Hon. Marie-Françoise Mégie: Honourable senators, I rise today to speak in support of Bill C-284. This private member’s initiative is sponsored by our colleague, Senator Ravalia, and I thank him for that. This bill seeks to establish a national strategy for eye care.

The other place unanimously passed this bill on October 25, 2023. Senator Ravalia outlined why this legislation is important for the health of our population. He also warned us that our society will incur significant economic costs if we do not act now.

The Association des optométristes du Québec ran an awareness campaign to warn parents that about one in four school-aged children has vision problems. I really like the association’s tag line about seeing to eye health.

In addition, a 2019 estimate pegged the potential cost of vision loss in Canada at $32.9 billion. Then there’s the not insignificant human impact. In fact, eight million people in Canada are at risk of losing their sight.

According to the Merck manual, macular degeneration is the leading cause of irreversible vision loss among seniors. It is important to keep in mind that deteriorating vision disrupts normal, everyday activities. It hastens the loss of independence and has a negative impact on aging.

Bill C-284 offers a unique opportunity to meet the growing needs of millions of Canadians and positively transform their vision health.

In 2020, Statistics Canada reported that the percentage of the population with self-reported good vision without correction was about 75% among young people of both sexes aged 12 to 19. This percentage was considerably lower among people aged 45 to 49, and was close to 25% among those aged 55 and older.

There is no doubt that as people get older, they have a greater need for eye care professionals. Being able to see well throughout one’s life is the key to maintaining autonomy and overall good health.

The Canadian Ophthalmological Society surveyed Canadians to find out how much they know about major eye diseases. Over half, or about 62%, of Canadians are familiar with cataracts, and yet only a quarter of them know that cataracts are the leading cause of blindness in the country. When it comes to age-related macular degeneration, the proportion drops to 39%, even though this disease is the second leading cause of blindness and affects nearly two million Canadians. As for glaucoma, diabetic retinopathy and dry eye syndrome, the proportion drops to under 26%, sitting at about 22%.

These figures on eye disease awareness clearly demonstrate the need to educate Canadians about eye disease prevention.

Despite how important it is, eye care often lacks the necessary attention and resources. It’s time for Canada to take a proactive approach to vision health, and Bill C-284 is an important first step in that direction.

Bill C-284 proposes to establish a national eye care strategy that would address several fundamental aspects of vision health. First, it would establish regular screening programs to detect eye problems early and prevent serious and costly long-term complications.

The proposed national strategy would promote access to quality eye care for all Canadians, regardless of where they live or their socio-economic status.

All too often, marginalized and disadvantaged populations have limited access to eye health services, which exacerbates health inequalities.

By passing Bill C-284, we would be committed to ensuring that every citizen has access to adequate eye care, thereby contributing to a more just, equitable and inclusive society.

Implementing this national strategy would also stimulate research and innovation in the field of eye health. Investing in research into eye diseases and new technologies would enable us to develop more effective treatments and improve outcomes for patients with visual impairments.

Bill C-284 would also encourage public education and awareness about the importance of eye care and preventive measures to support healthy vision. By informing and educating the public, we can encourage healthy behaviours and reduce the number of people suffering from preventable eye problems.

Honourable colleagues, support for Bill C-284 is a commitment to a better quality of life for millions of Canadians through equitable access to proper eye care. We can send a strong message that eye health is a national priority and that every Canadian deserves to live in a country where their health is taken seriously.

In closing, let us move this bill forward and support the unanimous and non-partisan will to establish a national strategy for eye care in Canada. Let us work together to make a real difference to our fellow citizens’ quality of life and help create a healthier and more promising future for all.

Thank you.

(On motion of Senator Martin, debate adjourned.)

The Senate proceeded to consideration of the fourth report (interim) of the Standing Senate Committee on Energy, the Environment and Natural Resources, entitled Hydrogen: A Viable Option for a Net-Zero Canada in 2050?, presented in the Senate on May 9, 2023.

Hon. Marie-Françoise Mégie: Honourable senators, I have the honour to table a petition from the residents of Ontario, Quebec and Newfoundland and Labrador expressing their support of Bill S-280, An Act respecting a national framework on sickle cell disease.

Hon. Marie-Françoise Mégie: I sincerely thank Senator Burey for agreeing to be the critic for this bill. I am truly happy about that.

Before I answer your question, I would like to ask you one myself.

When health care professionals are taught about the different hemoglobinopathies, including sickle cell disease, is sickle cell disease the only one that’s covered, or are all the other ones included as well?

[English]

Hon. Marie-Françoise Mégie moved second reading of Bill S-280, An Act respecting a national framework on sickle cell disease.

She said: Honourable senators, I rise today to speak to Bill S-280, An Act respecting a national framework on sickle cell disease.

This has already been discussed in Parliament. In 2011, in the other place, MP Kirsty Duncan tabled Bill C-221, meant to implement a comprehensive national strategy for sickle cell disease and thalassemic disorders.

Unfortunately, that bill never made it past first reading. Building on MP Duncan’s commitment, our colleague Senator Cordy introduced Bill S-211 in this chamber, designating June 19 as National Sickle Cell Awareness Day. That bill received Royal Assent in December 2017.

Thank you, Senator Cordy.

[English]

This disease has several names.

[Translation]

In French, it is known as “drépanocytose,” from the Greek word drepanon, meaning “sickle” or “crescent.” In English, the name used is “sickle cell disease” or “sickle cell anemia.” All these diverse terms are commonly used, but for the purposes of my speech, I will use the term “sickle cell disease.”

