Awareness 

We Can All Do Our Parts to Build Sickle Cell Awareness In Canada
To raise more awareness around sickle cell disease, SCDAC has designed awareness bracelets and hand fans. It is also encouraging you to join in and help raise the extremely needed awareness around the disease.

As a Patient

  • Educate yourself about sickle cell disease and its treatment
  • Connect with a hematologist for comprehensive treatment of sickle cell disease
  • Connect with your local sickle cell association
  • Join a sickle cell patient support group in your locality

As a Family Member or Friend

  • Understand that individuals and families with sickle cell need support
  • Stay in touch and offer help when possible
  • Offer child care and other support when possible
  • Donate blood

As a School

  • Use the Chart below and the support plan designed by SCDAC/AAFC
  • Hold awareness day possibly on June 19 or in September to educate teachers, staff and students
  • Have catch-up mechanism for students absent due to illness

As a health care provider

  • Educate yourself about sickle cell disease
  • Have brochures on sickle cell trait and disease in your office
  • Include sickle cell trait and disease in your patient history form
  • Refer individuals with sickle cell trait to a genetic counsellor
  • Become familiar with protocol for treating sickle cell crisis.

June 19
The Sickle Cell Disease Association of Canada (SCDAC) calls for the recognition of June 19th as the National Sickle Cell Day in Canada as stated in the private member’s Bill C-221 and Senate Bill S-211. This is in recognition of the World Health Organization (WHO) and the United Nations' declaration that June 19th be set aside as world sickle cell day (WSCD) to raise awareness about this public health concern.

Senator Cordy's WSCD Statement in the Senate- 2017

Advocacy 2016-Awareness Reception Book- September 29th 2016

SCDAC- Advocacy 2016- Speaking Note- September 29th 2016

SCDAC's WSCD Message-2016     

Senator Cordy's WSCD Message to the Senate-2016

Supporting Canadians with SCD

National Advocacy- Bill S-211

Bill S-211:
December 8th 2015:Introduction and First Reading in the Senate 
February 17th 2016:Second Reading in the Senate.

2nd Reading Note in the Senate: 2016_02_17 Bill S-211, An Act respecting a National Sickle Cell Awareness Day (2nd reading)

Ottawa - The Senate Committee on Social Affairs, Science and Technology heard from President Tunji-Ajayi and Senator Jane Cordy, sponsor of Bill S-211, An Act respecting National Sickle Cell Awareness Day<http://www.parl.gc.ca/LegisInfo/BillDetails.aspx?Mode=1&billId=8063449&Language=E>, in Ottawa on Thursday, October 6, 2016

Witness in the Senate October 6 2016

3rd Reading Note in the Senate- October 20 2016

Ist Reading Note in the House of Commons- October 21st, 2016

2nd Reading Note in the House of Commons- December 1st 2016

2nd Vote in the House of Commons- February 15th, 2017

Bill Before Standing Committee on Health- May 4th 2017

Article: Diversity in Health Care by Dr. Kirsty Duncan

WORLD SICKLE CELL DAY- SCREEN SAVER-2016

November 2016

Newborn Screening is expanded to operate seven days a week

"Babies born with rare and life-threatening genetic disorders will be identified sooner under new changes being made to Ontario’s newborn blood screening program.

Starting this month, Newborn Screening Ontario is expanding to operate seven days a week, with samples being picked up and tested on Saturdays and reviewed during weekends, in an effort to reduce delays introduced between birth and diagnosis"------ read more

What is Newborn Screening

Newborn screening is the process of testing newborns for treatable diseases and/ or disorders that are not usually apparent when a baby is born.

Process: Shortly after a baby is born, a heel prick is performed to allow health care providers to collect a small amount of blood on special filter paper. The sample is sent to a laboratory, where it is tested for a number of diseases and/or disorders.

Why screen for sickle cell disease (SCD)?

