ABOUT JAMILA SULTANA FOUNDATION
Since its inception, Jamila Sultana Foundation (JSF) is striving hard for treatment and prevention of thalassemia by providing quality services to maximum people i.e. patients from most parts of Pakistan including FATA and AK. The only fast-growing project in Pakistan, sustaining without financial assistance from any individual, group, or Govt of Pakistan. This organization was set up with a clear vision and defined goals to fight thalassemia as National Cause. Besides, its primary role of dealing with treatment, JSF is fully committed to deal with the core issue of awareness and prevention of disease at the National level with the help of all stakeholders to protect our forthcoming generations in Pakistan.
Unfortunately, no worthwhile steps have been taken at national level to deal with the problem except sharing of statistics about annual growth of thalassemics in our populaaon. We are lacking in sharing the problem at national level and seeking the technical assistance from international organizations like Thalassemia International Federation or WHO to evolve a comprehensive strategy to deal with this dreadful genetic disorder. Therefore, we must evolve a comprehensive National policy to suggest the Govt and other stake holders about the means and ways to deal with the problem.
Most impotently, we need to have a pladorm at federal level to channelize the dedicated efforts of private and public sector and coordinate at national level with the support of international technical agencies. Although, all the four provinces of Punjab, KP, Sind and Balochistan have already passed the laws / resolutions for extreme preventive measures like compulsory blood screening before marriage but hardly any success have been achieved.
We can revamp and streamline the role and scope of existing infrastructure to deal with thalassemia more effectively and achieve the desired goals. The tactical or operational role can be assigned to the Thalassemia Federation of Pakistan to adopt a more pragmatic approach regarding treatment and prevention of disease along with the effective role of umbrella organization for those institutes directly dealing with thalassemia both in public & private sector. However, Safe Blood Transfusion Programme (SBTP) may deal with issues on the strategic level i.e. evolving comprehensive Manorial Vision/ Policy and Strategic Framework after seeking/ coordinating technical assistance from TIF, WHO, and Govt. Therefore, I would recommend that Prof, Dr. Hassan Abbbas Zaheer National Coordinator (SBTP) to recapitulate his previous efforts by inviting all stakeholders at national and international level to build consensus to formulate a comprehensive strategy.
I would also recommend that meanwhile Govt can at least sensitive the people through massive media campaign in the form of public service messaging & awareness before the coordinated efforts by TFP and SBTP could be fully matured. As it was promised by Federal Minister for Information & Broadcast, Ms, Marreyam Aurangzeb to take a lead role during her visit in “International Thalassemia Day” programme on 8th May 2017.