[English]

What exactly is this disease?

[Translation]

To help you understand it, allow me to make a brief foray into the world of medicine. Don’t worry, I’ll make sure that my remarks don’t wear you down too much at this late hour.

This disease has been around since time immemorial. It was described for the first time in medical literature in 1910 by American doctor James Herrick, and its genetic basis was established in 1949 by James Neel.

[English]

It is: enetic, rare, chronic and multisystemic. It affects the quality of life, and it decreases life expectancy. It’s a death sentence.

[Translation]

It is a hereditary disease. It can’t be caught like a cold. It is passed down by the parents when the child inherits genes from both parents. Roughly 5% of the world’s population carries the gene, also called a trait. In some parts of the world, that percentage rises to 25% or more.

With respect to prevalence, the disease affects roughly 6,000 Canadians. Dr. Yves Giguère, director of Quebec’s newborn screening program, says it is a rare disease, occurring in one in every 2,000 births in Quebec.

Sickle cell disease is prevalent among persons with ancestors from Africa, the Caribbean, the Middle East, Central and South America, some regions of India and the Mediterranean. According to a study published in 2023 by Jacob Pendergrast and his colleagues at the Toronto General Hospital Research Institute, “The estimated prevalence of patients with sickle cell disease in Ontario [between 2007 and] 2016/17 was 1 in 4200,” and affected patients’ need for hospital-based care is substantial.

This is a chronic and multisystemic disease: It is present at birth, it lasts a lifetime and it affects every organ in the body.

Sickle cell disease is a genetic disorder that affects hemoglobin, the protein in red blood cells that transports oxygen. Abnormal hemoglobin results in abnormally shaped red blood cells. Red blood cells are usually disc-shaped and flexible, but in people with sickle cell disease they become crescent- or sickle-shaped, thus the name of the disease. These sickle-shaped red blood cells are rigid and can block small blood vessels, a condition known as vaso-occlusion. Normal red blood cells can live up to 120 days, but sickle cells live only for about 20 days, which can cause severe anemia. Every organ in the body can be affected because they all require adequate blood flow. They are not getting the oxygen they need, which is what causes the various symptoms and complications that I am going to tell you about.

The most common clinical symptoms of sickle cell disease are vaso-occlusive crises, which can cause medium-intensity to intolerable chest, bone and joint pain that often requires frequent hospitalization. The person affected can also get infections that can lead to sepsis or death, if they are not treated immediately. That is all I will say about that.

One of the most common complications of sickle cell disease is stroke. One in ten sickle cell disease patients under the age of 20 have a stroke. They also suffer from pulmonary hypertension, which means that they need daily oxygen for the rest of their lives. Another complication is kidney failure, which means the patient will need dialysis and so on.

In terms of reducing life expectancy, the treatment of sickle cell disease has evolved over the years, and life expectancy has improved. In the 1970s, life expectancy was estimated at five to 10 years. These days, many patients who receive appropriate treatment can live into their sixties, which is still markedly shorter than the general population.

This is just an estimate because we don’t have the evidence.

Ismaël, a 35-year-old man who expects to live to about 50, said, “I have already lived half my life, if nothing changes.”

[English]

Why talk about sickle cell disease today? It’s unknown, underdiagnosed, lacks research funding and causes premature death.

[Translation]

According to the Sickle Cell Disease Association of Canada, this disease is the most common of all genetic diseases. Nonetheless, it remains relatively unknown to the public and even to health care professionals. Only the health care teams at specialized centres in Canada’s major cities have professionals who are familiar with the disease and can provide adequate care to patients. This lack of knowledge has many consequences, including the name of the disease. Some francophone families who only know the disease by the French name “drépanocytose” have had a hard time making themselves understood in English-speaking hospital environments.

Even when families use the correct terms, care providers do not always give them the attention they need, blaming everything on parental anxiety. Ignorance of the disease’s manifestations also leads to limited access to appropriate care.

As soon as their children develop a fever, parents are instructed to take them to hospital immediately, as they are at risk of developing life-threatening sepsis. However, it’s not easy to make this clear to the professionals who receive them in the emergency room. Excruciating chest, bone and joint pain cannot always be alleviated by regular painkillers, so the use of narcotics may be required. These adolescents are often labelled as “drug addicts” in the emergency room, and pain treatment is then delayed, with the risk of serious complications. For many of our suffering young patients, inadequate care and stigma is their lot in life.

Along with the physical symptoms, their mental wellness is considerably compromised. Repeated hospitalizations and difficulty holding down steady employment take a heavy toll on patients’ self-esteem. Parents are forced to stand by, powerless, as their child experiences angry outbursts and sadness that can morph into depression.

The emotional challenges lead patients like Mamadou to wonder why they are not normal and why they are always in bed, why their legs and arms hurt so much, why they spend 18 hours a day crying on and off, why they wake up every morning feeling like there is a cloud hanging over their heads and not knowing what is going to happen to them today or tomorrow.

Ismaël says, “It’s hard to plan long term because my life has an all-but-definite expiration date.”

Then, a parent speaking from his own experience testified about the devastating effects this disease can have on daily life and family well-being. He said the following:

The hospital has become our second home, which hinders our ability to plan our work schedule, our vacations, in short, to enjoy a certain quality of life.

Some families have to choose a different career path in order to live near centres where health care professionals know the disease.

I will now talk about the lack of research funding.

