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The South African Bone Marrow Registry
Successes and challenges: Overcoming Obstacles to Stem Cell Transplantation and delivering on a diverse stem cell registry in South Africa and Africa Dr Charlotte Ingram
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SABMR Team Terry Schlaphoff Deputy Director Nadia Chalkley Donor Recruitment Alicia Venter Search Coordinator Lisa Terblanche Search Assistant Jane Ward Harvest Coordinator Gill Bohlmann Accounts
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SABMR - Background Established in 1991 Non-profit Organisation
Board 11 Members 9 Non Exec 2 Exec Hub Centre for SA Liaison between 137 registries world-wide Provides MUDs for stem cell transplantation Facilitated 1st matched unrelated donor (MUD) bone marrow transplant in South Africa 1997 Donor recruitment Past = Sunflower Fund Present = SABMR
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SABMR - Activities Stem Cell Transplantation offered in 3 regions
Total number of SA patients transplanted – 497 Total number of SA donors donating stem cells – 162 - For SA patients – 130 - For international patients – 32 – include some siblings Stem Cell Transplantation offered in 3 regions Total number of SA patients transplanted – 492 (Total No facilitated 506) Total Number of Donors Donating Stem Cells – 156 For SA Patients 129 For international - 27
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SABMR - Successes Internationally recognised registry - approved member of the World Marrow Donor Association (WMDA) Guidelines for the collection and transfer of stem cells Submits donor data to the WMDA Search & Match Service (WSMS) database > 34 million donors and cord blood units Internet search engine Awarded full WMDA Accreditation Status June 2018 Achieved in Record Time of 2 years Started own donor recruitment in Nov 2017 WMDD Grand Prize 2018 - search engine to identify potential donors for a particular patient
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Donors for South African patients
Belgium 4 Germany 220 Netherlands 3 Austria 1 Norway 2 Poland 9 Spain 1 Switzerland 3 Denmark 1 Canada 4 Russia 1 USA 54 United Kingdom 38 France 14 Portugal 2 Taiwan 3 Italy 7 Brazil 3 Cyprus 2 India 1 Israel 7 Australia 4 Singapore 1 South Africa 130 Donors for South African patients
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3 Major Transplant Challenges
Committed Donor Time Access to Funds
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3 Major Transplant Challenges
Committed Donor
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3 Major Transplant Challenges
Committed Donor Planned donor recruitment vs patient specific donor drives - Aaron Lipschitz - Over 300 applications - Donor identified as match - Local Patient
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The Future Increase donors - Ethnic Diversity Overcome cultural issues
National footprint
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The STATS
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The STATS Match 1:100 000 More likely within own ethnic group 2018
229 Preliminary Search Requests 52% searches for Asian, Black and Coloured patients Only three out of the 40 transplants that year
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3 Major Transplant Challenges
Committed Donor Global WMDA STATS 2018 SABMR WMDA STATS 2018
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3 Major Transplant Challenges
Committed Donor
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3 Major Transplant Challenges
Committed Donor Since 2018 the SABMR recruits all of its own donors Current recruitment initiatives by online platform and donor drives Frequent contact with all registered donors Involve them in education and awareness campaigns No cost to donor when identified as match, we only ask their time 10 year medical follow-up post donation Possibility to meet their patient after 3 years with mutual consent SABMR strategic goal to increase size of database ~ tot by 2021
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3 Major Transplant Challenges
Time Prior to 2018: 6 to 8 months *depending on donor profile Preliminary Search request Limited patient HLA typing Full patient HLA typing Search Activation Extended HLA typing Round 1 Extended HLA typing Round 2 Extended HLA typing Round 3 Mandatory Verification HR Procurement Donor medical Stem cell harvest Transplant
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3 Major Transplant Challenges
Time Post 2018: 3 to 4 months *depending on donor profile Preliminary Search request Full patient HLA typing Search Activation Mandatory Verification HR Procurement Donor medical Stem cell harvest Transplant
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3 Major Transplant Challenges
Access to Funds Donor related costs: Local donor = R – R International donor = R – R Medical aid often only covers the cost of a SA donor SABMR Patient Assistance Program Financial assistance for South African citizens in need of a MUD SCT and who do not have the financial resources to formally activate their donor search. Launched in November 2018 – already funded 5 successful MUD SCTs Assisted with 2X international
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Registry Challenges Financial No state funding
Cost recovery for services not sufficient ∴ Sustainability Plan Cost of HLA typing HLA typing from buccal swabs performed in USA Poor ethnic diversity Recruited volunteers to help address the issue Alternative therapies CAR T-cell and Haploidentical transplantation Still require MUD BMT support Decline of donor database noted in 2016 SABMR started doing it’s own donor recruitment Implemented a new business model to enable rapid growth
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Where do we want to be? As per WHO
Haematopoietic Stem Cell Transplantation is: “A routine treatment without equivalent” that is ACCESSIBLE TO ALL IN NEED OF BMT!
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Transplant Programmes in SSA
South African Continuously expanding from 1 to 3 Paediatric Adult from 5 in 2016 to 12 in 2019 SABMR (45 MUD transplants/Yr) Nigeria 4 Transplants over 5-6 Yrs Ghana 5 Transplants – Sickle Cell only Kenya Mainly Sickle Cell - Family & Haploidentical referred to India or SA - cost related
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Stem Cell Registries in SSA
South African Bone Marrow Registry (SABMR) 73 154* Bone Marrow Registry Nigeria (BMRN) 924* The Sunflower Fund 1 039* Other - Ghana donor panel Above excludes EMR Countries- Middle East, North Africa, the Horn of Africa and Central Asia (21 Member States in Total) *WMDA: 6 August 2019
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BMT Options for African Patients
Many African patients in need of a BMT are currently being referred to transplants units in India and South Africa EMR/AFR High frequency Allogeneic compared to Autologous & almost exclusive use of family donors compared to Global EMR/AFR tend to use Haploidentical donors rather than cord blood
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Current Status of SABMR
SABMR Family Donor Assistance for Africa Kenya Somalia Ghana Nigeria Brother for US Patient – Sickle Cell Trait / AlphaThal
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How could we get there? Utilisation and expansion of existing services offered by partners Better access & more resources for patients in need of transplant Training and support programmes in the establishment of new BMT units Embrace new developments and treatments Education of Health Ministries
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Online Recruitment Portal
June 2018 – new website launched
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Making it all Worthwhile
Patients Taahirah Msomi pre & post AML 14-15 Hayleigh Stals pre & post Severe Aplastic ? Fanconi Zivi Nkatu pre & post MDS Dx 3months 18months
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“Dear anonymous, “ We know we don’t know who you are, but we know what you are – a hero. You gave our child another chance to lead a normal life. A chance to grow up, learn, play and experience everything this world has to offer. ……... Since the transplant almost a year ago, your bone marrow is now their bone marrow. Just know that you are now one with our child, always. A gift that keeps on giving. The world we currently live in is scary, but at the same time it’s beautiful, because there are people like you walking on it. We truly hope that one day we would be able to meet you and thank you in person. We want our child to meet you. We want them to meet the person who saved their life. We want them to know that there are good people on this Earth so that one day, they could be a hero for someone else. Again, thank you for everything you have done. Even though there are over 7 billion people on this Earth, it seems we are all closer than we think. “
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Thank you Donors!
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