A comprehensive five-year strategic plan to eradicate Spinal Muscular Atrophy (SMA), a genetic disorder causing progressive muscle weakness that was once a leading cause of infant mortality, was launched at a ceremony titled ‘Strive Towards the SMA Endgame.
The event was organized to raise awareness and funds for the disease.
The Strive Eradication of Disability Foundation (SEDF), a not-for-profit organization working for improving the quality of life of Persons with Disabilities (PWDs), had organized the event.
The plan proposes countrywide awareness campaigns, access to diagnosis, treatment and research facilities to wipe out the disease in a phased manner in collaboration with the governments, donors and research organizations.
While addressing the event, the founding chairman of SEDF Muhammad Yasir Khan said the plan was a commitment to ensure that every patient suffering from SMA in Pakistan receives the treatment they deserve.
The governments have been providing no support due to high costs of treatment, he complained saying the Foundation is a trailblazer in the field and providing expensive treatment mainly from pharmaceutical partnerships and donations.
Pakistan lacks proper screening, early diagnosis, and access to treatment and this strategic plan outlines how we will change that, he shared.
He said the disease can be prevented by expanding genetic screening, newborn testing, and early detection.
And advancing research in artificial intelligence, cutting-edge treatments, and emerging medical technologies can pave the way towards a permanent cure of SMA.
Strive Life Club, a treatment fund for FDA-approved drugs, was also constituted to provide free of cost treatment to the patients who are in need of medication.
The plan calls for establishing a permanent SMA Care System by institutionalizing care in national healthcare policies, insurance coverage for SMA patients, ensuring dedicated long-term funding, infrastructure, and research initiatives.
It was also announced to establish first ever state of the art research and care centre of the disease in Pakistan.
Haris Tariq, father of a minor patient, said Strive Foundation was the only hope for parents like him since it’s the only organization supporting such patients so that they can live a better life without or minimal physical dependence on others.
He said the disease is increasing gradually and there is a dire need to accelerate the efforts to take preventative measures and provide diagnosis and treatment facilities.
He urged the donors to come forward and support the organization so that more patients can benefit from this miracle drug.
He was of the view that people should prioritize their donations and the highest critical patients struggling for their lives deserve the most of donations instead of buildings and infrastructures of mosques and seminaries.
HareemShoaib, 11, suffering from SMA type-2 has been receiving required doses of medicines from the Foundation.
She is in 6th grade.
She shared that she can now walk, sit and able to continue her studies properly due to the uninterrupted treatment.