The Interdisciplinary Centre for Black Health in Ottawa is studying the mental health of patients and their families. Applications for research grants from hemato-oncologists and other specialists in the field keep being turned down by funding agencies. Although sickle cell disease was the first genetic disorder to be identified, advances in treatment have been slow to follow. This is largely due to a lack of research funding.

Many specialists compare sickle cell disease and its associated challenges to other genetic disorders, particularly cystic fibrosis. These two disease have some similarities. They are both rare, chronic, multisystemic disorders that reduce life expectancy. However, there are major differences between the two when it comes to the funding allocated for research, a registry and therapeutic advances.

The Cystic Fibrosis Canada website shows that scientists receive many research grants, some valued at up to $100,000 a year. However, the Sickle Cell Disease Association of Canada website shows that only two small grants are available: two individual grants in the amount of $20,000 per year for up to two years, and two additional grants in the amount of up to $5,000 each, also for two years.

When will a research chair be created for sickle cell disease in Canada?

This lack of knowledge about the disease also delayed the development of a diagnosis. The key to diagnosis is universal newborn screening involving a simple heel prick. The test is one of several screens administered to identify other metabolic and genetic diseases already part of the screening program.

Lillie Johnson, a nurse and founder of the Sickle Cell Association of Ontario, had to fight for universal newborn screening before it was introduced in her province in 2006. In November 2009, British Columbia followed suit, along with Nova Scotia in 2014. In November 2013, the screen was partially implemented in Quebec and later extended to include the entire province in 2016. The sheer determination of Wilson Sanon, president of Quebec’s sickle cell disease association, deserves credit for this accomplishment.

Later, several other provinces signed on. Yet, the disease easily meets the eligibility criteria for this diagnostic test. The test can detect the disease within 24 to 48 hours after birth. It is specific and sensitive to the medical condition targeted. Early screening allows care providers to intervene and create an effective treatment plan with the family. When this kind of response starts in the first few months of life, it helps reduce the frequency of hospitalization, prevents complications and improves the quality of life for these children and their families.

After this test was introduced, hematologist Dr. Yves Pastore and his team observed that the cohort of babies diagnosed with sickle cell disease had almost doubled, from 250 cases to 475, at Montreal’s Centre hospitalier universitaire Sainte-Justine between 2013 and June 2023. Despite the fact that over 100 years have passed since sickle cell disease was first identified, we’re still very far behind when it comes to treatments. We now know that healthy living and certain preventive measures, such as avoiding exposure to extreme temperatures and staying hydrated, can help stave off complications.

In terms of medications, hydroxyurea, a drug first used in the treatment of cancer, has been administered for over 15 years to treat sickle cell disease. It has proven helpful by reducing the frequency and severity of acute pain episodes. Unfortunately, the drug isn’t suitable for every patient.

There are other treatment options, such as blood transfusions, apheresis, a complex technique, and bone marrow transplants, which have been available in Quebec since 1980 and are the only cure we know of. According to Dr. Yvette Bonny, a national pioneer in this particular medical intervention, this treatment can’t be offered to everyone because of the risk of complications. All of these interventions, combined with monitoring by a multidisciplinary team, help improve patients’ quality of life.

Three new drugs have been approved by the Food and Drug Administration, or FDA. I will spare you their complicated names. The research that went into these drugs showed that two of them reduce the number of vaso-occlusive crises and therefore reduce pain. The third improves hemoglobin levels, which clears the anemia. These drugs have proven to be effective if used alone or in combination with hydroxyurea. That’s why it’s necessary to explore new paths of innovation for developing drugs adapted to a wider range of affected patients. This really rings true when we hear a grieving mother say, “we bury our children at a very young age. It is unfair and unjustifiable in 2023 in a country like ours.”

[English]

Here is why you should care about this framework. It will benefit health care professional awareness; the implementation of a research network; the creation of a national registry; full access to newborn screening; public awareness and needed financial support.

[Translation]

In 1971, President Richard Nixon promised research credits and patient care. The following year, in 1972, he signed a new act into law, the National Sickle Cell Anemia Control Act. In later years, a direct correlation was established between funds allocated by the National Institutes of Health and improvements in the quality and lifespan of patients living with sickle cell disease.

Canada must take action too.

Under this national framework, Bill S-280 will provide a six-point plan.

First, it will help mobilize medical regulatory bodies, nurses and other health care professions to encourage their members to learn more about sickle cell disease. It will also help enlist their participation in launching concrete initiatives that meet the training needs of health care providers to strengthen their skills. The development of clear guidelines will also help align practices to ensure a holistic, consistent and effective approach. In the words of one person we interviewed, this framework would fill “the gap in knowledge about the disease among some doctors, who often choose to simply treat symptoms rather than tackle the underlying causes.”

Second, the framework will provide for the creation of a national research network dedicated to advancing the understanding of sickle cell disease. This is a fundamental part of the framework. For example, the Sickle Cell Association of Canada is actively collaborating with the Canadian Hemoglobinopathy Association to promote research and facilitate data collection. This exemplary partnership demonstrates the importance of close collaboration between organizations, researchers and funders.

COVID-19 was a wonderful example of international collaboration that led to the creation of vaccines that are indispensable today. Some will say it was an emergency. However, it can happen again. There is a recent publication concerning gene therapy. It discusses molecular scissors known as CRISPR-Cas9, which will hopefully lead to a curative treatment. It partially restores normal blood formation and reduces, but does not completely eliminate, complications associated with the disease. It has been approved in the UK and is in the process of being approved by the FDA. Canada could also carve out an enviable place for itself in this rapidly developing field, while contributing to the well-being of its people.

