Thalassemia: Genetic Blood Disorder Expected To Double In Next Few Decades

Children’s Hospital Oakland, a world recognized center for treatment and research of thalassemia, has formed an international network treating patients throughout the world. Thalassemia is the world’s most common genetic blood disorder and it is rapidly increasing. Seven percent of the world’s population are carriers, and 400,000 affected babies are born each year. The World Health Organization (WHO) predicts a doubling of these statistics within the next few decades. Once rare in California, it has become the most frequent disorder detected in the state newborn screening program of over 700,000 annual births. Thalassemia is usually fatal in infancy unless ongoing transfusions are initiated.

Children’s Hospital Oakland is orchestrating an international effort to step up education, awareness, and specialized treatment for patients. One of India’s top researchers is visiting the hospital to share her insight on this rapidly increasing genetic disease. In India, 100 million people are carriers of this disorder, and at least 10-thousand babies are born every year with thalassemia. There is a shortage of adequate treatment, including transfusions for many of these patients. Similar problems are being observed throughout the world, including California and the Bay Area.The rapid increase is largely due to our changing demographics. While all populations are at risk for thalassemia, it is most common in the South Asian community, particularly the Asian Indian community — one of the fastest growing populations in the Bay Area. In Alameda County, the South Asian population has increased by an average of 82% in the last decade. The Asian Indian population has increased by 125%. Similar to sickle cell disease, if both parents carry the trait for thalassemia, there is a 25 percent chance with each pregnancy that their child will be born with the disease. Treatment is complex and costly.Joint efforts have been established with Indian scientists to address thalassemia, both in California as well as in India. Dr. Sujata Sinha is leading the effort in India to improve education and treatment for the disease. Dr. Sinha plans to use the collaboration with Children’s Hospital Oakland and her center as a model to improve care in India.(Source: Children’s Hospital & Research Center at Oakland: June 2005.)