Hon. Mohamed-Iqbal Ravalia: Honourable senators, I rise today in support of Bill S-280, An Act respecting a national framework on sickle cell disease. I applaud our colleague Senator Mégie for her extensive consultation with physician specialists and the presidents of the Canadian and Quebec sickle cell disease associations, as well as patient advocates, in helping to develop this bill. I would also like to recognize our colleague Senator Jane Cordy, who championed the designation of June 19 as National Sickle Cell Awareness Day in 2017.

As Senator Mégie has clearly outlined, this bill aims to bridge the current gaps in sickle cell disease knowledge, diagnosis and management. It aims to raise awareness amongst health care providers, improve research and facilitate evidence-based knowledge exchanges through a national registry. It will also help address the existing disparities, and ensure equal access to universal newborn screening and diagnosis.

In Canada, an estimated 6,000 Canadians live with sickle cell disease, and approximately 1 in 2,500 newborns will have the disease.

Sickle cell disease is a hereditary blood disorder characterized by abnormal hemoglobin — the protein responsible for carrying oxygen in red blood cells. The condition primarily affects individuals of African, Mediterranean, Middle Eastern and Indian descent. These deformed red blood cells can block blood vessels, leading to a reduction in oxygen supply to the tissues — the so-called vaso-occlusive crisis.

Individuals living with sickle cell disease frequently experience these crises, characterized by severe pain due to blocked blood vessels. These episodes can occur anywhere in the body, and often necessitate hospitalization for pain management and hydration.

The destruction of sickle cells can lead to chronic anemia, causing fatigue, weakness and pallor. It can also increase susceptibility to infections.

Prolonged vaso-occlusion can result in damage to other organs, often affecting the liver, kidneys, lungs and bony skeleton. Over time, this leads to chronic organ dysfunction.

Sadly, sickle cell disease also increases the risk of stroke, particularly in children. The abnormal blood flow causes sickle cells to clog up arteries, leading to brain damage and neurological deficits.

Honourable senators, in my own experience during my training as a physician in Southern Africa, I witnessed the tragic consequences of this disease and its devastating impact on the quality of life of those affected.

Many countries have implemented newborn screening programs to identify infants with sickle cell disease early, allowing for prompt intervention and management. With our changing demographics, it is imperative that we standardize these screening programs across the country to target at-risk populations.

Addressing pain is a crucial aspect of the management of sickle cell disease. Pain-relief strategies may include medications, physical therapy and psychological support. However, individuals with the disease are often labelled “drug seeking” and denied appropriate medications for pain relief, particularly in settings where there is a poor understanding of the disease and its devastating sequelae.

Despite advances in the understanding and management of the disease, challenges persist. As Senator Mégie outlined, access to comprehensive care, including specialized clinics and medications, remains elusive in many parts of our country.

Sadly, the spectre of anti-Black racism rears its ugly head in the overall response to individuals living with sickle cell disease. These unaddressed issues of racism within the health care system against individuals who are susceptible to the disease create additional barriers to care for those who need it most.

The lack of funding for research in Canada puts us at a significant disadvantage and needs to be addressed by the funding agencies and federal government. There holds strong promise for curative potential using gene therapy and gene-editing techniques, a transformative development that is now available in the United Kingdom.

Colleagues, sickle cell disease is a complex genetic disorder with a wide-ranging impact on the health and well-being of affected individuals. Ongoing research, improved diagnostics and enhanced access to specialized care are essential in mitigating the complications associated with it.

As we move forward, a multi-faceted approach involving medical, genetic and social interventions is crucial to improve the quality of life for those living with this challenging condition.

Honourable senators, this is an important bill and should be referred to committee for further study and consideration.

I thank you. Meegwetch.

(On motion of Senator Martin, debate adjourned.)