, Raisina Hill,
New Delhi - 110011

Respected Sir,

Subject: Urgent Appeal for Government Support in Providing Free Treatment and Research Funding for Spinal Muscular Atrophy (SMA)

We, the citizens of India, write to you with a deep sense of urgency and hope, appealing for your immediate intervention to address the critical issue of Spinal Muscular Atrophy (SMA). SMA is a rare genetic disorder that leads to progressive muscle weakness and is often fatal without timely and effective treatment. The cost of the only available treatment for SMA, a single dose of which is approximately INR 17 crore, is prohibitively expensive for most families.

Given the gravity of this situation, we humbly request the Government of India to consider the following measures:

Free Access to SMA Treatment: Establish a fund similar to the PM CARES Fund or the Disaster Relief Fund, dedicated to providing free access to life-saving medications for SMA patients. This initiative could be supported by contributions from the corporate sector, public donations, and budget allocations.

Research Funding for SMA: Allocate substantial funding, approximately INR 200 crores, towards research for developing alternative and affordable treatments for SMA within India. This investment would not only reduce dependency on expensive foreign drugs but also position India as a leader in genetic and rare disease research.

Corporate and Philanthropic Contributions: Encourage and facilitate contributions from various companies and philanthropic organizations towards the SMA treatment fund. By leveraging CSR (Corporate Social Responsibility) initiatives, significant resources can be mobilized to support this cause. Given the vast financial resources within our corporate sector, as evidenced by movie budgets reaching 1000 crores and sports players being auctioned for 20 crores, it is reasonable to urge these entities to also contribute to critical healthcare needs. Corporates should be encouraged to support research efforts or provide funds on a case-by-case basis to ensure that no child is denied life-saving treatment due to financial constraints.

Long-term Healthcare Policy: Integrate rare diseases like SMA into the broader healthcare policy framework, ensuring that treatments for such conditions are covered under national health schemes and insurance policies.

We believe that the Government of India has the capacity and responsibility to support its citizens in times of dire need. The financial burden of treating SMA should not fall on the shoulders of affected families alone. It is our collective responsibility to ensure that every child suffering from SMA has access to the necessary medical treatment and care.

This plea is a heartfelt request from the people of India, urging you to take immediate and decisive action to save the lives of children suffering from SMA. We trust in your leadership and compassion to address this critical healthcare challenge.

Thank you for your attention and consideration.

Sincerely,
Care and Welfare Foundation