Hong Kong’s spinal muscular atrophy patients seek aid for injection therapy

Adult SMA patients in Hong Kong demand equal access to life-changing injection therapy, warning of irreversible decline without expanded subsidies. | Contesto: cronaca

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• Hong Kong’s spinal muscular atrophy patients seek aid for injection therapy

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HONG KONG – Patients living with spinal muscular atrophy (SMA) have issued a direct appeal to the Hong Kong government, urging an immediate expansion of subsidised medicine options for adults to prevent further physical deterioration and secure a better quality of life. The call was made at a press conference on Sunday by the Hong Kong Neuro-Muscular Disease Association, where individuals shared stories of decline after ageing out of paediatric care programs without affordable treatment. Lui Man-lam, president of the association, highlighted a critical gap in the current subsidy framework. While the government rolled out subsidies for oral SMA medications for patients aged 25 and above earlier this year, adult patients still lack access to publicly funded injection-based therapies. These injections, which work differently from the oral treatments, are often crucial for stabilising the progressive neuromuscular condition. "The oral medicine is a step, but it is not the only step needed," Lui stated, emphasising that a comprehensive treatment plan requires multiple therapeutic options. The condition, spinal muscular atrophy, is a genetic disorder that leads to progressive muscle wasting and weakness. Without effective treatment, patients experience a steady loss of motor function, which can severely impact mobility, breathing, and independence. Several patients at the conference described how their physical capabilities had significantly worsened during their transition to adulthood, a period when they lost the structured medical and financial support available during childhood. This decline, they argue, is not inevitable but a direct consequence of a healthcare policy that fails to cover all effective treatments for all age groups. The financial burden of the injection therapy is prohibitive for most families. The unsubsidised cost can run into hundreds of thousands of Hong Kong dollars annually, placing it far out of reach without government assistance. This creates a stark inequality, where younger patients or those covered under different schemes might receive the injections, while adults are left with a limited, and for some, less effective, oral...

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Categoria: cronaca