Third, implementing this framework will help establish a national registry aimed at reducing existing disparities in the knowledge, diagnosis and management of sickle cell disease.

Dr. Smita Pakhalé, Chair in Equity and Patient Engagement in Vulnerable Populations, couldn’t agree more. In addition, Dr. Giguère says that one of the many advantages of a registry is that it would make it easier to contact people suffering from the disease, in the event of a cure being discovered.

Fourth, implementing this national framework will guarantee equal access to universal newborn screening and sickle cell disease diagnosis across Canada. This would ensure that appropriate care can be administered to all newborns immediately after birth and throughout their life.

Fifth, the framework will serve as a lever supporting national campaigns to increase awareness and understanding of sickle cell disease among the general public, and to better support the well-being of families and caregivers of people living with the disease. These public education efforts by community organizations will reduce the stigmatization of those suffering from the disease and create a supportive, inclusive environment for them and their loved ones.

Sixth, beyond exploring the feasibility of offering a tax credit to the families of people suffering from sickle cell disease, this framework will also look into the possibility of including these individuals in programs for people with disabilities.

This consideration is especially relevant, since many young adults stricken with the disease have a hard time keeping a job due to repeated hospitalizations and the debilitating chronic fatigue caused by the disease.

By integrating all of these aspects, we are seeking to develop a comprehensive framework that takes into account not only medical needs, but also the socio-economic challenges faced by individuals and their families.

Honourable senators, establishing a national framework for sickle cell disease responds to a UNESCO resolution adopted in 2007 and a resolution adopted by the UN General Assembly in 2008. These resolutions were adopted unanimously and recognized sickle cell disease as a public health issue.

In light of everything I’ve just said, it’s imperative to support the passage of this bill to fill the gaps that exist in terms of awareness, research and the national registry. In response to these challenges, we need to move Bill S-280 quickly through committee. I encourage you to head to YouTube and watch a 15-minute clip from an upcoming documentary called Silent Suffering — Sickle cell disease by Mamoudou Camara, which tells the story of a young man suffering from this disease. My office can send you the link, if you wish. Just as we did with cystic fibrosis, Canada can also show global leadership on all aspects of sickle cell disease.

I would like to thank a few people. I want to thank the specialists, Dr. Auray, Dr. Bonny, Dr. Pakhalé, Dr. Cénat, Dr. Giguère, Dr. Pastore and Dr. Soulières for their insightful comments. I also want to thank the presidents of the Canadian and Quebec sickle cell disease associations, Ms. Tinga and Mr. Sanon, for the work they do in that capacity and as parents, as well as for their enthusiasm and contagious perseverance in supporting my initiative when I decided to introduce Bill S-280. I want to thank Ms. Mouscardy, Mamoudou and Ismaël, who gave me a glimpse into their home life to help me understand what it is like to be a parent and a young person living with this disease.

It is your turn, honourable senators, to lend your support to Bill S-280 and send it to committee as quickly as possible. Thank you.

Hon. Marie-Françoise Mégie introduced Bill S-280, An Act respecting a national framework on sickle cell disease.

(Bill read first time.)

Hon. Marie-Françoise Mégie: On Saturday, I had the opportunity to participate in the 10th anniversary of universal neonatal screening for sickle cell disease in Quebec. This disease is not only the oldest known genetic disease in the world, but also the most widespread.

I’d like to thank Wilson Sanon, president of the Sickle Cell Anemia Association of Quebec, for inviting me to the event. It was a gathering of people from the medical, pharmaceutical and community sectors, as well as people with the disease and their families, to mark this important date in the association’s history after many years of hard work.

For me, there were three takeaways. Supporting research is essential. Making information about sickle cell disease easy to understand is crucial. Setting up a national registry is vital.

This disease affects not only the people who have it, but also their family members, their friends and the community as a whole. The Food and Drug Administration’s study of a cure for the disease marks a major turning point.

I’m counting on Canada to be a leader in the fight against sickle cell disease.

Thank you.

[English]

Hon. Marie-Françoise Mégie: My question is for the Government Representative in the Senate.

Senator Gold, in the wake of Minister Miller’s announcement last week, Le Devoir published an article today entitled “Ottawa accusé de faire marche arrière sur son engagement humanitaire après Roxham,” or “Ottawa accused of walking back its humanitarian engagement after Roxham.” Here’s part of what it says:

“I think the meaning of ‘humanitarian’ is being twisted,” said Adèle Garnier, a professor in the department of geography at Université Laval. She believes it is clear that temporary foreign workers “are not humanitarian migrants” according to the traditional definition because this kind of program exists “specifically to meet economic needs.”

According to the article, even though there is already a family reunification program, “The 11,000 Colombians, Venezuelans and Haitians will qualify if a member of their extended family is already in Canada.”

Senator Gold, when will we learn the details of the new program Minister Miller announced, and when will it be on stream?

Hon. Marie-Françoise Mégie: Honourable senators, it is with great pleasure that I rise today to highlight the 19th annual Montreal International Black Film Festival, being held in person and online from September 27 to October 1, 2023.

It is an audacious festival that seeks to promote the development of the independent film industry and showcase films on the realities of Black people around the world. It is a new look on Black film that offers bursaries and awards of excellence.

The MIBFF, formerly the Montreal Haitian Film Festival, has become not only the most important festival of its kind in the country, but also a key player in cultural diversity in Quebec.

Congratulations to Fabienne Colas and her entire organizing team on this 19th annual festival. Thank you.

Hon. Marie-Françoise Mégie: Dear colleagues, I was honoured to see so many of you this morning at the parliamentary sickle cell breakfast. Thank you.

