Garnett Genuis Conservative Sherwood Park—Fort Saskatchewan, AB

Mr. Speaker, it is a pleasure for me to rise to debate this very important bill before the House today. I suspect I will breathe a little less fire in this speech than I did in the one I gave earlier this afternoon.

Oftentimes, we deal with issues that are relatively uncontroversial, on which we agree. All of us in the House are generally united, if not on means, certainly on where we want to go, which is to make life better for Canadians within our constituencies and across the country. It is nice when we can unite around certain common objectives that are important and that are transparently in the best interests of the country.

To say that this bill is not controversial does not mean it is not important. Even before we pass the bill, the fact of debating of it and putting some of the conversation around the issues of sickle disease onto the record is going to have a positive impact in awareness. I want to congratulate the member for Dartmouth—Cole Harbour on bringing it forward. This bill was originally brought forward in the Senate. I want to recognize the good work done by the senators. I had a chance to review some of the debate that took place there as well.

Why is this important? Awareness in general is good, but awareness of sickle cell disorders is particularly important because we know there is often a lack of awareness out there, that someone may be suffering from a sickle cell disorder and not be aware it. They may seek help in responding to it, and not receive appropriate care because of that lack of awareness.

Identifying June 19 as awareness day helps to move us in the direction of more people being aware when they experience what may be symptoms and to ask their physicians if they are related to the sickle cell issue. It helps to ensure that health providers are more aware of this issue as well. It gives us the opportunity in the House to have the debate and raise awareness of this issue. It also creates a focal point on efforts throughout the country to raise awareness around this.

Some of my colleagues have mentioned that June 19 was not picked at random. This is an awareness recognized in different parts of the world, and it aligns us with those broader international efforts around sickle cell disease.

Various colleagues have talked about some of the medical background on this, but it is worth revisiting and underlining it.

Over 5,000 Canadians live with sickle cell disease in some form. Estimates are that about one out of every 2,500 children born in our country has some sort of this condition. I am told that in the United States sickle cell disease is the most common genetic disease, as far as that country goes.

There are three predominant forms of it in this part of the world: sickle cell anemia, which is the one people may have heard the most about; hemoglobin SC disease; and then hemoglobin sickle beta plus thalassemia.

Essentially what sickle cell disease involves is a deformity of a part of the red blood cells, which makes those red blood cells not last as long. Therefore, people with sickle cell disease often suffer from reduced red blood cell count and other things that are associated with that.

These different kinds of diseases can be associated with a lot of pain. The associated misdiagnosis of that pain can be an exacerbating problem for people who are experiencing this. In some cases, we know of instances where people have been seeking treatment for their pain and have been dismissed because the assumption is made that they are just seeking painkillers not related to pain but for inappropriate purposes. That is one thing that can happen to people legitimately seeking help for this. Another issue may be that people are simply being given painkillers that do not actually deal with the underlying problem they are facing.

These are some of the things we know have happened to Canadians who are experiencing this underlying problem, but there is not a sufficient awareness about where this is coming from.

It is really important that people who have one of these disorders know about it so that they can get the proper support. Although there currently is not a treatment, and I appreciate the comments made by various colleagues about the need for more research to be gathered, there are mechanisms for managing symptoms that exist, things like blood transfusions and various drugs.

These are challenges that are genetic. We know that some people are carriers and others have the disease. It is passed on genetically; it is not something that is contagious.

However, emerging research suggests that there is a positive impact associated with things like lifestyle and diet. Those things can have a positive impact on a patient's quality of life. While we are dealing with a problem that is genetic in its origin, it does not mean that lifestyle cannot have a positive impact for that person. A person's health status, generally, is the result of the interaction between their genetics and the environment that they are in, in the broad sense of it.

The other important aspect of awareness is that in children especially, but also adults, who are dealing with sickle cell disorders, it can influence their level of fatigue and their ability to concentrate. There can be a relationship between these challenges and memory lapses. Having that awareness helps a person navigate school or work environments. It helps with the awareness of those they are working with, perhaps a teacher, in the case of a student, in terms of helping accommodate the specific issues that a person has.

Having that awareness significantly helps with the accommodation and the ability to succeed and thrive in light of a challenge that a person faces.

This is why I think it is particularly important that, as we talk about awareness, we also move the discussion toward screening and how having newborns go through a screening process and being aware of a sickle cell disorder they may have and be able to plan and respond to it makes a very significant difference.

We know that in every state in the United States sickle cell screening occurs. In Canada, it is available in some places, but not everywhere. There is a good opportunity, I think, to discuss what the benefits of expanding screening would be.

We know, of course, as with any health service, there is a cost to it. However, when we look at the availability of specific health services, one of the metrics we can look at, although it is not the only one or the be-all end-all, is what are the dollars per life saved? In other words, with an investment in a particular kind of screening or treatment, what is the positive impact going to be, in terms of lives saved?

I have looked at some of the research on this, with respect to sickle cell screening. I think the evidence pretty clearly points to the fact that, on efficiency grounds, investments in this area really do pay quite substantial dividends, in terms of lives saved. There is a pretty direct relationship there and, in terms of a dollars-per-life-saved metric, the impact is pretty good. The benefits there are clear, from advanced screening.

Sometimes when we talk about health care, we are more likely to put the dollars into the sort of end-stage treatments as opposed to the things in advance, the preventative, the screening things, but often investments in preventative-type of health care can pay, actually, the most dividends. This is one of those examples.

Just to add to the context, in terms of awareness, many of my colleagues have already pointed out that there is a disproportionate impact of this within certain cultural communities. I know others have listed them and I am running out of time, so I will just say that there is a disproportionate impact. It is important, especially as our country becomes more diverse, that we not ignore those diseases that particularly impact certain communities that may include more newer Canadians.

Also, it is important to be aware that it is not just those communities that are affected, but that all different kinds of cultural communities can theoretically have sickle cell disorder.

That basically covers it. June 19 would be an important day for us to mark this, as we continue the efforts in this House and beyond to raise awareness about sickle cell disorder and to look for solutions to it.