12/08/2023
Sickle Cell Disease Association of Canada represented by Warrior Alvin Merchant was at the Canadian Blood Services Open Board Meeting on Dec. 7.
He shared our community's Need for Blood for Sickle Cell Disease treatment.
Here is the note:
Good morning/afternoon to the CBS board, distinguished members, and respected guests.
My name is Alvin Merchant and I come before you not only as a representative of the Sickle Cell Disease Association of Canada (SCDAC) but as a patient living with sickle cell disease for over 49 years.
This includes 3 (three) hip replacements, right shoulder replacement, liver failure, gall bladder removal and Acute Chest Syndrome, a more severe form of pneumonia, over 30 times and numerous blood transfusions. My life is woven with hospitalizations, near-death experiences, and an unwavering determination to break the silence surrounding this often-misunderstood condition.
While my journey may be specific to me, much of it, especially the healthcare systemic issues, are issues the majority of the community has and continues to deal with on a daily basis.
My focus today is on our vital need for blood – a lifeline for individuals like me. Blood transfusions play a pivotal role for many, including fellow Warriors like Ulysse Guerrier, Ismael Kando and Alex Morton in helping them manage their condition.
I come before you today to present our need for ensuring that the 6,000 Canadians living with Sickle Cell Disease have the option of blood that is compatible with their phenotype, by having the outdated and unscientific practice of malaria deferral removed from current CBS practices as requested by the Sickle Cell community and the Black Donors Coalition.
I want to draw your attention to the practices in countries like France and Australia, where individuals who have had malaria are still allowed to donate blood. This is a strategic and inclusive approach that recognizes the importance of increasing blood supply diversity while maintaining stringent safety standards. With the recent MSM and Mad Cow Disease criteria reversals along with the data shared Dr. Walrond, Dr. Dryden and more recently by Dr. Cenat in the last NRBDO meeting where representative from Canadian Blood Services were present, I urge the Canadian Blood Services to consider adopting similar measures, reevaluating policies such as the malaria deferral, and exploring alternative strategies to broaden the pool of potential donors for individuals living with sickle cell anemia.
That is the reason why we collaborated with Canadian Blood Services on the "Need for Blood" project led by Dr. Jennie Haw a CBS Scientist and SCDAC President Biba Tinga. This collaboration is a crucial step forward in addressing the challenges we face in securing compatible and phenotype blood. Together, we aim to ensure that the blood supply is not only sufficient but also diverse and representative of the varied genetic backgrounds of individuals with sickle cell anemia.
Most importantly we ask for the establishment of a national database of patient red blood antigen profiles. This crucial initiative will save lives by ensuring better cross-matching, reducing the risk of adverse reactions. This database is not just a collection of data; it is a lifeline for individuals like me, a step towards a future where we can receive blood that is not only safe but tailored to our unique genetic makeup.
This disease is a life altering/threatening condition that requires constant vigilance on the part of those living with it. It would be very tragic that even with a high level of vigilance on the part of patients like myself or our caregivers that an antiquated practice be the difference between life and death in a Warriors time of need.
Thank you for your time, your consideration, and your potential to make a profound impact on my life and the lives of thousands living with sickle cell disease here in Canada.
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Visit
The Black Donors Coalition website to see the open letter to Health Canada; CBS and Héma-Quebec:
Thank you for your correspondence of June 29, 2023 to the Minister of Health, the Minister of Mental Health and Addictions, and the Deputy Minister of Health Canada regarding concerns of anti-Black racism and anti-Black homophobia related to the Canadian blood donation system.
