National Sickle Cell Awareness Day Act

An Act respecting National Sickle Cell Awareness Day

Status

Report stage (House), as of May 9, 2017

Subscribe to a feed (what's a feed?) of speeches and votes in the House related to Bill S-211.

Summary

This is from the published bill. The Library of Parliament often publishes better independent summaries.

This enactment designates the nineteenth day of June in each and every year as “National Sickle Cell Awareness Day”.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, provided by the Library of Parliament. You can also read the full text of the bill.

Votes

Feb. 15, 2017 Passed That the Bill be now read a second time and referred to the Standing Committee on Health.

HealthCommittees of the HouseRoutine Proceedings

May 9th, 2017 / 10 a.m.
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Liberal

Bill Casey Liberal Cumberland—Colchester, NS

Mr. Speaker, I have the honour to present, in both official languages, the ninth report of the Standing Committee on Health in relation to Bill S-211, An Act respecting National Sickle Cell Awareness Day. This follows the lead of the United Nations in recognizing the most common genetic disease in the world. The committee has studied the bill and has decided to report the bill back to the House with no amendment.

I would like to thank the member of Parliament for Dartmouth—Cole Harbour and Senator Jane Cordy for sponsoring this bill and bringing it forth in such good order. I want to thank all the members of the Standing Committee on Health for their diligence and deliberation on this bill as we sought an answer.

May 4th, 2017 / 12:20 p.m.
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Liberal

The Chair Liberal Bill Casey

That's it. We're done with this. Now we refer this to our legal expert here to finish up. That is Bill S-211.

Congratulations, Mr. Fisher. It was a tough battle, but we got it through.

May 4th, 2017 / 12:20 p.m.
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Liberal

The Chair Liberal Bill Casey

We'll reconvene and begin.

I noticed that Mr. Fisher is in the audience. I don't know if he wants to say anything. He's a proponent for Bill S-211, which we're going to consider clause by clause. We have no witnesses. We have no discussion. We're going to move right to clause-by-clause.

Pursuant to Standing Order 75(1), consideration of clause 1, the short title, and the preamble is postponed. We'll move to that later.

(Clauses 2 and 3 agreed to)

Shall the short title carry?

May 4th, 2017 / 12:10 p.m.
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Liberal

The Chair Liberal Bill Casey

Time is up.

That concludes our session, Mr. Doherty. It sounds like you've been on quite a journey. If I read the committee right, I think you've made a little progress on your journey today. The committee will be having other hearings with witnesses, and you're welcome to attend at any time and help us in any way.

With that, I'm going to call a short break and then we're going to move to Bill S-211, the sickle cell bill. We'll take a quick break and be right back.

April 4th, 2017 / 12:55 p.m.
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Liberal

The Chair Liberal Bill Casey

We will delay those meetings until we have the information, I would say. That would be my opinion. The committee would have to decide, but that would be my suggestion. We wanted that very specific information.

Any other questions?

The clerk is suggesting that yesterday was the deadline for witnesses for our Bill S-211 sickle cell study. He's suggesting that we move it to Friday. So April 7, this Friday, will be the deadline for the witness list for the sickle cell bill.

We asked Dr. Gahagan to send us a study she referred to. She sent us 124 pages. That is going to take a lot of work to translate. We have a scientific summary and we're proposing to translate those four pages and distribute them. Is that all right with the committee—instead of 124 pages?

March 21st, 2017 / 12:05 p.m.
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Liberal

The Chair Liberal Bill Casey

I think we're going to find a way to do that thanks to Mr. Oliver's proposal If we can do Bill S-211 very quickly, we're going to try to do that.

Also, we all seem to be operating with different calendars here. I've got my own calendar, but I'm going to share my calendar, for what it's worth, with everybody henceforth so you can see what I'm working with. Sometimes it doesn't coincide with others'. I'll work with the clerk to come up with a calendar to accommodate everything as best we can.

Mr. Davies.

March 21st, 2017 / 11:45 a.m.
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Liberal

The Chair Liberal Bill Casey

Okay.

