ISLAMABAD: Health leaders and policymakers have called for urgent action to strengthen patient support, accelerate policy reform and implement long-term solutions for individuals living with Spinal Muscular Atrophy (SMA), a progressive genetic disorder affecting muscle function.
The event, titled “From Possibility to Policy: Shaping the SMA Future,” was organised by Strive Eradication of Disability Foundation (Strive). It was attended by health officials, clinical experts, pharmaceutical representatives, donors, philanthropists and families living with SMA.
Speakers expressed concern that while advances in medical science have transformed SMA from an untreatable condition into a manageable one, many patients still face significant barriers due to the high cost of treatment and limited systemic support.
SMA is a rare genetic condition that causes muscle weakness by affecting the motor neurons that control movement. It primarily impacts infants and young children and is one of the leading genetic causes of infant mortality.
Speaking on the occasion, Khyber Pakhtunkhwa Health Minister Khaliq Ur Rehman pledged the provincial government’s full support to families living with SMA. He said that, in addition to the Sehat Card programme, which provides financial assistance for medical treatment, the Khyber Pakhtunkhwa government also extends support to patients battling high-cost and life-threatening diseases. He noted that, with cabinet approval, special grants have been released for patients who are unable to afford expensive treatments.
Dr Gul-e-Sehar, clinician and researcher, observed that awareness about SMA remained extremely limited, even among healthcare professionals. She said the shortage of specialised expertise and the lack of accessible genetic screening services further delayed timely diagnosis.
Dr Waseem Ur Rehman, paediatric neurologist at Shifa International Hospital, emphasised that early diagnosis was critical, as the loss of motor neurons in SMA is irreversible and can lead to progressive deterioration in muscle function and quality of life.
Waseem Rafiq, programme and partnership manager at Strive, said the organisation was receiving requests for assistance from Balochistan, interior Sindh, South Punjab and remote areas across the country. However, due to limited financial resources, it was not possible to extend support to every patient in need.
Speaker Muhammad Yasir Khan said there was a time when children diagnosed with SMA tragically lost their lives due to the absence of medical options. “While the advent of new therapies has transformed the treatment landscape, many children continue to die today because of inadequate support systems and the lack of integration of SMA into the national healthcare system,” he added.
Published in Dawn, March 3rd, 2026
