ISLAMABAD: The Khyber Pakhtunkhwa (KP) government is mulling over to provide free of cost treatment to patients suffering from Spinal Muscular Atrophy (SMA), a rare and debilitating genetic disorder.

The good news was shared at an event organised in Islamabad by the Strive Eradication of Disability Foundation (SEDF), a not-for-profit organisation working for improving the quality of life of Persons with Disabilities (PWDs).

The founding chairman of SEDF Mohammad Yasir Khan said the proposal was shared with the officials of the KP government about two months ago and they have agreed to enter into a partnership with the foundation.

“The health department of KP government has asked for the budget summary for allocations and hopefully in a year or so patients will start getting treatment.

“Negotiations with other provincial governments are also in the process and they will follow suit,” he said.

The President of SEDF Majid Qureshi said so far the foundation has raised about Rs34 million to make possible the expensive treatment of 36 patients after entering in a partnership with a pharmaceutical company that helped the patients in manifolds.

It was informed at the event titled “Journey for SMA” that 30 patients are still waiting for the treatment that is expensive even for an upper middle class family. Currently, only one medicine is available in Pakistan on 80 percent subsidised rates that too is beyond the reach of a large segment of Pakistanis.

There was a time when SMA was the single largest cause of the child deaths but with the breakthrough of new medicines now lives can be saved if medicines can be provided timely to the patients, said Yasir Khan.

He said the foundation has made possible to provide medicine to 14 patients this year despite its meagre resources.

A father of a minor patient, Haris, shared his ordeal of being on his own with no support from the government and the society.

He said his two year old daughter was getting treatment because of SEDF and the foundation gave hope and a platform to people like him who have nowhere else to go.

Published in Dawn, September 29th, 2024