Since 1986, research evidence has been generated in support of the benefits of newborn screening for sickle cell disease. Early diagnosis accompanied by penicillin prophylaxis, appropriate vaccinations and parental education is effective in preventing early mortality and severe morbidity in children born with this life-threatening disease.

SCDAC will lend a helping hand

The methodology and technique for SCD testing is affordable, robust and can easily be integrated in an already existing newborn screening program. SCDAC has a medical advisory board (MAB) that would be willing to lend technical expertise to ministries interested in moving forward with including SCD in their panel of NBS tests.

What are you waiting for?

The province of residence should not determine the quality of health care received by Canadian babies. Unfortunately, only six provinces and two territories are currently screening newborns for SCD. We urge the provinces of Alberta; Manitoba; Newfoundland & Labrador; Saskatchewan; and the North West territory to strongly consider adding SCD disease to the panel of tests in their newborn screening program. It will save lives and improve the quality of life of affected children.

50 years of foot dragging on NBS---- read more

Join our campaign and contact your Health Minister in provinces not screening babies for SCD

Contact Your Health Minister

HONOURABLE SARAH HOFFMAN

Email:
health.minister@gov.ab.ca

Twitter:
@shoffmanAB

Address:
Minister of Health 
Office of the Minister
Health 
423 Legislature Building
10800 - 97 Avenue
Edmonton, AB
T5K 2B6

Phone:
780-427-3665 

Honorable Kelvin Goertzen

Email:
minhsal@leg.gov.mb.ca

Address:
302 Legislative Building
450 Broadway
Winnipeg, MB
R3C 0V8

Phone:
204-945-3731

Honourable Dr. John Haggie

Email:
hcsminister@gov.nl.ca

Address:
Department of Health and Community Services
P.O. Box 8700
1st Floor, West Block
Confederation Building
100 Prince Philip Drive
St. John's, NL A1B 4J6

Phone:
709-729–3124

Honourable Jim Reiter

Email:
he.minister@gov.sk.ca

Address:
Room 204, 
Legislative Building, 
2405 Legislative Drive, 
Regina, SK, Canada, 
S4S 0B3

Phone:
306-787-7345

HONOURABLE GLEN ABERNETHY

Email:
glen_abernethy@gov.nt.ca

Address:
P.O. Box 1320  
Yellowknife, NT
X1A 2L9

Phone:
867-767-9141 ext. 11135

 

Renewed Calls for Sask. Newborns to be screened
No National Standard for Newborn Screening in Canada

Safe and Secure Blood

HIV-O Blood Donor Deferral Issues.
Correspondence from Health Canada- June 11th 2013

Men Having Sex with Men (MSM) Blood Deferral Issues
MSM Letter of support

Advocacy 2013- Comments from the sickle cell community

Congratulations to all! What an inspiring demonstration of collective action and common purpose. The goal of excellent care for all patients in Canada with sickle cell disease has moved perceptibly closer through your efforts and dedication, and I am proud to have borne witness, even if there only in spirit on this occasion. I am copying my MP, Matthew Kellway, who has already demonstrated his concern and attention to this issue, and understands the need for Bill C-221. Matthew, thank-you for your support!
Jacob Pendergrast, MD, FRCPC.
Toronto General Hospital
Way to go, congratulations and much success during the bill presentation to congress.
Bisi
BRAVO !! This is exactly what we need to get results. Your strategy is/was an effective one used by many advocates for causes. We do not see many of our community members and leaders taking this course of action and I salute you for raising awareness in this way.
My compliments to my friend and former colleague, Dr Kirsty Duncan for her support for the cause and for the motion she presented. Indeed, Canada can be counted among the many nations with a National Strategy.
My congratulations to President Lanre and SCDAC/AAFC. Thanks for your work.
Jean Augustine- Fairness Commissioner, Ontario
Great Work and Congrats!
Heather Gordon, Toronto General Hospital
Congratulations on a successful campaign on Parliament Hill!
Janice..

National Advocacy

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