Riyad Elbard has been receiving monthly blood transfusions since he was diagnosed with beta-thalassemia at the age of one. Because of the condition, his body doesn’t produce enough hemoglobin to carry oxygen to his organs and tissues. Few treatment options exist for beta-thalassemia, so for patients like Elbard, a safe, adequate supply of blood is a matter of life and death.
But globally, safe blood supplies are under threat. Fewer people are registering as blood donors today than a decade ago, and many countries still lack specific legislation covering the safety and quality of blood transfusions. Elbard hopes to raise awareness of this issue on this year’s World Thalassemia Day (May 8).
“We’re very fortunate in Canada to have access to advancements in blood testing technologies and have a strong donor base,” Elbard said. “But in Eastern Europe, the Middle East, Africa and Asia, the testing technology and supply is not there.”
If fewer and fewer people sign up to be blood donors, it could become very dangerous for beta-thalassemia patients.
Growing up in Beirut during the Lebanese Civil War, Elbard has experienced the anxiety of blood shortages firsthand. At several times during the conflict, his family would have to ask friends and family to donate blood to ensure that he had enough to stay healthy.
The need for blood and blood products is increasing each year, according to thee World Health Organization. At the same time, nearly 30 percent fewer people became blood donors worldwide in 2015 than a decade earlier, according to one survey.
“If fewer and fewer people sign up to be blood donors, it could become very dangerous for beta-thalassemia patients,” Elbard said. “We have to educate younger generations on the importance of blood donation. Employers can make it easier for employees to donate by holding blood drives at work and giving time off to give blood.”
IN 2005, BETA-THALASSEMIA PATIENT RIYAD ELBARD VISITED BEIRUT WHERE HE GREW UP DURING THE LEBANESE CIVIL WAR AND EXPERIENCED THE ANXIETY OF BLOOD SHORTAGES FIRSTHAND.
In 1981, Elbard and his family moved to Canada, and today he receives his transfusions at the University Health Network in Toronto. Every four weeks, he arrives at the clinic at 10 a.m. for cross-matching to find donor blood that is compatible with his. By noon, his blood is usually ready. For the next five hours, Elbard chats with other patients, watches movies or does some work while he receives multiple units of blood through an intravenous line.
Every blood transfusion that he receives increases his risk of acquiring a bloodborne infection. Elbard trusts the blood he receives from the Canadian Blood Services is properly screened and tested today, but that hasn’t always been the case in the country.
In the 1980s, thousands of Canadians were infected with HIV and Hepatitis C from tainted blood products. Although available, blood testing wasn’t government mandated at that time. The resulting scandal led to the overhaul of the Canadian blood system.
“Fortunately, I did not receive any tainted blood, so I don’t have hepatic C or any other viral infection,” Elbard said. “But I thought that was an issue that we needed to advocate for, so I got involved with the restructuring of the Canadian blood system.”
Today, Elbard continues to advocate for blood safety as infectious pathogens such as the Zika virus continue to emerge and threaten blood supplies. He has become a board member of the Thalassemia Foundation of Canada and the Thalassaemia International Federation. He’s also argued that blood should be included on the World Health Organization’s Essential Medicines List at 2013 Global Forum for Blood Safety.
In other countries, blood transfusions remain a gamble for beta-thalassemia patients. Overall 65 percent of countries have legislation covering the safety and quality of blood transfusions.
BETA-THALASSEMIA PATIENT RIYAD ELBARD LIVES IN TORONTO AND TRUSTS THAT THE MONTHLY TRANSFUSIONS THAT HE RECEIVES HAS BEEN PROPERLY SCREENED AND TESTED BY CANADIAN BLOOD SERVICES.
“Countries need to develop national blood systems that function well and develop policies on blood safety and screening,” Elbard said. “It’s also important to manage shortages in critical situations and anticipate any low blood inventories, including contingency plans.”
But it’s not just governments that can take action. Individuals can help beta-thalassemia patients by committing to give more blood, more regularly. On this year’s World Thalassemia Day (May 8), Elbard hopes that sharing his story will help inspire people to do just that.
To learn more about why new treatments are needed to reduce the need for transfusions, read “Beta-Thalassemia: Current Treatments Not Enough.”