Global Access to Zolgensma: Every Child Deserves a Chance at Life

Every child deserves the opportunity to live, grow, and thrive.

Spinal Muscular Atrophy (SMA) is a rare genetic disease that progressively damages the motor neurons responsible for movement. Without timely treatment, infants and young children with severe forms of SMA can experience profound muscle weakness, loss of motor function, respiratory complications, and significantly shortened life expectancy.

Medical innovation has transformed what is possible. Zolgensma, a one-time gene therapy developed by Novartis, has provided hope to many eligible children and their families. We recognize the extraordinary scientific achievement and the years of research and investment required to develop this treatment.

However, for many families around the world, access remains out of reach.

Children in numerous countries—including parts of the Middle East and Africa (MEA)—face barriers such as high treatment costs, limited reimbursement, lack of national treatment pathways, and restricted availability. Because the greatest benefit of treatment depends on receiving it early, delays can have lifelong consequences.

This petition is not a criticism of scientific innovation or the development of life-changing medicines. Instead, it is a respectful call for collaboration to help ensure that more eligible children have a realistic opportunity to receive treatment.

We respectfully call upon Novartis, governments, healthcare systems, insurers, philanthropic organizations, and international health leaders to work together to:

Expand access to Zolgensma for eligible children around the world.
Explore fair and sustainable pricing approaches that improve affordability while supporting continued innovation.
Expand humanitarian, compassionate-use, and managed-access programs where appropriate.
Strengthen partnerships with governments, insurers, hospitals, and nonprofit organizations to improve treatment availability.
Increase transparency about available access programs and eligibility pathways.
Support practical reimbursement and financing solutions that allow more healthcare systems to provide treatment.
Medical innovation and patient access should advance together.

No eligible child should lose the opportunity to receive life-changing treatment simply because of where they live or because their family cannot overcome financial or systemic barriers.

Every signature represents hope for another child.

Every shared petition raises awareness.

Together, we can encourage meaningful collaboration that helps more children living with SMA receive the treatment they need—before time runs out.

Please sign and share this petition.