Hon. Amina Gerba: Honourable senators, one of the Senate’s mandates is to defend our country’s minorities. In that sense, we have a duty to ensure the well-being of the most vulnerable.
I rise today to firmly support Bill S-280, An Act respecting a national framework on sickle cell disease. I salute and congratulate Senator Mégie for introducing this crucial bill.
I am not a doctor and definitely not an expert on this terrible hereditary genetic disease, which is transmitted through the parents and affects people from birth.
I’m speaking to this bill because I have known and know people, families and friends living with this disease that our colleague so eloquently described in her speech at second reading.
Senator Mégie explained that sickle cell disease is a genetic condition that affects a significant number of Canadians, especially those who come from Africa, the Caribbean, the Middle East, Central and South America, certain areas of India and the Mediterranean Basin.
However, honourable senators, it would be a mistake to think that those with different origins are safe. We live in a world where populations intermingle and unions of persons of different origins are becoming more and more common. The possibility that the gene could be transferred from one group to another does exist. We must therefore act now for the future of all our people.
Let me tell you a personal story. When my husband and I got engaged in Cameroon in 1984, the civil registrar demanded a screening test for sickle cell disease. The hemoglobin electrophoresis test, as it’s called, showed — thank God — that our results were both negative. I had never heard of that disease before. By confirming that we were both negative, we were allowed to get married with no risk to our future children. I could say that we were lucky.
Imagine two people in love who learn that one or both of them are carriers of that gene. That terrible news means that they have to make a decision with far-reaching consequences: to form a union in full knowledge of all the risks.
Then comes the dilemma: to form a union knowing that they are likely to have children who will carry the gene and have a high probability of developing the disease, or choose not to have children. At the time, in Cameroon, the life expectancy of people suffering from serious forms of sickle cell disease was barely above 20 years, mostly due to the poor state of the country’s health system.
Coming back to the people around me in Quebec, where I live, several people who are close to me have the disease. I will give you just a few examples of the people I have personally known.
I have seen Lisa’s pain attacks and frequent hospitalizations. Lisa is my hairdresser’s daughter. She suffers from the most severe form of the disease and requires frequent medical attention, which affects her and her family’s quality of life.
This obviously impacted her studies, which she never finished. At 35 years of age, she has never been in a romantic relationship. Lisa desperately lacks in self-confidence. She struggles with fear, loneliness and anxiety every single day.
I can also tell you the story of my friend Mario, who, unlike Lisa, is an accomplished professional. Mario decided to fight the disease by tackling it head-on. He understood from an early age that he was not gifted with the health of an athlete, so he has always known that he would attain his dreams through education and intellectual work, even with this disease.
He graduated with high honours from some of the most prestigious universities in the world, despite having had to be hospitalized regularly throughout his life. Married, with one child, Mario is diligent in getting his treatments and has found creative arrangements around his professional and personal life to be able to live as well as possible with this disease. This helped him develop a great sense of empathy towards others.
To summarize, colleagues, despite the difficulties they face, people with sickle cell disease accomplish extraordinary things in life and for our society, even if they sometimes have to hide their medical condition in order to advance in demanding professional environments that leave little room for vulnerability.
What most inspired me to give this speech was the story of Mamadou Camara, the director of a docufiction pilot project entitled “Suffering silence.” We invited Mamadou to the Senate, and Senator Mégie and I organized a screening of his film in the Senate in June. Mamadou suffers in silence. He plunges us into the intimate life of a family to show us the parents’ distress at their powerlessness to relieve their child’s suffering.
It helps us understand the anxiety felt by carriers of the gene and their families. As Mamadou says, he lives with a death sentence, a sword of Damocles dangling over his head.
Colleagues, sickle cell disease has serious implications for family dynamics, affecting the emotional, physical, psychological and financial health of those close to the patient.
This bill is important for several reasons: it will improve awareness among health care professionals, create a national research network, establish a national registry, ensure universal access to neonatal screening, promote public awareness and provide the financial support needed to advance research into this disease.
As Senator Mégie said so well, far too few health care professionals are aware of the disease and its symptoms. As a result, when some sufferers having an attack arrive at emergency rooms, they are often misdiagnosed, which leads to poor management and care, or even an underestimation of the care that is required. In 2023, in Canada, that is not acceptable.
This disease requires a consistent and proactive approach from our government. By establishing a national framework, we can guarantee equitable access to health care and support for patients and their families.
By voting in favour of Bill S-280, we are helping to build an ecosystem that will give every child a fulfilling, stigma-free life and equitable access to health care, regardless of their genetics or background.
Congratulations, Senator Mégie.
Thank you, colleagues.