This event, which is put on in collaboration with Senator Gerba and sponsored by the African Canadian Senate Group, gave us a chance to watch a preview of a documentary entitled Silent Suffering, which explores the grim reality facing people with sickle cell disease and their loved ones.

About one in 20 people on this planet carry the sickle cell gene. In some parts of the world, it is one in four. The disease is most common among people with ancestors from Africa, the Caribbean, Latin America, India, the Middle East and the Mediterranean.

In Canada, about one in 2,500 children is born with the disease. Unfortunately, health care providers tend to have a poor understanding of the disease.

The shape of a healthy red blood cell is a biconcave disc. In people with sickle cell disease, red blood cells become rigid and stretch into a sickle shape, hence the name. A pin shaped like a hot pepper serves as a teaching tool for patients and an apt illustration: it burns, it hurts, and it causes suffering.

The most common symptoms of this disease are attacks of acute and chronic pain, or even a stroke, all at an early age. These painful attacks are so intense that they can only be relieved with narcotics, and they recur throughout the child’s life. In such cases, when these young people are admitted to a hospital where medical staff are not familiar with this disease, they often don’t get proper care because they’re labelled as drug addicts.

In the 1970s, people with this disease rarely lived beyond the age of 10. These days, many patients live into their sixties.

That’s why it’s so important to increase awareness of sickle cell disease, and of the importance of neonatal screening and the search for better treatments.

Gene therapy research in Canada is yielding very promising results for the treatment of this rare, hereditary disease. Hopefully the potential cure will be accessible to all sickle cell carriers worldwide.

Happy National Sickle Cell Awareness Day.

Thank you.

[English]

Hon. Marie-Françoise Mégie: Today I rise in honour of the two hundred and twentieth anniversary of the Haitian flag, which was raised in front of Parliament at noon today.

On May 18, 1803, General Jean-Jacques Dessalines ripped out the centre of the French blue, white and red flag. White was seen as symbolic of the White French colonists.

Catherine Flon took the remaining two pieces, one blue, the other red, and sewed them together to represent the union of Black people and people of mixed heritage. Thus was born the Haitian flag.

The centre of the flag features the country’s coat of arms, including a palm tree surmounted by the liberty cap and, under the palm, a trophy of arms with the legend, “In union there is strength.”

Despite all the upheaval Haiti has been through from its independence to now, the Haitian flag remains a strong symbol of unity and hope for its people and its diaspora.

[Editor’s Note: Senator Mégie spoke in another language.]

I wish all my Haitian sisters and brothers a happy two hundred and twentieth Haitian Flag Day.

Thank you.

Hon. Marie-Françoise Mégie: Madam Speaker, congratulations once again on your appointment.

My question is for the Government Representative in the Senate. Canada needs immigrant labour, and Quebec is asking for francophone immigrants. Haiti, a member country of the Francophonie, is very close to Canada and its diaspora has had deep roots here for many decades.

What is Canada waiting for to add Haiti to the list of countries that are eligible for the Temporary Foreign Worker Program?

Hon. Marie-Françoise Mégie: Esteemed colleagues, Dr. Hervé Blanchard passed away peacefully at home in Montreal surrounded by his family on Wednesday, March 29. I extend my heartfelt condolences to his family and to all those he mentored over the years.

Who was Dr. Hervé Blanchard? He was born in Port-au-Prince, Haiti, on August 15, 1932. He graduated from the Faculty of Medicine of the State University of Haiti in 1957. He specialized in surgery at the Port-au-Prince General Hospital and continued his training in Montreal in 1965.

Dr. Hervé Blanchard worked as a pediatric surgeon at the Sainte-Justine Hospital. He completed his training in clinical and experimental transplantation in Denver, Colorado.

In 1969, he began his career as a pediatric surgeon at the Sainte-Justine Hospital as well as an academic career as a professor at the University of Montreal. The university’s department of surgery noted that he was a Quebec pioneer of pediatric liver and kidney transplantation.

Dr. Blanchard also led major advances in the separation of conjoined twins and treatment of other congenital malformations. He shared his expertise with many pediatric surgeons across Canada, as well as in the United States, Latin America, Europe and Africa.

The academic community awarded him the title of Professor Emeritus of the University of Montreal in 2001 and Professor Emeritus of the Canadian Medical Association in 2006.

Between 1982 and 1996 he received numerous awards and tributes from the Haitian community. The City of Montreal and Quebec’s department of citizen relations and immigration awarded him a certificate of honour in 1998.

His family, friends and students all appreciated his qualities, especially his intellectual rigour, compassion and modesty. He is one of the many proud immigrants who have helped build Canada.

Esteemed colleagues, we remain deeply grateful for Dr. Hervé Blanchard’s undeniable contributions to Canadian society and the world.

May he rest in peace. Thank you.

[English]

Hon. Marie-Françoise Mégie: Honourable senators, it is a great honour for me to introduce you to my guest today. She was able to take her rightful place as a Black woman, demonstrate her excellence and make a unique contribution to Quebec society and the advancement of medicine.

Her name is Yvette Bonny. She was born in Haiti in 1938. She studied medicine and provided health care in the rural areas of the country. She emigrated to Quebec in 1961 and did her residency at the Sainte-Justine pediatric hospital in Montreal in 1965. She was the first Black woman resident at that hospital.

She then went on to specialize in hematology at the Saint-Antoine Hospital in Paris, the Royal Victoria Hospital in Montreal and the Maisonneuve-Rosemont Hospital, where she did her residency in hematology in 1967 and in pathology in 1968.

