The Khyber Pakhtunkhwa (KP) government is reviewing a proposal to offer free treatment for patients suffering from Spinal Muscular Atrophy (SMA), a rare and often debilitating genetic condition.
The initiative, spearheaded by the Strive Eradication of Disability Foundation (SEDF), comes as part of broader efforts to support persons with disabilities (PWDs) and is expected to make lifesaving treatments more accessible.
During an event in Islamabad organised by SEDF, the foundation’s founding chairman Yasir Khan stressed the critical need for timely intervention. “SMA was once the leading cause of childhood deaths,” said Khan. “Recent medical breakthroughs now offer hope, but treatment must be provided promptly to save lives.” Despite limited resources, SEDF has managed to facilitate treatment for 14 patients this year alone.
KP govt and SEDF partnership to provide lifesaving treatment
The proposal to offer free treatment for SMA patients was presented to KP officials two months ago. Yasir Khan revealed that provincial authorities had expressed a willingness to collaborate with the foundation. “The KP health department has requested a budget summary for allocation,” he said. “Within a year or so, we expect patients to begin receiving treatment.”
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The foundation is also in discussions with other provincial governments, which are expected to follow KP’s lead. SEDF President Majid Qureshi shared that the nonprofit has raised approximately Rs34 million through a partnership with a pharmaceutical company. This has enabled the treatment of 36 patients, but the need remains high.
“Thirty patients are still awaiting treatment, which remains prohibitively expensive even for upper-middle-class families,” Qureshi said. While one medicine is available in Pakistan at a subsidised rate of 80 per cent, it is still unaffordable for many.
At the event, Haris, the father of a two-year-old SMA patient, shared his personal struggle of dealing with the illness in the absence of government support. “Without SEDF, we had no hope,” he said, expressing his gratitude for the foundation’s assistance in his daughter’s ongoing treatment.