TORONTO, May 25 /CNW/ - 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
"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."
Call for Immediate Action
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
For further information:
For further information: Angela Covato, Anemia Institute for Research &
Education, Cell: (416) 994-0077, Office: (416) 969-7431