Hospital refuses admission to young adults with thalassemia and sickle cell disease

Young adults with thalassemia and sickle cell diease have been trying for up to 10 years to gain admission to the only adult hospital program in central and southwestern Toronto specialized to treat their blood disorders. Since 1999, the Toronto General Hospital (TGH) has restricted the inherited blood disorders program to 99 patients requiring blood transfusions. As a result, about 150 young adults with complex disorders receive blood transfusions at the Hospital for Sick Children but no adult services.

"For 18 years, you receive wonderful care. Suddenly you're told there's no room for you in the adult program, so you get transfusions at one place and emergency care somewhere else," said Victoria Ibowu, a 19-year-old living with sickle cell disease who cannot access adult care. "And you know that the only way you'll get into the adult program is when someone there dies."

Thalassemia and sickle cell disease are inherited blood disorders characterized by misshaped red blood cells. As a result, there is a lack of oxygen delivered to tissues and vital organs. Until recently, few people with thalassemia or sickle cell disease survived to adulthood. But thanks to advances in treatment, many are now living into their 50s and beyond. But the program at TGH, once considered among the best in the world, is severely under-resourced. In their 2003 report, the Toronto District Health Council called it "the price of success." They concurred that it was inappropriate for adult patients to be cared for in a children's institution and that the lack of resources posed a serious risk to adult patients. They called for the immediate addition of health human resources to bring the program to an appropriate level of care.

Over the past several years, about 15 young adults with thalassemia or sickle cell disease have died, often of preventable causes. Most had survived a blood supply in the 1980s that was at high risk for contamination with HIV and hepatitis C. They died, not because of contaminated blood, but of something more tragic: the lack of resources for adult care. In 2004, after meetings with the patient community, the provincial government committed to bringing the level of care for adult patients up to the standards for the pediatric program. But little has changed. In the words of one physician, the situation has gone from "a crisis to a catastrophe."

Today, representatives of the Coalition to Save Our Young Adults, including patients and families affected by thalassemia and sickle cell disease, gathered in the Main Legislative Building of Queen's Park to call upon the members of Ontario parliament to fulfill their commitment to ensure quality healthcare for adults with thalassemia and sickle cell.

"We cannot afford to allow this pattern of premature and unnecessary death to continue," said Riyad Elbard, president of the Thalassemia Foundation. "The lack of resources puts all Ontario patients with inherited blood disorders at risk."

The Coalition, which includes the Anemia Institute for Research and Education, Thalassemia Foundation of Canada, Seed of Life, Sickle Cell Association of Ontario, and Camp Jumoke, are calling upon the Toronto General Hospital, the LHINs, and the Ministry of Health to assure appropriate funding and human resources.

Durhane Wong-Rieger, president of the Anemia Institute and Chair of the Coalition, called upon the Ministry of Health and the Toronto General Hospital to respond to this "catastrophe" by ensuring that the approximately 150 adult patients who have been denied access to the program at TGH are transferred as soon as possible from the Hospital for Sick Children to the adult program, with appropriate service provision.

"It is unconscionable that these children, with the support of their parents and healthcare professionals, have managed to survive these very difficult chronic diseases but now find themselves all grown up with nowhere to go."