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September 1, 2011

Dr. Isaac Odame Leads Global Sickle Cell Disease Network

Dr. Isaac Odame knows sickle cell disease (SCD). He’s studied the genetic blood disorder for years. He was instrumental in creating Ontario’s newborn screening program, implemented in 2006. He’s seen the devastating impact it has on vulnerable children in the developing world, where it accounts for the deaths of up to 16 per cent of all African children under the age of five. He also knows that there are solutions at hand.

“Sickle cell disease is a huge public health problem but the solutions are simple,” says Odame, an academic clinician in The Hospital for Sick Children’s Division of Haematology/Oncology. “We need leadership, co-ordination and research.”
As a result of Odame’s push for a co-ordinated fight against sickle cell disease, in January 2009, 80 experts from 25 countries gathered in Benin to form the Global Sickle Cell Disease Network (GSCDN).

“We knew if we didn’t collaborate to take action immediately, the pace of development for treatment and education would be too slow in the countries that needed it most,” says Odame, who was named the network’s Medical Director. “Children would be dying needlessly.”

Odame and his many international collaborators – all leaders in the field of blood diseases, public health and sickle cell disease – have spent the last two and a half years planning, strategizing and networking with health experts, academic societies, donor and funding agencies. An early decision to use the web to facilitate communication means information is disseminated quickly and broadly. In 2010, a ning site was set up to facilitate interaction between global partnerships and now has 130 members.

Now, he says, it is time for the network to deliver. Thanks to support from the Department of Paediatrics, SickKids International, and SickKids Foundation, Odame, who has been volunteering as the GSCDN Medical Director in addition to his full-time clinical job, will  have protected time to lead the GSCDN implementation plan with dedicated support staff effective September 1.

With limited resources, it isn’t possible for the GSCDN to go to every impacted country. Instead, the goal is to establish two hubs, one in west Africa and one in east Africa where experts from the richer parts of the world, partnering with their counterparts in low-income countries, can go to work and teach trainees from the neighbouring countries of the African regional hubs.

Odame thinks the hubs will have multiple benefits. Concentrating resources will create a stronger impact in a greater area. They will be centralized locations for collaboration and partnerships. Trainees can be taught in their own environments and learn appropriate methods with readily available technologies.
Other plans include pilot studies, industry partnerships, creating best practices protocols and manuals and continued expansion of the network membership. Odame points out that one of the difficulties in combating sickle cell disease is that it is a problem that primarily resides in developing nations, the same areas that lack both health-care infrastructure and research capability.

“Developed nations have the technology and the capacity to fight the disease, but far fewer patients,” he says. “This is about accelerating the pace to bring ready, simple solutions to the world.”

How the GSCDN plans to save lives:

Improve public awareness
“People need to know about a disease to fight it,” says Odame. “Sickle cell disease has a very low public profile. As awareness is heightened, people can pressure their governments to implement necessary public health policies.”

Remove stigma
“If you are a single allele carrier, sickle cell disease is actually beneficial. It protects against malaria. We need people to understand there is no fault involved and that, for many, this is a mutation that kept them alive.”

Implement newborn screening
“Early identification of sickle cell disease means parents can be educated to take appropriate and life-saving prophylactic measures.”

Immunizations and anti-microbial prophylaxis
“Children with sickle cell disease are vulnerable to infectious disease. Immunizations and antibiotic prophylaxis will help them fight infection.”

Introduce hydroxyurea drug therapy
“Hydroxyurea is the only drug therapy we currently know. One pill a day, and they can be manufactured at a very large scale, very cheaply.”

Research genetic modifiers
“To eradicate a disease, we need to understand it. Working in developing nations means we have access to a large number of patients in their natural environments, where the disease began.”