The establishment of a specialised treatment center for Spinal Muscular Atrophy (SMA) in Bangladesh offers new hope to families grappling with this disease. SMA is a rare genetic disorder that affects muscle movement, commonly showing in childhood and often leading to severe physical limitation and dependency. Previously, families in the country had limited access to effective treatment, with many left to rely on expensive treatment abroad or to manage symptoms without enough support. Now, with the opening of the Neuromuscular Disease Treatment Centre at the National Institute of Neurosciences and Hospital in Agargaon, a brighter future is evolving for SMA patients.
SMA impacts motor neurons— the cells responsible for controlling spontaneous muscle movement— often making even basic actions, such as swallowing and breathing, a significant challenge. As the disease progresses, it severely limits the patient’s mobility and quality of life, requiring specific medication and consistent care to manage symptoms effectively. This new facility represents a crucial step, consolidating medical services and expertise under a roof to provide SMA patients with the complete care they require.
Access to SMA treatment remains a main challenge globally, primarily due to the high cost of medication. SMA is among the most expensive diseases to treat and the financial burden is often vast for families. However, a recent development offers some relief. Renowned Neurologist Professor Quazi Deen Mohammad announced that an oral drug (Risdiplam) for SMA has been approved in the country. Although the Risdiplam’s cost around Tk three lakhs is still high, it provides a more affordable alternative to other treatments, which may cost much. He expressed hope that further reduction in drug prices could make this life-changing medication accessible to more patients. The support of government and non-governmental performers is necessary to make these treatments affordable for all.
Bangladesh’s progress in establishing SMA
treatment facilities is a
positive sign of the
commitment to providing this right
Government’s intervention is crucial in making SMA treatment affordable and accessible. Professor Badrul Alam stressed the significance of subsidies and price controls to ease the financial burden on families. He also underlined the imperative need for a national registry of SMA cases, which would assist policymakers assess the prevalence of the disease and allocate resources. Such a registry would be helpful in understanding the range of SMA in the country and could also draw global support and funding. Besides, he called on well-off people and organisations to support financially dealing families, recognising the collective responsibility that society bears toward its vulnerable members
Prompt intervention is crucial in improving outcome for SMA patients, as treatment commenced before symptoms appear may lead to better results. The experts recommend newborn screening as a critical first step, as initial diagnosis allows doctors to start therapy before muscle loss movement. Furthermore, prenatal testing, such as amniocentesis, can detect SMA in unborn kids, permitting parents to plan ahead. For infants already affected, a combination of medication, physical therapy and respiratory support can help maintain motor function, improving their overall quality of life.
Access to healthcare, with specialised care for rare diseases, is a fundamental right that all citizens deserve. Bangladesh’s progress in establishing SMA treatment facilities is a positive sign of the commitment to providing this right. However, sustained government support, advocacy from organisations and contributions from the general public are crucial to make SMA care accessible to all who need it. Such a multifaceted approach may help reduce the physical, emotional and financial strain on affected families.