When she began her career, she was the third woman hematologist in Quebec and the first with a specialization in pediatrics. However, it was not an easy road. As a Black female doctor, Dr. Bonny had to work that much harder to gain the confidence of her peers and some parents who, when they saw her, doubted her abilities. She often felt as though she always had to prove that she was the best.

Still, these obstacles did not stop her. Dr. Bonny showed her determination throughout her long and outstanding career. On April 2, 1980, she performed the first bone marrow transplant on a child in Quebec. A bone marrow transplant is a procedure to treat leukemia and other cancers and is now done to treat sickle cell disease, a genetic red blood cell disorder.

She was the only pediatric hematologist performing this procedure in Quebec for many years. Over the course of her career, she performed 200 bone marrow transplants.

Her dedication, compassion and humour earned her the nickname “Patch Adams” among her pediatrics colleagues.

She received many awards and honours throughout her successful career. I certainly don’t have enough time to list them all, but I would like to point out that she was made a knight of the Ordre national du Québec in 2007 and has been a member of the Order of Canada since 2008.

Dr. Bonny has always been an inspiration to me. She has paved the way for young girls from Haiti who dream of working in health care. She is a role model for the Haitian community and especially for all young Black women.

Colleagues, please join me in congratulating Dr. Bonny on all her accomplishments and in wishing her and her daughter, Nathalie Gadbois, a warm welcome to the Senate of Canada.

Thank you.

Hon. Marie-Françoise Mégie: Honourable senators, it is with great pride that I introduce you today to an icon of the Haitian community in Canada. This great lady has 35 years of experience in the largest corporations in the world in corporate credit administration, credit risk and operations, and international trade. She holds a directors education program diploma in governance from the Rotman School of Management of the University of Toronto. She has an ICD.D designation from the Institute of Corporate Directors. She also has a mini-MBA from the McGill Executive Institute.

She earned a certificate in finance from HEC Montréal jointly with the Credit Institute of Canada. She was corporate credit chief at Domtar Corporation since 2008. She is a co-founder of the Excellence Québec initiative, an entity that ensures the inclusion of Blacks in boards of directors. Our colleague, Senator Gerba, is also part of that group.

She actively worked to support the challenges of diversity, equality and inclusion by integrating promising young leaders into the management, finance and governance communities. She has implemented innovative strategies and deployed efficient credit structures across the Americas and in Europe, Asia and the Middle East.

Throughout her career, she has demonstrated her adaptability and leadership as she has held global executive positions in diverse sectors, including culture, health, education, agri-food, technology and telecommunications. Despite her heavy workload, she became involved in community development initiatives in our home country, Haiti, such as Fonkoze and KANPE. These foundations accompany and support the most vulnerable Haitians on the path to financial autonomy.

Ms. Féquière was invested into the Order of Canada on May 25, 2022, in recognition of her distinguished career and achievements. On November 9, the Minister of Foreign Affairs appointed her as the Consul General in Chicago, in the United States.

Esteemed colleagues, I have outlined Madeleine Féquière’s impressive career. Please join me in congratulating her and wishing her success in her new endeavours. Thank you.

Hon. Marie-Françoise Mégie: Welcome to the Senate, minister.

As I’m sure you know, diabetes has a significant and disproportionate impact on Indigenous and Inuit communities. Currently, access to continuous glucose monitoring systems is limited under the Non-Insured Health Benefits program for First Nations and Inuit in Canada.

Given the current drug benefit list, when will you be able to change your policy to make sure Indigenous children get the care and services they need to effectively treat and prevent diabetes?

Hon. Marie-Françoise Mégie: Good afternoon, minister.

Your mandate letter states that you must improve the safety and security of the rail system. When are we going to have tracks separating passengers and dangerous goods?

Based on your response to Senator Housakos — which I was happy to hear — do we have reason to believe that the government will soon move forward with high-frequency rail service powered by clean electricity in the Quebec City-Windsor corridor?

Hon. Marie-Françoise Mégie: Will Senator Wallin take a question?

Hon. Marie-Françoise Mégie: Honourable senators, the author Antonine Maillet once said, and I quote:

Acadians, as a people, will know that they have come into their own when they are focused on their contributions to society, rather than what they need to maintain their own vitality.

To contribute to society, a community must maintain a healthy relationship with that society, have something to offer, and feel included.

That idea certainly applies to the reality of Quebec’s Black communities. The vast majority of Black Quebecers speak French and have an immigrant background.

This brings me to the Quebec election on October 3. Out of the 880 candidates, about 60 were from Black communities. This level of representation was found in every political party and was spread out among more than 40 ridings. I congratulate the 125 candidates who were elected, including the five Black people who will represent 4% of the seats in the National Assembly of Quebec.

I do have one observation to make. Voter turnout this year was just over 60%, well below the 85% that was reached when I arrived in Quebec in 1976. Without identifying a specific cause, a study conducted through the Datagotchi app by researchers at Laval University found that being in good health also means having more chances to vote. In light of the pandemic we just went through, do we need a sound body and mind to have a healthy democracy? That is something to think about.

Let’s continue to encourage all voters to go to the polls.

In conclusion, I hope that the presence of candidates from Black communities is a sign that we are welcome here and that we are fully contributing to a healthy democracy.

Thank you.

Hon. Marie-Françoise Mégie: Good afternoon, minister.

