Spinal muscular atrophy patients have urged the Hong Kong government to expand subsidised medicine options for adults to increase their chances for a better quality of life, with some saying their condition deteriorated after growing up without affordable care.
Lui Man-lam, president of the Hong Kong Neuro-Muscular Disease Association, said at a press conference on Sunday that while oral medicine subsidies for those aged 25 or above were rolled out early this year, adult patients still lacked public funding for injection therapy to improve their condition.
“We are advocating equal subsidies for both treatment options – not out of preference but because of individual medical needs,” Lui said.
Spinal muscular atrophy is a hereditary neuromuscular disease in which motor neurons in the spinal cord and lower brainstem progressively deteriorate, weakening muscles and impairing movement, swallowing and breathing.
Hong Kong began to subsidise injection treatment for spinal muscular atrophy patients under the age of 18 in 2018, expanding it the next year to two more disease types via the Community Care Fund.
Oral medication for the disease was registered in 2021 and supplied to child patients. In late 2025, those over the age of 25 could register for it, with subsidies from the fund available from the first quarter of this year.
