Johannesburg, South Africa – August 2024 – Spinal Muscular Atrophy (SMA) is a rare and devastating genetic disorder that affects the motor nerve cells in the spinal cord, leading to progressive muscle wasting and weakness. Globally, SMA has become a critical focus within the medical community, but in South Africa, awareness, diagnosis, and treatment options remain alarmingly limited.
SMA is a genetic disease that affects approximately 1 in 10,000 live births globally. The condition is classified into different types based on the patients’ age of onset and severity, with Type 1 being the most severe form. SMA symptoms are mainly characterised by patients experiencing muscle weakness, breathing problems, swallowing, and a general loss of motor functions. In situations in which SMA is not diagnosed or treated early enough, it can become fatal.
In South Africa, where access to medical resources and general awareness about rare conditions is quite low, the situation is further magnified. There are treatment options for SMA that are offered and readily available, but they are priced relatively high.
The Heartbreaking Story of Cobus van der Walt
Cobus van der Walt is a 14-month-old baby from South Africa whose journey with SMA began weeks after birth. Four weeks into the birth of their baby boy, his parents started to feel that something was not quite right. Even though they did not waste any time visiting doctors, physicians failed to catch the condition in its early stages-a sign of overall unawareness of the disease in South Africa.
His parents had to resort to seeking help from Cobus’ grandparents for assistance with the costs when his condition began to deteriorate. Cobus’ grandparents used their retirement funds twice, desperate to cover the soaring costs of the treatment. Even then, when such resources ran out, Cobus' parents found themselves at the mercy of extended family members to borrow money to buy the dose that might give their child a fighting chance. Currently, a dose of Cobus' treatment costs R136,906.59-a cost that few families can hardly bear.
A Beacon of Hope: The Story of Kevan Chandler
Kevan Chandler, a man living with SMA, has become a symbol of hope and resilience for those affected by this rare condition. Despite the severe physical limitations imposed by SMA, Kevan has led an extraordinary life. He is an author, speaker, and adventurer who has travelled the world, all while living with the same condition that now threatens young Cobus' life.
Kevan’s story is a powerful testament to what is possible with the right support and treatment. Through perseverance and the help of his friends, Kevan has defied the odds, proving that a diagnosis of SMA does not mean the end of a fulfilling life. His story is not just an inspiration—it is evidence that treatments can significantly enhance the quality of life for those with SMA.
For Cobus, the progress he has made since starting treatment offers a similar glimmer of hope. Like Kevan, Cobus has the potential to defy the limitations of SMA, but only if he receives the continued medical care he so desperately needs. Kevan Chandler’s journey should serve as a compelling reference for why Cobus' treatment must not be interrupted. With the right support, Cobus too can lead a life filled with possibility and hope.
The Medical Scheme's Refusal: A Question of Cost Over Care
The van der Walt family’s experience raises a troubling question: How can a medical scheme, which has benefited from years of loyal membership, turn its back on a life-threatening condition like SMA? Cobus' mother, who has been with the same medical scheme for years due to her own battle with diabetes, is devastated by their refusal. She has paid her premiums faithfully, believing that when the time came, the scheme would stand by her and her family.
Yet, instead of support, Cobus' parents were met with cold calculations and a refusal to acknowledge the value of their son’s life. The medical scheme's decision not only disregards the progress Cobus has made but also suggests a chilling disregard for the lives of those they are meant to protect.
Even with being on a top tiered Comprehensive plan, the Medical Scheme found that due to the treatment not being a Prescribed Minimum Benefit, they were not obligated to fund. This reiterates the view that Schemes have taken the approach to only fund what they are obligated to, and not what is expected from them by their members. Its no secret that medical aid memberships are a grudge purchase for most families, yet, the premium is paid every month on the expectation that the Scheme will be there to assist members in the event of a catastrophic health incident.
Furthermore, it needs to be understood that the list that governs PMB's is in dire need of updating, so that conditions including SMA, and many other rare diseases, can be included. This is the responsibility of Council for Medical Schemes, and the Health Minister, and is legislated to be reviewed every 2 years. Considering the Government's shift towards National Health Insurance (NHI), it remains to be seen if the PMB list will ever get the much needed review.
A Call for Compassion: Why Lives Should Matter More Than Money
The van der Walt family's story is a powerful reminder that medical schemes are not just about numbers—they are about people, families, and lives. The decision to withhold funding for Cobus' treatment based on financial calculations rather than medical necessity is not only a betrayal of the family's trust but also a stark indication of the challenges many South Africans face when dealing with rare diseases, and high cost treatments.
For Cobus and his family, every day without the proper medication is a day of uncertainty and fear. The medical scheme's refusal to fund his treatment places an unbearable strain on his parents, who are left to wonder if they will be able to afford the next dose that could keep their son alive.
As a society, we must ask ourselves: What is the true cost of a life? And when will we start valuing human life above all else? The van der Walt family's fight is not just for Cobus—it is a fight for every child, every parent, and every individual who has ever believed in the promise of care and compassion.
A Call to Action: Improving SMA Awareness and Support in South Africa
The story of Cobus van der Walt is not an isolated one. It highlights a broader issue in South Africa’s healthcare system: the urgent need for increased awareness, early diagnosis, and comprehensive support for families affected by SMA. Medical professionals must be better equipped to recognise the symptoms of rare diseases like SMA, and the government, along with private medical schemes, must step up to provide the necessary financial support for life-saving treatments.
For Cobus and countless other children like him, time is of the essence. Without proper funding and access to treatments, their futures remain uncertain. We urge the medical community, policymakers, and the public to rally together to support these families, raise awareness about SMA, and advocate for the changes needed to ensure that every child in South Africa receives the care they deserve.
Written by: Marise Mubili
Rare Diseases South Africa
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