Dhaka, Nov 02 (V7N)- Parents of children with the rare disease Spinal Muscular Atrophy (SMA) are seeing new possibilities as Bangladesh moves toward establishing a comprehensive neuromuscular disease treatment center. SMA, a genetic disorder that impacts the central nervous system, peripheral nerves, and voluntary muscles, primarily affects infants, with most of the affected nerve cells located in the spinal cord.
Until recently, SMA treatment options in Bangladesh were limited. However, due to initiatives like awareness campaigns and the launch of specialized clinics, there is renewed hope for affected families. A fully integrated 'Neuromuscular Disease Treatment Center' has now opened at the National Institute of Neurosciences and Hospital in Agargaon, designed to offer a multidisciplinary approach to SMA care and bring critical services under one roof. Medical experts at the center have committed to developing a cohesive system to support SMA treatment in the country.
Prominent neurologist Professor Dr. Quazi Deen Mohammad shared that several drugs have been globally approved to treat SMA, with the oral drug Risdiplam recently approved in Bangladesh. Efforts, including government collaboration, are underway to make treatments affordable. “We are hopeful that the cost of these medications will become accessible to more families soon,” he remarked, urging the wealthy to lend support to this cause.
In a recent statement, Professor Dr. Md. Badrul Alam noted the extreme costs associated with SMA treatments worldwide, with a single vaccine costing around BDT 220 million. While the price of an approved oral drug in Bangladesh has decreased to BDT 300,000, regular use remains financially challenging. He emphasized the importance of government support, suggesting that a national patient registry could help coordinate efforts effectively.
Cure SMA Bangladesh's Vice-President Hasan Mahmud highlighted that while SMA is currently incurable, the establishment of this specialized clinic represents a significant achievement. Cure SMA Bangladesh plans to sustain and expand these initiatives, having already organized various awareness activities, including seminars and virtual consultations.
Experts explained that SMA, a rare genetic disorder marked by motor neuron loss, can vary from type one to type four based on severity. Early intervention, ideally before symptoms manifest, is key to effective treatment outcomes and can be facilitated through newborn screening. With proper care, therapy, and medications, affected children can lead a relatively normal life. Prenatal testing of amniotic fluid can also detect SMA risk, underlining the importance of awareness in preventing and managing this disease.
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