The Khyber Pakhtunkhwa (KP) government is considering offering free treatment for patients with Spinal Muscular Atrophy (SMA), a rare and debilitating genetic disorder.
This positive development was announced during an event in Islamabad, organized by the Strive Eradication of Disability Foundation (SEDF), a nonprofit organization dedicated to improving the lives of Persons with Disabilities (PWDs).
SEDF’s founding chairman, Mohammad Yasir Khan, shared that the proposal was presented to KP government officials two months ago, and they have agreed to collaborate with the foundation. “The KP health department has requested a budget summary for allocation, and within a year or so, we expect patients to begin receiving treatment.”
He also mentioned that discussions with other provincial governments are ongoing, and they are expected to follow KP’s lead.
Majid Qureshi, the president of SEDF, revealed that the foundation has raised around Rs34 million so far, enabling the treatment of 36 patients through a partnership with a pharmaceutical company that provided substantial support. However, 30 patients still await treatment, which is costly even for upper-middle-class families. Only one medicine is available in Pakistan at an 80% subsidized rate, yet it remains unaffordable for many.
Yasir Khan noted that SMA was once the leading cause of childhood deaths, but recent breakthroughs in medicine can save lives if treatment is provided promptly. Despite limited resources, the foundation has provided treatment to 14 patients this year.
At the event, Haris, the father of a young patient, shared his struggle of facing the illness without any support from the government or society. He expressed his gratitude to SEDF, which has given him hope and a platform to seek help for his two-year-old daughter’s treatment.
