Honourable senators, I rise today to support Bill S-201, An Act respecting a national framework on sickle cell disease.

My gratitude goes out to Senator Mégie for her untiring efforts and support for those living with sickle cell disease.

Sickle cell disease, or SCD, has long stood out as one of the most devastating inherited blood disorders, affecting millions worldwide, particularly those of African, Middle Eastern and South Asian descent. Characterized by abnormally shaped red blood cells, this disease leads to painful crises, impacting multiple body sites, organ damage and premature death. But today, we stand at the threshold of remarkable transformation in the way in which we understand and treat this disease.

My own experience as a clinician trained in sub-Saharan Africa afforded me the opportunity to witness first-hand the dire consequences and sequelae of this devastating disease.

A lack of awareness of the severe pain brought on by the circulatory compromise because of this disorder often results in individuals living with SCD being labelled as drug seekers malingering in emergency rooms.

We now understand that SCD is caused by a single point mutation in the beta-globin gene. This simple but profound insight has paved the way for revolutionary therapies, particularly in the field of gene therapy. In recent years, we’ve seen the emergence of a curative approach using gene-editing technologies which aim either to correct the genetic defect or increase fetal hemoglobin production — offering functional cures to patients who previously had few options.

The United Kingdom and the United States have instituted this therapy with remarkable success, and while the numbers are small and the cost significant, a new ray of hope has appeared for those living with this devastating condition.

Historically, hydroxyurea was the mainstay of treatment, and, while effective, it is not universally successful. Today, we have new approved medications which target the disease at different points in its pathophysiology, reducing red blood cell destruction, improving blood counts and decreasing the devastatingly painful crisis episodes. These drugs are not cures, but they are critical tools that offer improved quality of life and fewer hospitalizations.

Universal newborn screening in many countries now allows for early identification and management, reducing mortality in children significantly. Coupled with preventive measures like prophylactic penicillin, pneumococcal vaccination and parental education, we are seeing dramatic improvements in childhood survival rates.

Matched sibling donor transplants remain the only established curative treatment, but ongoing research in a broader array of non-sibling donors, alongside advances in reducing rejection, means that more patients may be eligible for curative interventions in the near future.

Despite these advances, access remains deeply inequitable. Most individuals with SCD live in sub-Saharan Africa, where early mortality remains tragically high, as I so often witnessed. Even in high-income countries, systemic disparities in care, underfunding of SCD relative to other genetic diseases and stigma persist. If we are to truly change the course of this disease, we must combine scientific progress with health policy, community engagement and global equity.

Senator Mégie, former senator Jane Cordy and community allies are to be applauded for their advocacy in ensuring that we do not allow SCD to become neglected across the board in our complicated health hierarchy.

In conclusion, colleagues, while sickle cell disease remains a formidable challenge, we are living in an era of hope. Science is catching up to need. With sustained investment, equitable access and continued innovation, we have the tools not just to manage but to cure this disease in our lifetime.

In closing, let me recognize my colleague Senator Mégie, who will be leaving us in the not-too-distant future.

Thank you, Marie-Françoise, for your friendship, support and sage advice. You were my first seatmate when I was appointed to this chamber, and you welcomed me with your warm heart and kind demeanour. We thank you and we will miss you in this place.

Thank you. Meegwetch.