For some agriculture and agri-food businesses, temporary foreign workers have become essential. An article in Le Devoir indicated that 74% of those welcomed through this program do not know French when they arrive in the country, which limits their ability to integrate and understand their rights. All of this creates a double linguistic and economic gap for Quebec and francophone communities in Canada.

Given that Haiti has an abundance of skilled labour, how could you bridge the gap between Haiti and Canada to mutually help our francophone farming populations?

Hon. Marie-Françoise Mégie: Esteemed colleagues, I am happy to rise to speak at third reading of Bill S-209, An Act respecting Pandemic Observance Day.

I would like to thank all members of the Standing Senate Committee on Social Affairs, Science and Technology, chaired by Senator Omidvar, as well as the witnesses, for their contribution to the bill. In addition to the extensive testimony we heard and the many briefs we received during the three meetings to study the bill, my colleagues’ comments also helped to improve the legislation.

In light of what I just said, an amendment was made to the preamble to clarify the intentions of pandemic observance day. The preamble was strengthened, and it explicitly acknowledges the multidimensional effects of the pandemic on every person in Canada, the various forms of public health inequality that resulted, and the pandemic’s disproportionate impact on members of historically disadvantaged groups, including Indigenous peoples, racialized communities, seniors and members of the LGBTQ2+ community. The preamble also identifies three reasons for commemorating pandemic observance day. I talked about them before at second reading, but I improved them with input from our witnesses. The three reasons are the following: to get through, to remember and to prepare.

Reason 1: the duty to get through it. During the Second World War, which lasted six years, more than 45,000 Canadians died. Today, after only two years of the pandemic, COVID has taken the lives of nearly 40,000 people, or the equivalent of the population of Nunavut, and there are currently more than 250,000 active cases in the country, or the equivalent of the populations of Nunavut, Yukon and P.E.I. combined.

Our governments certainly took no pleasure in imposing health measures on the Canadian public. Six months ago, when Bill S-209 was introduced, we were on the eve of the fifth wave of COVID-19 in Canada. Today, the sixth wave is receding. When we returned from Easter break, the risk was still considered high by the Public Health Agency of Canada, because of the arrival of Omicron subvariants BA.1, BA.2 and BA.3. During that time, the number of COVID cases doubled in Canada, and the number of deaths rose from 30,000 to 40,000, an increase of 33%.

Despite these statistics, the Public Health Agency of Canada has just amended its epidemiological publications. It is talking about higher and lower risks for Canadians, based on several factors such as vaccinations and available treatments. It is a paradigm shift: We are shifting from collective risk management to individual risk management.

In this regard, an internet site was developed by the National Institute on Ageing, part of what was formerly known as Ryerson University, to help people, based on their age and health condition, understand the factors that contribute to the risk of getting the virus during visits or gatherings. Many of these factors inform us on the risk of contracting other respiratory infections, such as the flu. In three minutes, the calculator can help you assess your risk of catching or spreading viruses.

Does this paradigm shift mean that we will soon emerge from the pandemic? We strongly hope so, especially with the warm weather of the past few days. However, experts are reminding us that the pandemic is not quite over, and thus it is important that we continue to comply with health measures. New variants might still emerge, and, as Quebec’s director of public health has said, a seventh wave is possible. We hope it doesn’t happen. We must continue to be vigilant and do everything in our power to limit the spread of the virus.

That said, here in Canada we have the privilege of having access to several measures to combat the pandemic.

In terms of prevention, we have tests and vaccines available. In terms of treatment, we have drugs to treat COVID-19. On the organizational level, remote work is still helping to slow transmission.

We have independent and trusted public health agencies. The vast majority of Canadians are informed and vigilant. Furthermore, Health Canada just approved the use of a COVID-19 prevention drug for immunocompromised people.

If we remain vigilant, we will improve our chances of making it through.

Scientific studies agree that we will have to continue our efforts on a global scale if we are going to put an end to the pandemic. The only way out is by fighting together.

Reason 2: the duty to remember. There are a lot of people we will have to remember. We must remember our seniors who died of COVID-19 in care homes and experienced a very painful, lonely and undignified end of life. We must remember the families who are grieving, and the already marginalized groups of people who were disproportionately affected by the pandemic. We must remember their lives and their suffering.

We must also remember another group we don’t hear much about, the children orphaned by COVID-19. An article by Isabelle Paré in the daily newspaper Le Devoir, on March 1, had this to say:

The number of children orphaned by COVID-19 has nearly doubled in the past six months, bringing the number of children who have lost a father, a mother or primary caregiver to 5.2 million, or one every six seconds. As many as 2,000 children are estimated to be affected in Canada.

We need to think about them.

We must remember those who were on the front lines, sometimes risking their lives, to care for and support the sick. We must pay tribute to their courage and show them our gratitude. They are our guardian angels.

We must also remember the work and dedication of essential workers in other areas.

There are many of them, and they are often unsung heroes. They work in transportation, driving ambulances, cabs, big rigs and delivery vehicles; teaching and education; food services; security and policing and so on. The list is long. By providing continued service to the public, they helped keep us going during this difficult time. A big thank you to the artists who helped ease our minds during the lockdown and who continued to work even though they could not perform in public.

Let’s also remember the young people who faced serious upheavals in their academic career. The lockdowns strained social ties among young people, causing feelings of isolation and damaging their mental health. This also resulted in an increased risk of dropping out.

Let’s also remember those who have suffered major financial losses, either because their business went bankrupt or because they lost their job. These people will struggle to recover from such economic setbacks.

Let’s remember the general public, the sacrifices everyone made, their resilience and their respect for health restrictions. It’s also important to recognize the outpouring of mutual assistance and solidarity in all of our communities.