I want to go to the schedule now. I think on Thursday we're starting our study on the effects of violence and pornography. Then on April 3 we have another session on the same subject. The minister is coming on April 6. On April 11, we're back on pornography. On April 13, we're proposing to do the clause-by-clause of Bill S-211, on sickle cell recognition day, quickly. On that same day, we can possibly also have a pharmacare update from the PBO.

Does everybody agree with those so far?

I'm proposing that we do clause-by-clause on the sickle cell bill, if that's okay with everybody. It's just to recognize sickle cell day. They're anxious to get it done for this year. So on April 13, we'll do clause-by-clause on Bill S-211.

On May 2, we have a pharmacare meeting and the fourth day of a steering committee, proposed. On the 9th and 11th, we have our thalidomide study. Then on the 16th and 18th we have the anti-microbial resistance issue to consider. I need some direction on where we're going to go with that. I understand there's a lot of concern about the anti-microbial resistance issue. My proposal is that we do that on the 16th, the 18th, the 30th, and on June 1.

Are there any thoughts on that?

Dr. Carrie.

National Sickle Cell Awareness Day ActPrivate Members' Business

February 15th, 2017 / 5:55 p.m.
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Liberal

The Speaker Liberal Geoff Regan

The House will now proceed to the taking of the deferred recorded division on the motion at second reading stage of Bill S-211.

The House resumed from February 8 consideration of the motion that Bill S-211, An Act respecting National Sickle Cell Awareness Day, be read the second time and referred to a committee.

National Sickle Cell Awareness DayPrivate Members' Business

February 8th, 2017 / 6:45 p.m.
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Liberal

Darren Fisher Liberal Dartmouth—Cole Harbour, NS

Mr. Speaker, I am delighted to rise today to speak to Bill S-211, an act respecting national sickle cell awareness day. Senator Jane Cordy, from my riding of Dartmouth—Cole Harbour, has worked tirelessly on this important bill, and I commend her for the hard work she has put in to see the bill to fruition. I understand that there is a rumour that she may be nearby.

Bill S-211 has been unanimously supported, without amendment, in the Senate and thus far throughout this House. I would like to thank the many members who have spoken on sickle cell in the House during the process.

Let us recap. Sickle cell predominantly affects those with diverse ethnic backgrounds, including African, Caribbean, Mediterranean, Middle Eastern, South American, and South Asian. It is a hereditary genetic disease that features abnormal hemoglobin. The abnormality causes crescent-shaped red blood cells, which have a shortened life span. They clog blood vessels and starve the body's ability to deliver oxygen to its organs.

This disease is debilitating. Sufferers experience extreme pain, are often bedridden, and have reduced life expectancies. Those with sickle cell routinely have 10 to 20 blood transfusions a month. This disease does not have a cure, and over 5,000 Canadians are living with the disease every day.

There is a serious lack of awareness of sickle cell, and as I mentioned, sickle cell anemia disproportionately affects minorities. Just this week, I met with members of the Black Health Alliance, who told me that Canada lacks nationwide race-specific data and that diseases affecting minorities are often not as researched as others. I firmly believe that a bill like Bill S-211, which promotes awareness and gets people talking, will help this important cause.

Sickle cell disease affects almost 100 million people worldwide, yet many members and constituents have come up to me since I sponsored the bill and let me know that they had no idea what sickle cell disease was.

Sickle cell is the most common genetic disease in the world, and the lack of awareness is astonishing. Many Canadians are currently unaware that they are living with the sickle cell trait, meaning that they are hereditary carriers of the disease. Greater awareness and consistent newborn screening in all provinces and territories would help. The Sickle Cell Disease Association of Canada is currently advocating for a national newborn screening program, which would also help identify carriers of this trait.

Some unknowing sickle cell sufferers have been dismissed as would-be patients looking for pain killers. When left untreated, sickle cell disease is often fatal.

