Sickle Cell Disease (SCD) is an inherited disorder that affects the physical and emotional well-being of patients and caregivers. People with SCD have atypical hemoglobin molecules, causing distorted red blood cells that can lead to severe pain, anemia, and other symptoms. In the GCC countries, SCD is a significant public health concern with prevalence rates ranging from 0.24% to 5.8%. To raise awareness about SCD and share key findings from the Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey, a media roundtable was organized by Pfizer in Muscat. The roundtable aimed to provide insights on patient experiences, psychosocial burdens, and the impact of SCD on the quality of life of patients and caregivers.
The SHAPE survey collected data from SCD patients, caregivers, and healthcare providers from 10 different countries, including those in the GCC. The survey revealed that fatigue, bone aches, and vaso-occlusive crisis (VOC) pain are prevalent symptoms that significantly impact the quality of life for both SCD patients and caregivers. Patients and caregivers reported an average of 3.9 missed school or work days per month due to the effects of SCD on daily activities. These findings highlight the need for improved patient access to care, strengthened patient-HCP relationships, and enhanced knowledge among all parties involved in caring for those affected by SCD.
Recent advancements in SCD research and clinical practices, including innovative treatment approaches, are contributing to improved patient outcomes and quality of life. Dr. Salam Al Kindi, a Professor and Consultant Hematologist at Sultan Qaboos University Hospital in Oman emphasized the commitment of nations to tackling SCD through initiatives aimed at enhancing patient outcomes. Zakareya Al Khadem, Founder and Chairman of Bahrain Sickle Cell Society, emphasized the importance of amplifying the voices of the SCD community to drive greater awareness, understanding, and action to address the unmet needs faced by those affected by the condition.
Dr. Jaafar Al Touq, a Genetic Hematology Consultant at the Hereditary Blood Disorder Centre in Bahrain, highlighted the role of genetic hematology in the diagnosis and management of SCD. Collaborations with patient advocacy groups aim to raise awareness, advocate for improved quality of care, and provide support to those affected by the disease. Pfizer’s Gulf Medical Director, Dr. Nadine Tarcha, emphasized the importance of supporting those living with rare diseases like SCD, as well as their caregivers. Pfizer has been working with rare disease communities globally to develop innovative solutions to improve patient outcomes and enhance the quality of life for those affected by SCD.
