Hon. Amina Gerba: Honourable senators, I rise today to wholeheartedly support Bill S-201, which seeks to establish a national framework on sickle cell disease. As you know, I’m not a doctor, but I’ve seen the suffering, the silence and the injustice first-hand.

I thank Senator Mégie for her leadership and her long-standing commitment to champion this important topic. She has shed light on a reality that is far too often ignored. As she mentioned in her brilliant speech at second reading, this disease mainly affects racialized communities, such as Canadians of African, Caribbean, Middle Eastern, South American, Indian or Mediterranean descent. However, it would be wrong to think that people of other origins are immune. In a world where populations mix, relationships between people of different origins are increasingly common. As a result, the gene could very well be transmitted to other groups in our population. We must act now for the future of our all communities.

I first learned about this disease in Cameroon in 1984. My fiancé at the time — now my husband — and I had to get tested before we got married. The test was mandatory in Cameroon. That was when I first heard about sickle cell disease, or sickle cell anemia. Fortunately, neither of us carry the gene. However, I understood what this meant for other couples. They had to choose between love and fear, because if they chose to start a family, they ran the risk of passing an incurable disease on to their child. This disease used to condemn those afflicted to a life expectancy of less than 18 years, plunging families and doctors into a race against time.

I now know people in Quebec who are living with this disease.

Lisa, my hairdresser’s daughter, suffers from a very severe form of the disease. She experiences intense episodes of pain and frequent hospitalizations that have forced her to put her studies on hold. At 35, she has virtually no social life and lives in the shadow of her illness. She is filled with self-doubt and lives in fear. The most difficult thing for her family is the cost of medical care. Medication and hospitalizations place a significant financial strain on them, further increasing the burden of her care.

Mario decided to fight. He is diligently getting his treatments. He studied at the best schools, is married and has two children. He adapted his life and transformed his pain into strength, into empathy.

Then we have Mamoudou Camara, director of the docufiction Silent Suffering, which I highly recommend. He takes us behind the scenes and shows us his parents’ powerlessness in the face of their child’s pain and the anxiety hanging over his head like a cloud.

Honourable senators, this bill is essential and contains measures that could directly support those who have the disease. As Senator Mégie explained, it would help to better inform health care professionals, create a registry and a national research network, offer universal newborn screening, promote blood donations and build up a supply of all blood types. It would help raise public awareness of this terrible disease.

It is not right that, still today, patients who arrive in crisis at our hospitals’ emergency rooms are met with skepticism, judged and neglected. That is unacceptable in 2025 in Canada.

Dear colleagues, sickle cell disease is not rare. It’s just invisible because it affects minority communities. By voting for Bill S-201, we will send a clear message that every life matters regardless of skin colour and regardless of origin.

By voting for Bill S-201, we are sending a clear message that every life matters, regardless of a person’s skin colour or where they are from.

Honourable senators, we represent minorities as well as our regions and communities. We must lend support to issues that affect all of the communities in our society. Every life matters.

Bill S-201 must be sent back to committee for review quickly.

Thank you on behalf of Lisa, Mario, Mamoudou and all those who suffer in silence.