The health care system was surprised and overwhelmed by the magnitude of the crisis, and it definitely showed some cracks. In that regard, one of the witnesses at the Social Affairs Committee, Dr. Straus, from the Royal Society of Canada, reminded us to also celebrate all the positive things that have been done over the past two years.

She gave some examples, such as the expansion of the scope of practice and the creation of task shifting teams to look after patients in different settings.

Health authorities adapted to the urgency and uncertainty of the onset of the pandemic. To use an expression heard frequently over the past two years, we were building the plane as we were flying it.

There have been significant advances in research, such as the creation of national platforms, international cooperation on research for large-scale clinical trials and the quick switch of health professionals to virtual care. All this happened in a relatively short period of time. These are good outcomes that deserve to be highlighted and made permanent.

How should we commemorate? Like any day of celebration, this will be a time to pause that will foster reflection and individual and collective action.

The bill gives everyone the freedom to celebrate this day as they wish. This flexibility was appreciated by the witnesses. Many of them told us this when they appeared before the committee.

Individuals and groups can celebrate this day in a way that will reflect the nature and intensity of their suffering, their needs and their cultures.

Witnesses mentioned several times the need to reflect, to gather so as to break the isolation, and to create a place to come together and share. Some people might express their pain, begin the grieving process and share their thoughts in order to suggest solutions for moving forward. Spiritual rites and ceremonies could also be organized.

With today’s technology, various platforms can be used for virtual meetings, collective action and disseminating scientific information. Technology can also be used to raise awareness about mental health and serve as a reminder of the importance of social interaction, as mentioned by Hannah Ehler of the Canadian Alliance of Student Associations.

Community organizations that work with vulnerable people can plan events based on the needs at any given moment, while respecting the cultural traditions of these groups.

For governments, this could be a day of reckoning, a day for discussing what worked and what didn’t work, a day for learning lessons in order to build sustainable solutions for the future.

With such a wide range of potential commemorative activities, and given that the population’s needs shift over generations, this bill is not intended to be prescriptive. That is its strength. Bill S-209 leaves room for the imagination and creativity of individuals and communities.

In her report on the first wave of COVID-19, Quebec’s ombudsman made the following recommendation:

[We must] establish annual events to remember the loss and suffering. That must also be an opportunity to recognize the essential and generous contributions of all those who have carried the burden of service and care during this troubled time.

The Public Health Agency of Canada also affirmed that this kind of global catastrophe must never be forgotten.

La Presse columnist Alice Girard-Bossé wrote an article about those statistics entitled “On a oublié les visages derrière ces chiffres” — we have forgotten the faces behind the numbers. In it, she quotes Dr. Donald Vinh, an infectious disease specialist and microbiologist at the McGill University Health Centre, as follows:

Because of overexposure to data combined with pandemic fatigue, Quebeckers now see these deaths merely as numbers, said Dr. Vinh.

The article goes on to say:

Ève Dubé, a medical anthropologist with the Quebec National Institute of Public Health, the INSPQ, agrees: “It is easy to ignore a number of deaths if you do not stop to think about it. When the dead are not our parents and grandparents, it is very abstract.”

Experts indicate that desensitization has consequences.

According to INSPQ surveys since March 2020, the perception of risk related to COVID-19 has declined steadily.

Social media is also a factor. Today’s news is no longer news tomorrow, and things are quickly forgotten, at the risk of repeating past mistakes.

For example, in March 2022, Italy and Ireland marked a remembrance day for COVID-19 victims.

On March 11, the Premier of Quebec lowered the flag at the National Assembly to half-mast. Other than that, virtually nobody noticed March 11. The pandemic is already being forgotten.

Reason 3: the duty to be prepared. To achieve that, we need an up-to-date picture of the situation. The goal is to do better next time. Alongside the present situation I have been talking about, we are seeing another significant impact. Senator Poirier talked about it earlier: long COVID.

We need to study its impact on our population, our health system and the long-term generational socioeconomic costs of the disease.

Immigration, the backbone of our growth, is another issue that will come up in the post-pandemic period. It has ground to a halt.

More than 1.8 million cases were waiting in the queue as of February 1, according to the immigration minister. This pandemic paralysis is having a significant impact on the economy, which currently has nearly one million jobs to fill. It is also affecting the demographic weight of francophone communities from coast to coast to coast.

The list of actions to be taken to prepare for the future will have to be the subject of more sustained and comprehensive reflection. This could be done in due course, probably by a parliamentary committee, to examine the repercussions of the pandemic.

In this regard, the Auditor General of Quebec tabled a report yesterday that includes an entire chapter on how personal protective equipment was managed during the pandemic. This is a good example to follow.

In response to questions from members of the Social Affairs Committee, the witnesses made some interesting proposals. They called for federal leadership. Basically, we will have to consolidate the gains made and plan for the future in the short, medium and long term.

However, as I already explained, Bill S-209 is not prescriptive, not for the public nor for governments. It allows everyone the freedom to choose how they want to commemorate this pandemic observance day.

In closing, I thank Senator Duncan, our colleagues who spoke about this bill, and the critic, Senator Poirier. I would also like to thank my office staff for their hard work to get this bill to third reading.

Every annual commemoration on March 11 will serve to remind us of what happened, both the tragic events and the display of solidarity and empathy within communities. I am counting on you, colleagues, to make all of this possible by passing Bill S-209, An Act respecting Pandemic Observance Day, and sending it to the other place in order for the legislative process to take its course.

Thank you.