Stem Cell Transplantation and the Canadian First Nations Community. Becky Luk (PTLS) Tanya Petraszko, MD

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1 Stem Cell Transplantation and the Canadian First Nations Community Becky Luk (PTLS) Tanya Petraszko, MD

2 Why is there a need for stem cells? Our Story Why are we engaging the First Nations, Metis and Inuit communities? What is Canadian Blood Services doing to bridge the gap? Lets explore how we can do this together 2

3 3 You could be the one match to help save a life.

4 Diseases treated with stem cell transplants Acute Myelogenous Leukemia Acute Lymphoblastic Leukemia Other Leukemia Chronic Myelogenous Leukemia Chronic Lymphocytic Leukemia Myelodysplasia Hodgkin's Lymphoma Non-Hodgkin's Lymphoma Multiple Myeloma Other Malignancy Severe Aplastic Anemia Fanconi's Anemia Hurler Syndrome Hunter Syndrome San Fillippo Wiskott Aldrich Syndrome Adrenoleukodystrophy Thalassemia Other Non-Malignant Disease Histiocytosis-X Gauchers Combined Immunodeficiency Promyelocytic Leukemia Purtilo Refractory Anemia Chronic Granulocytic Leukemia Myelofibrosis Waldenstrom's Macroglobulinemia Osteopetrosis Juvenile CML Myeloproliferative Disease Sickle Cell Anemia Proxysmal Nocturnal Hemoglobinuria Congenital Erythropoietic Porphyria Severe Combined Immunologic Disease Familial Erythrophagocytic Lymphohistiocytosis 4

5 What is a stem cell?

6

7 Stem Cell Transplant Destroy diseased cells Destroys all blood cells Destroys immune system Replace hematopoetic stem cells from another person Restores all blood cells Restores immune system Disease is gone (intent)

8

9 9 How are donors and patients matched?

10 10 How are stem cells collected?

11 Transplantation with Stem Cells Bone marrow Blood Umbilical cord

12 Why Unrelated Donors? HLA Typing: inherited genetic markers Only 25% of patients have a match in family 75% must search for an unrelated donor Gabe and his mom Jeanine Unrelated donors are often from the same ethnic group as the patient 12

13 Canadian Stem Cell Recipients Canadian Unrelated Transplants International Donor Canadian Donor /03 03/04 04/05 05/06 06/07 07/08 08/09 09/10 10/11 11/12 13

14

15 What this means for First Nations patients First Nations registrants are severely underrepresented on the Registry This means First Nations patients are going to have a more difficult time finding a matching donor More than half of Canadian patients are finding a match from an International donor First Nations patients have certain antigens only found in the First Nations population. Finding a matching donor from a country overseas is unlikely 15

16 Canadian Aboriginal Recipients Registry data ( ): 102 recipients identified as aboriginal 40 transplanted (39%) 2 full HLA match, rest various degrees of mismatch 7 from Canadian donors Median time to transplant 8.2 months Vs. 5.8 months for non-aboriginal recipients 50 searches cancelled Too sick, died, took too long etc 16

17

18 Canadian Blood Services National Health Care Delivery Service (founded 1998) 915,585 whole blood donations 55,244 38, ,959 ~ 732 ~ 4,500 ~ 19,600 > $990 million plasma donations platelet donations active donors healthcare facilities served employees volunteers annual budget 41 permanent collection sites; 20,000 collection clinics 12 manufacturing centres; 3 blood-testing centres

19 OneMatch working to improve searches for Aboriginal Patients Partnering with The Aboriginal Nurses Association of Canada (A.N.A.C.) in 2009 Assembly of First Nations (AFN) endorsed Resolution in July 2011, supporting the work of OneMatch & the A.N.A.C. 19

20 Optimal donors needed years of age Healthy Committed Ethnically diverse Special need for male donors Julian, Aboriginal Registrant 20

21 Registration is easy Register on-line to become a potential stem cell donor: Registration information received into database within 20 minutes. Buccal swab mailed to registrant next business day after initial contact. Complete and return to OneMatch 21

22 Spread the word Tell family, friends and colleagues how easy it is to save a life Organize a Swab Event in your community Become a OneMatch Ambassador Encourage youth engagement Erik Blaney OneMatch Program Advocate 22

23 But OneMatch has more to do

24 Need for Additional Stem Cells Access to International Network of stem cell registries: 19.8M potential adult donors from 66 registries in 48 countries; and, 543K public CBUs from 46 cord blood banks in 30 countries. source: BMDW, September 7,

25 Need for Additional Stem Cells However Fail to find matches for 50% of our Canadian recipients Even less for ethnically non dominant Canadians 25

26 Need for Additional Stem Cells US National Marrow Donor Program: AABB million donors on registry Adds 1 million per year to registry big Rate of 8/8 match (HLA A B C DRB1) Caucasian 80% Asian 30 40% South Central American Black 15% Due to under representation in donor pool AND increased diversity in the minority groups 26

27 Cords and Ethnic Diversity Higher likelihood of match as only 6/6 required HLA A B DR US NMDP data 150,000 CBU and add 25,000 per year Likelihood of 6/6 match European descent: 15% adult recipient, 35% child Likelihood of 4/6 match 75% in ALL adult populations Virtually all children in all ethnic groups 27

28 Need for a National Public Cord Blood Bank increasing majority of all unrelated paediatric stem cell transplants in Canada are with cord blood increase in the adoption of cord blood for adults (two cords used) 28

29 29 Canadian Patients Transplanted Using Cord Blood Stem Cells

30 Need for a National Public Cord Blood Bank Cord blood has distinct advantages over bone marrow or PBSCs: More lenient HLA matching requirements Units are available immediately Lower risk of graft-vs.-host disease (GvHD) Minimal risk to donor (mother and baby) 30

31 Need for a National Public Cord Blood Bank All cord blood units supplied by Canadian Blood Services for unrelated transplant are imported from international sources. The cost of importing cord blood units continues to increase $42,000 ea. 31

32 Need for a National Public Cord Blood Bank International banks cannot meet the needs of Canada s unique First Nations and Aboriginal populations Uncoordinated, multiple banks cannot meet the need for a HLA diverse inventory that is required for Canadian patients. 32

33

34 CBS OM National Cord Blood Bank

35 OneMatch Public Cord Blood Bank Model Canadian Blood Services OneMatch National Public Cord Blood Bank (inventory of 20,000 units within 8 years*) Searching, Matching OTTAWA Manufacturing Facility (April 2, 2013) EDMONTON Manufacturing Facility (2014) CBS Support HLA Testing Transmissible Disease Testing Marketing & Recruitment Canadian Transplant Programs OTTAWA Collection Hospital(s) (April 2, 2013) EDMONTON Collection Hospital(s) (2014) International Registries TORONTO Collection Hospital(s) (2014) VANCOUVER Collection Hospital(s) (2014) 35

36 Awareness & Recruitment 1. Tell people it is here 2. Cultural Awareness 3. Donor Recognition 36

37 37 Maternal Information Booklet

38 Cord Blood Collection Ex-utero: Fully supported by CBS OMPCBB designated staff In-utero(non-supported): Entire process completed by hospital staff. This model is intended for future remote sites e.g. northern Canada. 38

39 Chief Patrick James of the Mowachat First Nation, Gold River, B.C. Chief Patrick James' Call to Action 39

40 Thank you 40

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