Spinal Muscular Atrophy (SMA) is a rare genetic condition that weakens muscles over time. While there is no outright cure, there are treatments available that can slow progression and improve quality of life. But SMA medication costs in South Africa are staggeringly high, making them inaccessible for most families. It’s heartbreaking to know that there is a treatment that could help, yet it remains out of reach simply because of the price tag.
If you’d like to support my journey, please visit the Kerry Walsh Trust, where donations go toward my ongoing medical care, equipment, and independence.
SMA Medications and Their Costs
Three main medications are approved worldwide for SMA, but each comes with extreme financial and accessibility challenges in South Africa.
Spinraza (Nusinersen): SMA medication cost in South Africa
- How it works: An injection into the spinal fluid that helps the body produce survival motor neuron (SMN) protein.
- Dosage: Four “loading doses” in the first two months, then one every four months for life.
- Cost: Around $750,000 (R13.5 million) for the first year, and $375,000 (R6.8 million) each year thereafter.
- Limitation: Lifelong treatment, extremely limited access locally, and not covered by most medical aids.
Zolgensma (Onasemnogene abeparvovec): Most expensive SMA medication cost
- How it works: A one-time gene therapy that replaces the faulty gene causing SMA.
- Dosage: Single infusion.
- Cost: $2.1 million (R38 million) — the most expensive drug in the world.
- Limitation: Works best if given before age two, with almost no access in South Africa.
Evrysdi (Risdiplam): Daily SMA medication cost in South Africa
- How it works: A liquid taken daily that boosts SMN protein production.
- Dosage: Daily, lifelong.
- Cost: $340,000–$750,000 (R6.1 million – R13.5 million) per year, depending on dosage.
- Limitation: Must be taken continuously, meaning costs never stop adding up.
Living with the Reality of SMA Medication Costs
As someone living with SMA, it’s difficult to put into words the weight of knowing these medications exist but are out of reach. It feels as though my life — and the lives of others with SMA — have been given a price tag. In South Africa, SMA medication costs make treatment unattainable for almost everyone. Families are left with heartbreaking choices: attempt to raise millions through fundraising or accept that treatment is impossible.
You can read more about my personal journey with SMA in my book Finding My Feet, where I share the realities of living with a rare condition and the resilience it takes to keep going.
Why Awareness of SMA Medication Costs in South Africa Matters
These medications represent hope, progress, and the possibility of living fuller lives. But without access and affordability, hope becomes something distant. Conversations about SMA medication costs in South Africa are vital to push for better access, medical aid support, and government intervention. No one’s life should come with such an impossible price tag.
I also share my story as a motivational speaker, raising awareness for accessibility, inclusion, and rare diseases. If your organisation, school, or event is looking for a speaker, I’d love to connect.
