Islamabad, Sep 30: KP Government Announces Free Treatment for Rare Genetic Disorders
A significant announcement was made during an event in Islamabad organized by the Strive Eradication of Disability Foundation (SEDF), a nonprofit focused on enhancing the lives of Persons with Disabilities (PWDs).
Mohammad Yasir Khan, the founding chairman of SEDF, revealed that a proposal was submitted to officials in the Khyber Pakhtunkhwa (KP) government two months ago, and they have agreed to partner with the foundation.
He stated, “The KP health department has requested a budget summary for funding, and we anticipate that patients will start receiving treatment within a year.”
Khan also indicated that talks with other provincial governments are ongoing, and they are expected to follow KP’s example.
Majid Qureshi, president of SEDF, mentioned that the foundation has raised approximately Rs34 million, enabling the treatment of Rare Genetic Disorders 36 patients through a collaboration with a pharmaceutical company that offered significant assistance.
However, 30 patients are still waiting for treatment, which remains a financial burden even for upper-middle-class families. Currently, only one medication is available in Pakistan at an 80% subsidized rate, yet it is still unaffordable for many.
Yasir Khan pointed out that spinal muscular atrophy (SMA) was historically a leading cause of childhood mortality, but recent medical advancements can save lives if treatment is administered promptly.
Despite limited resources, the foundation has managed to treat 14 patients this year.
At the event, Haris, the father of a young patient, shared his challenges in facing the illness without governmental or societal support. He expressed his appreciation for SEDF, which has provided hope and a platform to seek assistance for his two-year-old daughter’s treatment.