June 19 has been recognized as World Sickle Cell Day since 2008. By joining me in passing Bill S-211 ,we can increase public knowledge and bring awareness to the struggle sickle cell disease sufferers live with every day. Better awareness leads to better research and understanding, and better research will lead to more compassion and better health care for those with sickle cell disease.

I ask all members of the House to join me in supporting Bill S-211 to establish June 19 as national sickle cell awareness day.

National Sickle Cell Awareness DayPrivate Members' Business

February 8th, 2017 / 6:35 p.m.
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Liberal

Gary Anandasangaree Liberal Scarborough—Rouge Park, ON

Mr. Speaker, first, I would like to thank my friend from Saskatoon—Grasswood for taking away 90% of my speech, but a very eloquent outline of the issues with respect to sickle cell, and I thank him for that.

Let me begin as always by acknowledging that we are gathered here on the unceded lands of the Algonquin people.

I want to thank Senator Jane Cordy from Nova Scotia for passing Bill S-211, an act respecting National Sickle Cell Awareness Day in the Senate. Her hard work over the years on this issue came to light with the passage of this bill in the Senate. I certainly want to thank my good friend from Dartmouth—Cole Harbour for sponsoring it in our House and for his great advocacy on this issue.

Before I entered politics, my understanding of sickle cell was very limited. I must admit that it was on a tour during Black History Month two years ago, with my good friend from Bourassa, of a local community health centre called Taibu that I found out about sickle cell disease. Taibu Community Health Centre is the first and only black focused health care centre in North America, and I would say in the Americas.

I learned that many young people face an uncertain future due to bouts of pain that limit them from reaching their full potential.

There are systemic challenges in accessing medical services and government programs, due to a lack of understanding of the disease. For example, for CPP disability, accessing disability tax credits and those types of facilities that are available to those who have long-term conditions are often unavailable to those suffering from sickle cell disease.

There is a lack of support for family members caring for their loved ones, and the disease disproportionately affects members of the African Canadian community, as my good friend from Saskatoon—Grasswood said. The lack of awareness about the disease often results in individuals being underserved by our health care system as a whole, including in the areas of research.

The fact that treatment and knowledge of the disease vary from province to province, and even from hospital to hospital in a particular region compounds the problem. It is one of the most common genetic diseases in Canada and one that has serious effects upon the lives of those suffering from it. Currently, people with sickle cell disease live with life expectancies as much as 30 years lower than the general population.

Let us look at the disease. Sickle cell anemia is caused by a mutation in the gene that makes an individual's body produce haemoglobin. Haemoglobin is the component in red blood cells that allows them to carry oxygen from the lungs to the rest of the body. In people with sickle cell anemia, the abnormal haemoglobin causes red blood cells to become rigid and sickle shaped due to a hardening of the irregular haemoglobin into long rods. Individuals who are sickle cell carriers have only one sickle gene and do not usually experience serious symptoms. However, as carriers of the disease, they are able to pass it on to their children if their partners have the disease or are also carriers.

The symptoms of sickle cell effects are as follows. Sickle cell disease affects each person differently and can manifest in many ways. For example, it may damage the spleen, cause bouts of pain, delay growth in children and adolescents, damage vision.

Around 10% of children with sickle cell disease have suffered strokes, and one in four adults have suffered strokes. It can cause life-threatening chest conditions, high blood pressure, blocked blood flow to kidneys and liver, open sores on patient's legs, gallstones, and priapism among men.

Treatment is often quite complicated. It can be treated in two ways, one by pain management, or through blood transfusions. Unfortunately, both methods of treatment are not without side effects.

I want to share a very personal story, one that involves a very dear friend of mine. My friend and her partner both have the sickle cell trait and therefore are carriers of the disease. Their first child was born in 2005, and at that time there was no mandatory pre-screening process for sickle cell disease in Ontario hospitals. It was not until a few months after his birth that they discovered that he was a carrier.

By the time their second child was born, the process had changed significantly in Ontario. My friend and her partner received genetic counselling, and the process of testing children after birth had become standard in Ontario, as it would in Saskatchewan as well.

