Biba Tinga

_“My son Ismaël was seven months old when he had his first sickle cell disease crisis. At the hospital in Niamey, Niger, where we’re from, his diagnosis was treated like a death sentence. This was 1988 and, at that time, there were virtually no treatment options for sickle cell disease in Sub-Saharan Africa. They said we should consider ourselves lucky if Ismaël made it to five years old.

It was devastating. Here’s this baby we were hoping we would raise and give a long and good life to, and then to be told not only that he would always be in painful crisis but that any one of those crises could take him away from us. It did terrible things to me as a mother. We went on like that for years, trying to manage Ismaël’s crises with the limited resources we had, focusing always on his happiness and quality of life in the short time he was likely to get. We also witnessed firsthand the countless challenges and barriers that stand in the way of access to proper care. The constant struggle to find blood for transfusions was particularly stressful for me.

When we moved to Canada in 2004, Ismaël was about to turn 15 years old, having already outlived all expectations. Every year was a miracle to us, but he was still in pain and constant crisis. Honestly, I wasn’t expecting his care to be any better in Canada than it had been in Niger because, at that point, I’d lost hope. But three big things happened after we arrived. First, the doctors here were so much better at managing the pain, which immediately changed his life. Second, they put him on a regular transfusion program that completely overcame his growth delay. He grew three years’ worth in one year and had fewer crises. Finally, they gave us a ray of hope that new treatment options could help Ismaël live a longer and happier life than we’d ever imagined.

“In the beginning, my ‘why’ was all about Ismaël. But my desire to protect and support my child quickly grew into an urgent need to protect and support all families, so that none needed to endure the same struggles we’d faced.”

Even as we were celebrating these incredible victories in Ismaël’s treatment, however, it soon became apparent that not every sickle cell patient in Canada was able to access the same level of care. After all, sickle cell affects mostly racialized people: people from the Caribbean, Africa, the Middle East, Southeast Asia, and South and Central America. The barriers these individuals face in accessing care are multiple, structural, and systemic.

In the beginning, my “why” was all about Ismaël. But my desire to protect and support my child quickly grew into an urgent need to protect and support all families, so that none needed to endure the same struggles we’d faced. It drove me to advocate for better blood banking practices, to push for comprehensive care centres, and to establish the first national Canadian Sickle Cell Registry, which was a crucial step in making the invisible visible. As new and more costly treatment options like gene therapy are developed and approved, the need for equity of access becomes even more apparent.

Today, Ismaël is 36 years old and he’s managing his condition well. He’s independent, he has a job, and he lives his own life, but he still has pain and challenges from his condition. I’m less involved in his daily care now that he’s his own caregiver, but I’m still something of a consultant to him, because he still faces many of the same issues that are so common in the sickle cell community. For me, I get my strength through seeing how powerful and courageous Ismaël has become. He inspires me to use that strength to continue fighting and advocating for a world where everyone has access to the care and resources they need.

Truthfully, I never really thought of myself as an advocate before we came to Canada. I was just a mom. A very concerned, very stressed, and very motivated mom. To this day, I’ve never actively sought any position I’ve held in the sickle cell community. I’ve simply been the one who spoke up when something needed to be said. As long as people keep needing my help, I’ll keep raising my voice.”

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