Today, we’re continuing our interview with 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 focused on their desire to create a Sickle Cell Awareness Day, and part two focuses on how this moves through the political process and the impact they hope to have.
Why a day for awareness?
LTA: As you may be aware of, the Awareness Day Bill is the key and the foundation to improving the lot of many with SCD (to enact appropriate policies, laws and programs) as well as reduce the number of new SCD births. By supporting UN and WHO’s mandate in raising awareness of the disease on June 19th—we are exposing many more to the disease- general community (encouraging SCT testing); care providers (many Canadians doctors have limited knowledge of the disease and as such brand many patients seeking treatment for pain crises as drug seekers) and the law makers (to ensure we have laws and policies enacted that will support suitable care and treatment including research into SCD).
For the benefit of those readers who are not familiar with the Canadian Parliamentary process, can you let us know how a bill becomes law in Canada, and what it means that the National Sickle Cell Awareness Day Act is in its third reading?
SJC: In the Canadian Parliamentary process, a bill can originate in either house of parliament. A bill originating in the House of Commons begins with a ‘C’ (example: C-208) and a bill originating in the Senate begins with an ‘S’ such as S-211.
A bill will go through several stages before passing into law. It is first introduced, then debated for a first time at what is called ‘Second Reading’. After debate has concluded at Second Reading it then moves on to be studied by a committee. When a committee has finished study of the bill it is then reported back to the chamber at which point it will then be debated again at what is called ‘Third Reading’. Following third reading of the bill, there is a vote on the bill and if the bill passes, it will then move on to the other house of parliament where it will go through the same process again. Once a bill has passed both houses of parliament in the same form, it will then received ‘Royal Assent’ and become law.
This is a simplified explanation of how a bill becomes law. There are many things that can happen to a bill throughout the parliamentary process, such as amendments, which I didn’t get into here but if your readers would like to know a bit more about how a bill becomes a law I have included a handy link.
As for our National Sickle Cell Awareness Day Bill (Bill S-211), it has passed unanimously all the stages in the Senate without amendments. It has also passed unanimously second reading and committee study in the House of Commons. Currently, the bill is scheduled to continue its third reading in September. If the House of Commons votes to accept the bill without amendments, after third reading concludes, the bill will receive royal assent and become law.
What is your hope for the Act?
SJC: Sickle cell disease is the most common genetic disease in the world. It is important that we have discussions about sickle cell disease so that Canadians and the medical community are more aware of sickle cell.
In order for a child to be born with sickle cell, both parents must have the sickle cell trait. The concern is that many people who carry the trait are not aware that they are carriers. We need more genetic testing so that adults can make informed choices if they know that they and their partner are both carriers of the trait.
We also need new born screening which is a simple blood test so that if a child is born with sickle cell disease treatment can begin immediately. Too many children are not diagnosed and this creates challenges when they go to emergency departments because of severe pain and are given Tylenol and sent home. Knowledge creates better opportunities for families and medical personnel to provide early interventions and treatment.
I am hopeful that the passing of this bill will increase the awareness of sickle cell disease and will encourage the Federal Government to support further research for a better understanding of the disease, which treatments work best and hopefully, one day, to find a cure.
I would also advocate a national strategy for sickle cell disease which can happen after research.
LTA: As mentioned above, the bill is a catalyst that will open the door to a national strategy for SCD-National Strategy. A national strategy will reduce the health care cost associated with sickle cell disease and improve the quality of care received by the approximately 5 000 individuals living with the disease in Canada. As such, our Medical Advisory Board is willing to lend technical expertise to the federal, provincial and the territorial ministries of health in moving forward with the planning and implementation of a national strategy and has provided an extensive report on the need for this strategy based on SCDAC/AAFC’s three “Asks” identified in this document.
SCDAC/AAFC is seeking federal leadership and funding in cooperation with the provinces and territories for the three key asks to bring about:
- Implementation of universal newborn screening program for haemoglobin disorder in all provinces and territories
- Establishment of a Canadian network of Comprehensive treatment centres, and
- Creation of a national patient registry.
Given that Senators operate at a Federal level, is there a partnership/plan to engage provincial partners to help promote this day to ensure that more people are aware of this?
SJC: Of course it is extremely important that there is a partnership between the Federal Government and the Provinces/Territories to create awareness of Sickle Cell Disease across the country. Six provinces and one territory currently provide newborn screening to detect Sickle Cell. I am pleased that my province of Nova Scotia is among them. This information is invaluable if we are to make a difference. If Bill S-211 passes I will be contacting the Provincial Health Ministers to encourage them to promote Sickle Cell Awareness Day. We have been pleased with the support Bill S-211 has received in the Senate and in the House of Commons.
LTA: Yes, Nova Scotia for instance has declared June 19 as World SCD. We believe that once the Bill passes more provinces will follow suit. Never the less, once it is law at the Federal level, we believe it will be law in every province. With our member organizations in almost all provinces, we will be able to progressively engage the provincial partners