This test performed shortly after their second son's birth revealed that he had inherited the sickle cell trait from both parents and thus had sickle cell disease. Early detection provided my friend with the tools and counselling necessary to take control of the situation and ensure that their son receives the care he needs. However, today only six out of 10 provinces require early detection for sickle cell disease.

Today my friend's second son is a relatively healthy boy, and the treatment he has had since his first acute chest crisis, at age one, hydroxyurea and daily amoxicillin, as prophylaxis, have kept most of his symptoms at bay. Despite the young boy faring well for someone with sickle cell anemia, my friend and her family have nevertheless spent countless nights in the hospital and even more time taking him from doctor to doctor. Due to the seriousness of sickle cell disease, every fever must be treated as an emergency, and any sign of pain is frightening.

My friend is relatively lucky. Her family is a middle-income family. Her mother is happy to look after her son, so she does not have to worry about him during the day as she works. She has a flexible work environment that allows her to take time off when necessary. While my friend can effectively navigate the health care system because of her advocacy skills, this is not available to most people, particularly those from racialized communities.

On a broader level, sickle cell disease has not been given the level of attention it deserves due to the fact that it primarily affects particular communities. These communities, in particular the black community, often face more than one level of discrimination.

In Canada, second-generation black Canadians face lower wages and almost twice the unemployment rate when compared to other Canadians. This economic disparity makes it more difficult to raise awareness about sickle cell disease inside and outside the health care system, as many people in the sickle cell community are not traditional power brokers in Canada.

If a parent of a child with sickle cell disease were working a minimum wage job, it would be virtually impossible for that person to take time off work to care for a sick child and be able to pay the bills. Attending every shift might make the difference in affording the necessary medication or healthy food that people with sickle cell anemia need to remain healthy. In fact, in these situations, having a sick child can result in parents not being able to hold down a job.

The lack of awareness about sickle cell disease only exacerbates the problem. Employers who do not understand the disease might also not be as accommodating when staff members must take time off to care for a relative or because of their own pain crises.

One of the major reasons people with sickle cell disease are being underserved by the health care system is a lack of awareness. This is a disease that individuals can die from if not treated appropriately.

Last month was a very difficult month. I saw first-hand the effects of sickle cell disease. I was able to attend a memorial for Kesten Petgrave, who was a client of the TAIBU Community Health Centre. Kesten died on January 7, on his birthday, due to complications associated with sickle cell disease. Kesten was actively involved in advocating for those who live with sickle cell disease through various groups and organizations. He mentored children and youth who attended Camp Jumoke and was active with the sickle cell support group at TAIBU. He was talented and expressed himself through various forms of art, including music. This is the real face of sickle cell disease.

Declaring June 19 national sickle cell awareness day will serve as an annual reminder of the suffering people go through.

I want to take a moment to acknowledge the individual victims and their families and all the organizations that have worked so hard on this issue over the years. In particular, I want to call out the TAIBU Community Health Centre, the Sickle Cell Awareness Group of Ontario, the Sickle Cell Disease Association of Canada, the Sickle Cell Association of Ontario, the Black Health Alliance, and Camp Jumoke for the great work they have undertaken over the years.

If more Canadians were aware of the repercussions and the effects on individuals and families, we would be much more inclined to put research dollars and additional support toward those who need the help.

I want to thank the Senator, as well as my friend, as well as all those who have spoken in support. I ask the House to support the motion unanimously so that June 19 can be declared sickle cell awareness day.

National Sickle Cell Awareness DayPrivate Members' Business

February 8th, 2017 / 6:30 p.m.
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Conservative

Kevin Waugh Conservative Saskatoon—Grasswood, SK

Mr. Speaker, I have this booming voice and usually everybody listens. I guess I will tone it down for the rest of this speech.

Some people with very severe sickle cell disease require frequent blood transfusions every three to six weeks. This procedure uses a machine that separates and discards the patient's own red blood cells, while transfusing the non-sickle donor blood into the person. Because they are receiving so much donor blood on a frequent schedule, they require blood that is phenotypically similar to their own blood. This means a person with African heritage requires blood donated from a person with the same heritage. Thus, finding an appropriate donor is often an issue in Canada, although it is improving.

