Marking International Thalassemia Day, Bristol Myers Squibb, a global pharmaceutical company, has joined hands with the Thalassemia International Federation and several UAE entities to raise awareness about the disease.
The entities are UAE Genetic Diseases Association (UAEGDA), Sheikh Zayed Centre for Genetic Research, and the Emirates Thalassemia Society. The event aimed to support the patient community and empower the society with the prevention tools, under the theme, ‘Be Aware. Share. Care.’
The International Thalassemia Day on May 8, organised by the Thalassemia International Federation (TIF), encourages the global community to work together to improve knowledge and care around the disease that impacts over 80 million people worldwide.
Inherited disorder
An inherited blood disorder, thalassemia is characterised by the production of an abnormal form of haemoglobin, the protein within red blood cells that the body needs to carry oxygen. The disorder leads to anaemia and other conditions, such as bone abnormalities and growth deficiencies.
Patients living with thalassemia are often required to receive lifelong red blood cell transfusions and a therapeutic programme to support average growth and development, maintain quality of life and increase life expectancy. A small percentage of patients may recover entirely with an allogeneic bone marrow transplant.
To strengthen awareness of the condition and to support the thalassemia warriors, Bristol Myers Squibb has also partnered with several content creators across the region, including the first Emirati figure skater and content creator, Zahra Lari, to raise awareness of the condition and celebrate thalassemia warriors. In Egypt, the company partnered with movie and TV star and Honorary Ambassador for the United Nations Population Fund (UNFPA), Amina Khalil, who shared a video with her Instagram followers to raise awareness about the condition. And in Saudi Arabia, the company collaborated with UNDP Goodwill Ambassador and content creator Muna Abu Sulayman who shared important thalassemia information with her Instagram followers.
Worldwide challenge
Thalassemia is a worldwide challenge and is prevalent in the Middle East and North Africa region. Highlighting the UAE’s efforts and success stories in addressing it, Dr Maryam Mattar, Founder and Chairwoman of the Emirates Genetic Diseases Association, said: “With the support of the UAE’s government, the partnership of government authorities and the active participation of community members from more than 200 nationalities in programs to empower the community with tools for early detection, treatment, and prevention, we reduced the prevalence of thalassemia patients from one new birth a week in 2004 to one new birth every two years in 2016.
“The programmes began in 1998 with a mandatory examination for thalassemia before securing the financial grant for marriage from the Marriage Grant for Citizens. I had the honour of volunteering for the National Campaign to reduce thalassemia in 2001 in cooperation with the authorities to pass the pre-marriage examination law. The Sheikh Zayed Center for Genetic Research conducted the first field survey to examine genetic blood diseases in the country for 11,282 Emiratis aged 18-28 years in 2007. We documented the reality of carriers of the beta-thalassemia mutation, with their percentage at 2.9%. To drive prevention, a compulsory premarital examination was approved in 2007, accredited centers for early detection during pregnancy and umbilical cord blood storage centers were established, and more than five UAE citizens have fully recovered through marrow transplantation with stem cells extracted from the umbilical cord.”
Abdul Basit Merdas, Vice Chairman of the Board of Directors of the Emirates Thalassemia Society, said: "We are proud to partner with Bristol Myers Squibb on International Thalassemia Day. Through this partnership, we will work together towards our shared goal of raising awareness and improving the quality of thalassemia patients’ lives. Through our joint efforts, we can amplify our efforts to provide better care and support to those affected by this condition and, ultimately, positively impact the lives of individuals and families affected by thalassemia."
Care gap
Dr Androulla Eleftheriou, Thalassemia International Federation (TIF) Executive Director, said: “As we mark International Thalassemia Day, it is crucial that we recognise the urgent need to bridge the thalassemia care gap through education and awareness. We have chosen ‘Be Aware. Share. Care: Strengthening Education to Bridge the Thalassemia Care Gap’ to be this year’s theme for the international day. With a prevalence rate of 1 in 12 individuals carrying the thalassemia gene in the Middle East, this condition poses a significant public health challenge for the region. However, through targeted awareness initiatives such as this, we can improve early detection and timely intervention, ultimately saving lives and reducing the burden of thalassemia on families and healthcare systems. In the Mena, we are delighted to partner with Bristol Myers Squibb to launch a series of awareness activities across the UAE, Saudi Arabia, and Egypt. Together, we are committed to improving the lives of individuals and families affected by thalassemia through advocacy, education, and access to quality healthcare.”
Oscar Delgado, General Manager - Middle East & Africa, Bristol Myers Squibb, said: “We are committed to support the needs of patients with thalassemia in the region and their families. This International Thalassemia Day, we want to further highlight the immense burden that the condition places on individuals, families, and healthcare systems in the Middle East. We will continue to help close the thalassemia care gap through strategic partnerships and initiatives that improve access to quality care and drive awareness about the condition. By working together, we can empower healthcare professionals, families, and individuals with the knowledge and resources they need to manage thalassemia effectively.”
The UAE government has made great efforts to increase screenings, and access and raise awareness around the need to identify the thalassemia carrier population and enhance disease care. The UAE launched a nationwide campaign to promote premarital screening, and since 2007, it has been made compulsory for all couples planning to get married. The disease continues to burden patients, healthcare services, and society significantly, highlighting the ongoing need for continued public awareness, prevention programmes, and enhanced access to innovative care.-- TradeArabia News Service
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