Symposium organised in Muscat to raise awareness on Sickle Cell Disease

Muscat: To raise awareness on Sickle Cell Disease (SCD) and reveal key findings from the Sickle Cell Health Awareness, Perspectives, and Experiences (SHAPE) survey conducted in several countries, including those in the GCC, a media roundtable was organised in Muscat on Thursday by Pfizer.

Attended by leading healthcare professionals, the roundtable was designed to share valuable insights on patient experiences, psychosocial burdens, and the impact of SCD on the quality of life of patients and caregivers.

SCD is an inherited disorder that adversely impacts the physical and emotional well-being of patients and caregivers. People with SCD have what are called atypical hemoglobin molecules - proteins that carry oxygen in red blood cells - which can cause the shape of red blood cells to be distorted . These distorted red blood cells can then clump in blood vessels and prematurely break down, causing anemia, fatigue, swelling, and severe pain enduring for days or weeks.

In a systematic review, SCD was found to be a significant public health concern in the GCC countries. with prevalence rates ranging from 0.24% to 5.8%.

A quantitative SHAPE survey was conducted among SCD patients, caregivers, and healthcare providers from 10 countries including the GCC, contributing to the mounting real-world evidence of the tremendous burden of SCD.

Improving patient access to care, strengthening the patient–HCP relationship, and enhancing patient, caregiver, and HCP knowledge are shared responsibilities among all those whose lives are impacted by SCD and those with the means to drive change.

Among SHAPE’s key findings, fatigue, bone aches, and vaso-occlusive crisis (VOC) pain emerged as prevalent symptoms significantly impacting the quality of life for both SCD patients and caregivers.

The survey also highlighted SCD’s profound effect on daily activities, with patients and caregivers reporting an average of 3.9 missed school or work days per month.

Dr. Salam Al Kindi, Professor and Consultant Hematologist at Sultan Qaboos University Hospital, Oman said: “Recent advancements in SCD research and clinical practices including innovative treatment approaches and ongoing initiatives aimed at improving patient outcomes and quality of life, underscore the nation’s commitment to tackling sickle cell disease.”

Zakareya Al Khadem, Founder and Chairman of Bahrain Sickle Cell Society, said: “The findings of the SHAPE survey provide invaluable insights into the lived experiences of individuals grappling with SCD and their caregivers. By amplifying the voices of the SCD community, we aim to drive greater awareness, understanding, and action to address the unmet needs and disparities faced by those affected by this condition.”

Dr. Jaafar Al Touq, Genetic Hematology Consultant at Hereditary Blood Disorder Centre, Bahrain Ministry of Health, said: “In recognising the pivotal role of genetic hematology in the diagnosis and management of SCD, we aim to address inequities and enhance access to care for patients in Bahrain. Through collaboration with patient advocacy group leaders, we endeavor to raise awareness, advocate for improved quality of care, and provide support to those affected by sickle cell disease.”

Dr. Nadine Tarcha, Pfizer’s Gulf Medical Director, said: “At Pfizer, we believe people living with a rare disease such as SCD, along with the untold number of family members and caregivers who support them, deserve more. For more than 30 years, we have worked hand in hand with the rare disease communities around the world to forge a pathway toward life-changing innovations. Today, at Pfizer Gulf, we continue to work in close collaboration with a diverse range of key stakeholders to build a collective body of patient-informed awareness, expertise and shared resources that can help meet the spectrum of community needs along the sickle cell disease journey.”