Once patients are started on scheduled blood transfusions, they also have to start medications to decrease the amount of iron that builds up in their body, which is a side effect of frequent transfusions. This treatment, as we all know, is very expensive, and often starts with a pump that releases the medication slowly into people though needles in their abdomens. Unfortunately, they are required to have the pump running, sometimes from eight to 24 hours a day.

One of the biggest challenges for managing sickle cell disease is when a person in crisis or with a fever sees a health care practitioner who is not familiar with the disease. Any delay in treatment can be life-threatening and, unfortunately, often is.

I have learned that in Saskatchewan we do not track the number of people with sickle cell trait, although in the last year the pediatric haematology met 14 new children in our province of Saskatchewan with carrier status. They now follow 17 children living in Saskatchewan, and many in my riding of Saskatoon—Grasswood, with the full sickle cell disease, a population, I might add, that has increased by 30% in the last nine months.

In Saskatchewan, sickle cell disease is primarily found in people who have immigrated to Canada or are first generation Canadians. Many of the new Canadians are actually unaware of their sickle cell status, until arriving in Canada and taking their child into a hospital with a crisis. This ultimately leads to a diagnosis of sickle cell disease for the person in crisis and a diagnosis of sickle cell trait for the rest of the family, even though the family is from a country with high levels of sickle cell disease.

We have many volunteers in my city of Saskatoon. In fact, they are arranging a blood drive targeting people with African, Caribbean, East Indian, Middle Eastern, and Mediterranean heritage. That will take place this March. We will have a big donate blood awareness.

The Sickle Cell Disease Association of Canada is planning to begin advocating for expanded newborn screening in my province of Saskatchewan, which would include testing for sickle cell anemia. Remember, as the number of people with sickle cell trait increases in Canada, there is more risk of children being born with sickle cell disease.

As I see it, there are three important things we can do to combat this disease. First and foremost, we all agree we can devote more resources to research and finding a cure. We can raise awareness, like we have tonight, through Bill S-211. Last, we can encourage all regular blood donations in our communities.

National Sickle Cell Awareness DayPrivate Members' Business

February 8th, 2017 / 6:25 p.m.
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Conservative

Kevin Waugh Conservative Saskatoon—Grasswood, SK

Mr. Speaker, it gives me great pleasure tonight to speak to Bill S-211, an act respecting national sickle cell awareness day.

The United Nations, the African Union, and the World Health Organization have all recognized sickle cell disease as a public health priority. They also all recognize June 19 of each year as World Sickle Cell Awareness Day. World Sickle Cell Awareness Day has been held on June 19 since 2008. That day was chosen to commemorate the day on which a resolution was officially adopted by the General Assembly of the United Nations. It recognizes sickle cell disease as a public health concern.

Quite honestly, until last September, I had heard about sickle cell disease but actually had no idea what it was or how serious it could be. I had the opportunity, though, to meet with members of the Sickle Cell Association of Canada, including my constituent in Saskatoon—Grasswood, Mr. Craig Eling. Craig has been a big help in preparing me for my remarks in the House today.

I would like to give some facts about this disease.

Sickle cell disease is the most common inherited blood-related disease. The World Health Organization, the WHO, estimates that up to 5% of the world's population are healthy carriers of the gene for sickle cell disease. It is most commonly found in people from sub-Saharian Africa, the Middle East, Mediterranean countries, and parts of India.

People get one gene from each of their parents. A person with one gene for sickle cell disease is known as a carrier, also known as sickle cell trait. Individuals live normal lives and are very rarely affected by their single gene, but here is where it becomes complicated. A person with two genes has sickle cell disease, also known as sickle cell anemia, and their lives are greatly impacted by this condition.

