Today, we’re welcoming Senator Jane Cordy, a Senator from Dartmouth, Nova Scotia and Mrs. Lanre Tunji-Ajayi, President & Executive Director of the Sickle Cell Disease Association of Canada to the blog to discuss their initiative to make June 19th official Sickle Cell Awareness Day in Canada. Part one of the interview focuses on their desire to create a Sickle Cell Awareness Day, and part two will focus on how this moves through the political process and the impact they hope to have.
Hi and welcome to the blog. Could you let the readers know a little about yourselves?
Senator Jane Cordy: Hello, my name is Jane Cordy, I am a Senator from Dartmouth, Nova Scotia, Canada. I am a former elementary school teacher. I was named to the Senate of Canada by former Prime Minister, The Right Honourable Jean Chrétien in June of 2000. I sit in the Senate as a member of the Independent Senate Liberal caucus. Since joining the senate I have had a focus on issues related to mental health, multiple sclerosis, sickle cell disease, seniors and aging, education and children.
Mrs. Lanre Tunji-Ajayi: Born as the eldest child in a family with sickle cell disease (SCD), I became an advocate and caregiver for my siblings at a tender age- I remembered dressing my brother warmly so as not to catch cold when I could not have been more than 7 years old and he was about 5 years old.
Watching my parents doted on my siblings with SCD, I quickly learnt the reasons for their actions and followed their footsteps in reducing environment induced pain crises for my siblings—especially my brother who was the closest in age to me. I would ask about his protein intake and demand that he ate beans three times a week. He must also take the bus from school rather than walk home—you must avoid stress and its resulting pain crises, I found myself advising quite often.
It was not until 5 years after my brother Sunday Afolabi succumbed to the complications of SCD in 1999 that I decided to do something about the disease especially within the At-Risk communities in Canada. In 2005, armed with the conviction that raising awareness around testing for sickle cell carrier status is the place to start if we must reduce the number of unplanned for SCD births; the Sickle Cell Awareness Group of Ontario was incorporated. In 2012, along with other national advocates from across the country, we established the Sickle Cell Disease Association of Canada. With about 28 years of experience in Management, I am pleased to continue to support both the Ontario and the national associations in various capacities.
What is Sickle Cell Anemia?
LTA: Sickle Cell Disease (also called Sickle Cell Anemia) is a group of inherited red blood cell disorders affecting production of hemoglobin. The genes producing abnormal hemoglobin are inherited from parents, who may be ‘carriers’ of the sickle cell gene or ‘trait’ or may have sickle cell disease themselves.
Hemoglobin is the part of the red blood cell that carries oxygen around the body and keeps vital organs working. In Sickle Cell Disease, the abnormal Hemoglobin (HbS) is not able to work properly, and it gets destroyed quickly, leading to anemia. The red blood cells also becomes stiff and block up the blood vessels in the body, causing pain and damage
Canadians affected are mostly those whose ancestors are from sub-Saharan Africa and the Maghrib, Asia (including the Middle-East, Arab Peninsula, India), the Americas and Southern Europe (including southern Italy and Sicily, Greece, Turkey). With Canada being multicultural and very diverse, these ethnicities represent today’s Canadians. Furthermore, with the increasing cross-procreation among the different ethnic groups in Canada, it suffices to say that SCD is not confined to some selected ethnic groups but will, can and is affecting all Canadians.
Currently there is no patient registry for SCD and as such the true epidemiology including true burden of the disease is unknown, however, our estimates of the affected is about 5000 Canadians and over 100-120 children born with the condition annually. There will continue to be further increase in the number of the affected and new births due to the current international and cross- provincial migration patterns. We have immigrants from all over the world and it is important to support the health issues of the new comers to our country. SCDAC has developed both at the national and provincial levels, SCD strategies that will reduce health care costs related to SCD while ensuring optimal contributions of the affected to our economy. It is also high time we treat testing for sickle cell trait (SCT) as a public health issue especially with SCT being asymptomatic and the number of affected within some ethnic communities as high as 25%
According to the World Health Organization (WHO) estimates, sickle-cell anemia affects nearly 100 million people throughout the world, with over 300 000 children born every year with the condition. Tragically, the majority of these individuals will die in childhood due to lack of basic care, and those who survive into adulthood are too often face a life of chronic disability and premature death unless disease-modifying therapy can be provided. The WHO therefore urges countries affected by SCD to establish health programs at the national level and promote access to medical services for people affected by the disease. We are witnessing a continued increase in the number of the affected yearly and Canada must shift its focus to SCD.
How did you both meet and why did you decide to pursue the National Sickle Cell Awareness Day Act?
SJC: My journey with sickle cell disease began about two and a half years ago when MP and now Minister Dr. Kirsty Duncan hosted a breakfast on Parliament Hill to introduce senators and MPs to sickle cell. At that meeting I met courageous, wonderful people who came to Ottawa to tell their stories about sickle cell and how it affected them and their loved ones. I also met doctors who spoke about the need for the early diagnosis and treatment of sickle cell disease.
Lanre was also at that meeting. Afterwards I spoke with her and told her that I would be willing to help out. Fortunately, Lanre accepted my offer and this led me to introduced Bill S-211, an act that would establish June 19th as National Sickle Cell Awareness Day in Canada.
I am honoured to work with Lanre and the other wonderful advocates like her who are passionate about improving the lives of Canadians who have sickle cell disease.
LTA: I met Senator Cordy in 2013 at the breakfast event supported by the Minister Kirsty Duncan as a part of the SCDAC’s advocacy and education day on the Parliament Hill. It was the first time that sickle cell disease education and advocacy day would be held on the Hill and it provided the delegates the opportunity to provide the necessary awareness and education to the law makers. The delegates’ meetings with the MPs and Senators after the breakfast event helped to expose the limited SCD knowledge on the Hill. Quickly we realized that with the limited knowledge of the disease on the Hill, asking for their support may not be realistic.
Two years after (2015), and with the help of Minister Duncan, we asked Senator Cordy to introduce a Senate Bill for National Awareness Day in Canada. We believe that policy makers must have a good knowledge of the disease including the challenges and complications imposed by SCD to the patients and their care givers; and the economic and financial impacts on patients, caregivers and our health system if there must be policies to advance SCD Education, Research, Care and Treatments.