Alberta father champions law on sickle cell disease after personal loss

An Alberta father is advocating for legislation that would create national policies for fighting against sickle cell disease after his son died nearly four years ago.

Jacob Marfo, director of Ezra Marfo Cancer Foundation, also hopes the bill heading through parliament will help minorities receive the healthcare they need.

Marfo’s son Ezra died in 2022 of leukemia. At the time, he was looking for a stem cell donor who had to be from a similar background.

“The whole of Canada has only 1,808 black people of African descent on the stem cell registry, and that makes it very difficult to find a match,” Marfo said.

Ezra never found a blood match and died.

Marfo said he saw a lack of regulation and awareness in sickle cell disease and stem cell donation.

“We realized that there are some aspects of the policies, the laws that do not make provisions for everybody to become a blood donor,” Marfo said.

Now, Marfo’s foundation, along with the Sickle Cell Disease Association of Canada and some federal officials, is raising awareness about Bill S-201, a federal framework on sickle cell disease. 

“I don’t want to see another person cry simply because the solution is there, but they were unable to access it because of policy restrictions or where they live,” Marfo said.

The bill will provide training and education for health-care professionals on sickle cell, establish a national registry on the disease, and support the creation of a diverse blood supply that allows for safe transfusions. 

“Normally, if you look at the donor centres, usually there are places in locations where the Black community does not live. They have to travel from a distance to come, that’s one barrier, right?” said Biba Tinga, president, Sickle Cell Disease Association of Canada.

The legislation will also support public awareness of the disease and blood donation. If passed, the community will speak with the provinces for implementation.

Tinga said he was hoping this will provide diverse and consistent support for visible minorities in Canada.

“To make sure that it’s accessible to them,” Tinga said. “Also, put the message where they can hear it.”

Marfo said his son’s situation may have been different if the bill had been implemented when he needed it.

“This bill and all the things, the awareness that we are creating, I believe Ezra will be very happy,” Marfo said.