Sickle cell disease results in the production of abnormal red blood cells, which are shaped like a crescent moon or the letter "C." Normal red blood cells look like a doughnut without the hole. Sickle shaped blood cells like to get stuck because of the points on either end of the crescent moon shape, which causes many of the issues associated with the disease. The most common place they get stuck is in the organ that cleans the blood. That of course is the spleen. Because they get stuck in the spleen, it withers away by the time a child with sickle cell disease is about 5-years-old. Although people can live without their spleens, they are more at risk of certain types of blood-borne bacterial infections.

As soon as children are diagnosed with sickle cell disease, some as early as birth, they are put on daily antibiotics to prevent an infection. At an appropriate age, they will receive extra immunizations. This also means that the presence of a fever in a person with sickle cell disease could indicate a bacterial infection and such situations are considered a medical emergency that requires prompt treatment with antibiotics and sometimes even hospitalization.

A normal red blood cell lives in the body for about 120 days, while sickle cells live for about 10 to 20 days. The body is constantly destroying the sickle cells and working to produce fresh red blood cells. This can lead to chronic anemia, where the blood is unable to carry enough oxygen to all parts of the body. The common effects of chronic anemia are ongoing tiredness, pale skin, weakness, and delayed growth in development in children.

A crisis occurs when enough crescent moon shaped sickle cells jam up in a blood vessel, causing a disruption of normal blood flow. The body tissues downstream of the blockage lose oxygen and begin to die, which causes, in some cases, severe pain.

If not promptly treated, the loss of oxygen can lead to permanent damage to affected areas. The most serious and really the most relatively common outcome of sickle cell disease is a stroke. This can occur in children as young as two years old.

To prevent crisis, people with sickle cell disease must stay well hydrated and avoid rapid temperature changes. Children often cannot play outside in winter. They are also asked to avoid intensive exercise, eat a balanced diet, stay well rested, and avoid smoking.

They are required to take a special medication every day to decrease the amount of sickle cells the bone marrow produces and avoid crises. The only cure for sickle cell disease is a bone marrow transplant, which, by the way, does not occur very often because of a lack of an appropriate donor. Even though we have a bone marrow registry connected to worldwide donors, the best chances of an acceptable match would actually be a person's siblings.

The House resumed from December 1, 2016, consideration of the motion that Bill S-211, An Act respecting National Sickle Cell Awareness Day, be read the second time and referred to a committee.

National Sickle Cell Awareness Day ActPrivate Members' Business

December 1st, 2016 / 7:05 p.m.
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Brampton West Ontario

Liberal

Kamal Khera LiberalParliamentary Secretary to the Minister of Health

Mr. Speaker, thank you for the opportunity today to voice my strong support for this very worthy and necessary legislation. I am proud to promote and support Bill S-211, an act that would make June 19 a national day to raise awareness for sickle cell disease, or SCD for short.

I want to thank Senator Jane Cordy and the member for Dartmouth—Cole Harbour for bringing this extremely important bill to the House.

By supporting the bill, we can join the African Union, the United Nations, and the World Health Organization in observing world sickle cell awareness day on the June 19 every year. Setting aside this dedicated day is not about joining an international club. It is about supporting people living with sickle cell disease, a devastating genetic disorder that affects millions of people around the world, including an estimated 5,000 Canadians.

People with sickle cell disease experience frequent bouts of debilitating pain that damages their quality of life and which, very often, shortens their lives. This is a very complex disease that still baffles the medical community.

To try to explain it simply, people who have SCD inherit two abnormal hemoglobin genes, one from each parent. At least one of the two abnormal genes causes a person's body to produce an abnormal type of hemoglobin called “hemoglobin S”. When the person has two hemoglobin S genes, the disease is called sickle cell anemia. This is the most common and generally most severe kind of sickle cell disease.

Without getting too technical, sickle hemoglobin is not like normal hemoglobin. It can form stiff rods within the red blood cell, changing it into a crescent or sickle shape. These cells are not flexible and stick to vessel walls. This can cause a blockage that slows or stops the flow of blood. When this happens, oxygen cannot reach nearby tissues, leading to a long list of complications that can compromise the person's life.

