Promoting Access to Treatment for Patients with Haemoglobin Disorders

For the thalassaemia syndromes the Thalassaemia International Federation, the international patients’ organization has been struggling since its inception in 1987 to facilitate access to treatment for all thalassaemia patients across the globe. Ever since we accepted the doctrine that where strong patient organisation exists, we have observed that there has been a marked improvement in the health care services provided for the haemoglobin disorders worldwide. Unfortunately personality or ego issues and lack or inexperience of strategic planning have always proved to be major drawbacks in achieving collective goals for patients. But the biggest obstacle to access to treatment in the years of my early adulthood has been no other than my self. Having finally secured safe and adequate blood, sample chelating agents and excellent medical professionals, I had decided that I had enough and I stopped chelating. I know now that the access to treatment has as much to do with our determination to live and prosper as with the influence of our countrymen to provide to the less privileged. My disorder provided me with much more than I could ever pray for… Thank God.