Madam Speaker, as the health critic for the New Democratic Party, and on behalf of my colleagues in the NDP caucus, I am proud to stand today and express our support for the bill as well. It would declare a special day to commemorate national sickle cell awareness day and to bring attention to this very important condition.
Sickle cell disorder is the most common genetic disease in the world. The WHO estimates that sickle cell anemia affects nearly 100 million people on the globe. Canada's first recorded case was published in 1966. In 2016, some 50 years later, it was estimated that between 5,000 and 7,000 Canadians live with sickle cell disorder.
In 1978, it was discovered that the gene responsible for hemoglobin is on chromosome 11. A prenatal genetic test for sickle cell disease was developed in 1980. To be affected, an individual has to receive the defective gene from both parents. If only one parent passes on the defective gene, that individual will be a carrier but not affected. If both parents are carriers, there is a one in four chance that the child will be affected by this disorder.
Fortunately, sickle cell anemia can be detected before birth, and couples who are both carriers may wish to consider prenatal testing for the condition. Sickle cell disease is more common among those whose ancestors come from certain parts of the world, including India, the Middle East, and from sub-Saharan African, Caribbean, and Mediterranean countries. However, it is very important to note that, contrary to some common misunderstandings, sickle cell disease has no colour, because it also affects Caucasians from Europe and elsewhere. Getting all Canadians tested would be the best way to move forward.
Sickle cell disease is characterized by a mutation in the shape of the red blood cell, from a smooth circular shape to a crescent shape, which can result in the blockage of small blood vessels and the impairment of blood flow. This leads to a reduction in red blood cell survival and subsequent anemia. A sickle-shaped cell has a lifespan of only about 20 days, unlike a healthy cell with a lifespan of 120 days.
The problem of clogged blood cells and low blood count hampers the body's ability to bring oxygen to the organs. This starvation of oxygen most commonly manifests itself as severe pain in the bones and can damage shoulder and hip joints in particular, or cause chest pain. There can also be damage to the lungs, heart, liver, kidneys, and eyes.
The poor blood oxygen levels and blood vessel blockages that result from sickle cell disease can then lead to severe chronic pain, serious bacterial infections, and tissue death. The symptoms of sickle cell anemia can vary widely in number and severity. However, the most common symptoms are related to anemia and pain. Other symptoms are related to complications from those.
During painful crises, medications can reduce pain and help avoid complications, and extra fluids can prevent dehydration. Oxygen can be provided if there is not enough in the bloodstream. When anemia is severe, blood transfusions may be used to treat and prevent complications, and antibiotics are frequently administered when there are consecutive infections.
The lifespan of persons with severe sickle cell disease can be reduced by as much as 30 years. Currently, there is no cure. At this time, the only treatment options are to relieve symptoms by treating vaso-occlusive crises, preventing triggers, and administering blood transfusions to prevent anemia, and exchange transfusions to reduce hemoglobin S in the blood. Gene therapy is also being studied and holds some promise.
Many people with this condition are in reasonably good health and can live productive lives into their fifties and longer. Some people, however, develop severe symptoms and complications and require frequent hospitalization. The broad range of sickle cell disease symptoms may cause health care professionals to misdiagnose the condition.
In Canada, six provinces and two territories provide prenatal screening right now: Quebec, Ontario, B.C., Yukon, Nova Scotia, New Brunswick, P.E.I., and Nunavut. Currently, Alberta, Saskatchewan, and Manitoba are considering prenatal screening.
While recognition of June 19 of each year as national sickle cell awareness day is important in order to promote awareness among Canadians of the disease, and the bill is a good start, it is not enough. We need more.
Since this disease can place a substantial burden on family members, better support is needed for caregivers, particularly the parents of children with the disease. Support for access to screening of newborns and the genetic screening of adults at risk who wish to have children and improvements for diagnosis and treatment are long overdue.
Special awareness and communication plans for ethnic groups at risk are also important. Canada is, of course, one of the most diverse countries in the world. Many Canadians trace their roots to the Caribbean, sub-Saharan Africa, India, the Middle East, and the Mediterranean, which are regions where, as I have already pointed out, the SCD gene is more common.
We also need international co-operation and assistance to respond to requests from the WHO in a resolution adopted by the assembly in 2006 to help the most vulnerable groups identify and treat individuals with sickle cell disease. I think this is where all parliamentarians ought to be directing our attention after, hopefully, every parliamentarian votes in favour of the bill. It is not enough just to commemorate and recognize a disease. What is important in terms of government policy and what Canadians, whether they are at risk for SCD or not, expect from the government is action. We need to start seeing some meaningful resources devoted not only to SCD but also to other genetic conditions. I think that Canadians want Parliament to do everything it can to increase spending in research and treatment, so that we make the scientific and medical breakthroughs and inroads that are needed in order to find a cure for this condition and others like it.
I think health professionals need a special shout-out in terms of any bill before the House that deals with the health care field. Health care professionals are on the front lines of this disease and all others. We have to recognize the work that they do in what most Canadians would feel is the most important aspect of their lives, which is their health.
I know that many health care professionals, because of the relative rarity of this condition, are unaware of this disease, especially because of its uneven prevalence across the country, particularly in rural areas. Therefore, health care professionals need to be better informed about the prevalence of at-risk populations and the risk of misdiagnosis. We have heard other speakers in the House talk about the fact that people can present at hospital or emergency rooms with indicia that do not necessarily present as sickle cell disease, and in fact are often misdiagnosed, sometimes in a very stigmatized fashion.
Testing and treatment, and I will deal with testing first, should be available across Canada. In particular, we must not forget the rural and remote areas of this country, which are often left out of the equation. Treatment protocols and pain reduction strategies should be shared, since early treatment cuts the cost of care and sets out what steps to take.
I will focus a little on the international situation here, because I think most Canadians want Canada to play a responsible role on the world stage, take our place in proper form, and meet our responsibilities, particularly when it comes to health, and particularly when it comes to diseases, like sickle cell, which know no borders.
As I mentioned already, in 2006, the World Health Organization, of which Canada is a member state, adopted a resolution urging support for SCD research. Ten years later, I think it does no violence to any party in the House to point out that we have not made any progress in that regard. The resolution at that time stressed the urgent need for member states to:
design, implement and reinforce in a systematic, equitable and effective manner, comprehensive national, integrated programmes for the prevention and management of sickle-cell anaemia.
Again, I congratulate my hon. colleague on moving this important bill forward. I think it is going to get all-party support to recognize this important day, but let us not leave it there. Let us heed the WHO. Let us do what we can in this Parliament to at least make a good start on fulfilling those obligations that the WHO called for and which Canada agreed to at the time.