Sickle cell disease provokes attacks of sudden, severe pain that can occur without warning. The person usually needs to go to the hospital for treatment. Blood transfusions and drug therapies are used to treat and manage the disease. Stem cell transplants are the only potential cure.

It is hard to watch a child suffering from a pain attack, but it is heartbreaking to know that this is something they will rarely escape as they grow older. Adolescents and adults with SCD often suffer from chronic pain that limits their ability to attend school or go to work. Needless to say, this has negative ripple effects on their families' incomes and housing.

However, even that does not capture the long-term consequences of SCD. Over a lifetime, the disease can cause major organ damage that eventually results in premature death. Tragically, most will endure excruciating pain for most of the years they have.

As much as this takes a terrible toll on the individuals involved and their loved ones, it also comes at a high price for the health care system. The lifetime cost for a patient with sickle cell disease has been estimated at $9 million. In Canada, the total cost to treat patients with sickle cell disease for their lifetime may be approximately $4.5 billion.

More than dollars and cents, common sense dictates that we must do whatever we can to improve the lives of these individuals. I have seen patients who suffer from this serious blood disorder. In every case, I can attest to the serious health challenges they face. Therefore, I know how crucial it is that we raise awareness of sickle cell disease.

I also know from experience the importance of genetic testing for prospective parents and the necessity of screening newborns for the disorder. Early diagnosis and regular medical care can prevent complications and improve the well-being of affected individuals and their families.

Sickle cell disease is most common among individuals whose ancestors come from India, Saudi Arabia, and Mediterranean and sub-Saharan African countries, but in rare cases, it also affects Caucasians.

One of the best ways Canadians can help is by donating blood to provide sickle cell disease patients with the blood transfusions they require, not just on June 19 but every day of the year. Donors are especially needed from ethnic communities whose heritage traces back to the Mediterranean, Middle East, South Asia, Africa, and the Caribbean.

We also need to find ways to better educate Canadians about this disease and explore ways to work more productively with our partners all across the country to provide better support for sickle cell disease patients and their families.

Especially important is to continue research programs that spawn new sickle cell disease treatments that will someday lead to a cure.

Advancing these goals is precisely what Bill S-211 sets out to do. Once passed, this bill would dedicate June 19 as national sickle cell awareness day in Canada. This would send a clear signal to everyone, as a nation, that we need to improve the diagnosis and treatment of sickle cell disease and demonstrate our unwavering support for Canadians living with this terrible disease.

Earlier this year, I had the pleasure of meeting with members of the Sickle Cell Disease Association of Canada. I am proud of the work already under way in this country to alleviate the chronic pain of sickle cell disease sufferers.

Through the Canadian Institutes of Health Research, the Government of Canada has invested resources in rare disease research, including $1.3 million for sickle cell disease research, since 2010. Top researchers across Canada are actively working to identify long-term solutions to the health problems facing people with sickle cell disease.

CIHR is also a founding member of the International Rare Diseases Research Consortium. It was established to explain the causes of rare disorders and to develop diagnostic tools and treatments. There are currently four sickle cell disease clinical trials under way as part of this major international research initiative.

These studies will contribute to increasing our knowledge about the disorder and hopefully lead to the discovery of new treatments while ultimately pinpointing the cure that people with SCD seek. Until that day comes, the Government of Canada will continue to work with our provincial and territorial partners. Together we will address the health challenges confronting Canadians as we transform Canada's health system to ensure that it meets the needs of each and every one of us.

It is now up to all parliamentarians to do their part by designating June 19 national sickle cell awareness day in Canada. I encourage all members to lend their support to Bill S-211, which would provide people living with sickle cell disease the national recognition they deserve.

Once again, I want to thank Senator Jane Cordy and the member for Dartmouth—Cole Harbour for bringing this extremely relevant piece of legislation to the House. Canadians with sickle cell disease are counting on us to improve their lives and livelihoods as we improve their health and quality of life. Let us make sure we do not let them down.