SOUTH AFRICAN BONE MARROW REGISTRY AR 2018/19

Page 1

THE 2018/19 ANNUAL REPORT OF THE SOUTH AFRICAN BONE MARROW REGISTRY


I

t is often said that life can only be understood backwards, but it must be lived forwards and looking back on the period 2018, our third full year at the South African Bone Marrow Registry (SABMR), it brings us great honour to see how far the SABMR has come and to see the direction in which we are heading. The year 2018 was one filled with a great deal of achievement that would not have been possible without the SABMR Board and Staff. Their support, guidance, commitment to quality and the teamwork towards reaching our goals were a key factor in the success of the SABMR, and we thank each and every one for taking up their roles with pride and excelling in their respective fields. At the 12th International Donor Registry Conference (IDRC) and WMDA Working Group Meetings, the SABMR received its WMDA Accreditation Certificate. This is not just a big step for us, but for many patients and donors living in Africa today. The WMDA Accreditation assists the SABMR on its path to continue providing a high-quality, safe product and bone marrow stem cell service for South African and other registries worldwide, benchmarking at an international level. The signature global event, World Marrow Donor Day (WMDD), was another feather in the SABMR’s 2018 cap. The variety of events which took place around the month of WMDD, including lighting Groote Schuur Hospital up in the SABMR turquoise, awarded the SABMR the great honour to

win the WMDD grand prize for registry of the year. Looking back and looking forward our goal to raise the number of donors on the Registry from 73 000 to 100 000 is still something we are working towards. Going digital in 2018 with a new online recruitment platform as well as the new proprietary software program to manage new donor applicants being recruited using buccal swabs, played a pivotal role in expanding the Registry. The very high genetic diversity in South Africa makes it difficult to source a donor from some of the less diverse registries, hence making it important for South Africa to increase our own donor base and to make it more representative of the South African population by increasing the number of black donors. With the continued support of our key stakeholders, leaders in government and professional associates, as well as the SABMR staff members, the road to 100 000 is within reach. Finally, a heartfelt thank you goes out to all our donors – those who have registered to become a bone marrow donor as well as those who have made a financial contribution – with your support and ongoing commitment you are actively making a choice to ‘be someone’s tomorrow’; you equip us to expand the Registry and to save lives. Thank you.

DR CHARLOTTE INGRAM Medical Director & CEO DEREK AURET Chairman, SABMR Board

SENIOR EDITOR

CONTRIBUTORS

EDITOR

Dr Charlotte Ingram •

Veronica Borrill, Clarice Cairncross, Nadia Chalkley,Catriona Ross Terry Schlaphoff, Kamiel Singh, Marlene Stals, Alicia Venter, Jane Ward

Anje Rautenbach, Digital Shelf

EDITOR-IN-CHIEF

Terry Schlaphoff

• MANAGING CREATIVE DIRECTOR & ADDITIONAL PHOTOGRAPHY

Johann M Smith, Digital Shelf


CONTENT S

OF THE ANNUAL REPORT OF THE SOUTH AFRICAN BONE MARROW REGISTRY 2018/19

4 FROM OUR PATIENTS AND DONORS PLUS TEAM ANSWERS 2018 HIT MOMENTS

15-18 STORIES HAYLEIGH STALS • SIBONGILE JIMLONGO • JOHAN WEYERS & BARRY VAN DER MERWE

19 MEANINGFUL ENGAGEMENT WITH STAKEHOLDERS MEE T OU R N E W DO NOR RECRU ITMEN T O FFICER NADIA CHALKLEY

20 CREATING SUSTAINABLE WAVES OF CHANGE MEE T OU R N E W SUSTAI N ABI LIT Y P O RT FO L IO M AN AGER KAMIEL SINGH

21-23 GLOBAL MEETINGS N E T WO RKI NG FO R A BE T TER TOMO RROW

24 SABMR GOES DIGITAL FO RWARD -T H I N KI NG IS T H E FI RST ST EP

06 “AS A REGISTERED DONOR, IT WOULD BE AN HONOUR FOR ME TO HAVE EVEN THE CHANCE TO SAVE SOMEONE’S LIFE” ZOLANI MAHOLA

WALKING FOR LIFE ONE MAN’S 825 KM JOURNE Y

07 SABMR’S FIRST GOLF DAY ON PAR WITH THE STARS

08 SABMR GETS FULL ACCREDITATION WITHIN RECORD TIME

09 WORLD MARROW DONOR DAY WE WON THE GR AND PRIZE

10-13 ALL THE FACTS & FIGURES


FROM OUR PATIENTS AND DONORS LETTER FROM THE PARENTS OF A BONE MARROW RECIPIENT TO A DONOR

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 around us. 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 has 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.

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

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.

“Our son was my husband’s donor because we also couldn’t find a donor on the registry. He was only a 50% match but so far so good. My daughter says that all she wants for her 18th birthday is to join the registry.” - Magdalie Grobler

MESSAGES SENT BY YOU ON SOCIAL MEDIA

“I can’t wait to be someone’s tomorrow.” - Tina Van Heerden

“I will be forever grateful to my donor.” - Kerry-Leigh Abrahams

“I was a stem cell recipient from an unrelated donor in 2013. You won’t believe how much I wanted to contact and thank my donor for saving my life. It is a life-saving event.” - Richard Jupin

“I registered about 17 years ago and got phone call on Monday about being a possible match. Went for blood samples yesterday. Fingers crossed.” - Made Lein

OUR TEAM ANSWERS

WHAT WAS YOUR 2018 HIT MOMENT? “When the SABMR was awarded the World Marrow Donor Day grand prize!” Alicia Venter, Search Coordinator

“The hit moment in 2018 has to be the HBDI colour assessment of personalities merging us into a beautiful rainbow of understanding and cooperation.”

“Seeing Groote Schuur Hospital light up with the SABMR colours for the first time.” Ilhaam Noordien, Office Administrator

Zaahier Isaacs, Technical Assistant

“Being nominated as one of the WMDD finalists and winning! Receiving WMDA accreditation.”

“Receiving WMDA accreditation — a dream became a reality and winning the grand prize for WMDD.”

Jane Ward, Harvest Coordinator

Terry Schlaphoff, Deputy Director

“The SABMR celebrating Women’s Day at work for the first time and seeing the joy and surprise on everyone’s faces!” Nicolette Hendricks, Secretarial Assistant

04

“The opportunity to enrol in the WMDA Search Coordinator Certificate Programme.” Lisa Terblanche, Search Assistant

“Joining this amazing team at the SABMR, to create a difference in the world.” “Starting as a Donor Welfare Officer at the SABMR and attending my first stem cell harvest.”

Kamiel Singh, Manager Sustainability Portfolio

Clarice Cairncross, Donor Welfare Officer

“For me it was unquestionably achieving our WMDA accreditation!” Veronica Borrill, Board Secretary

“The completion of our Donor Recruitment Management System which now allows the SABMR to handle greater volumes of applications.”

“Being part of the SABMR donor drives; being in the field looking for that someone who could change someone’s tomorrow.”

Nadia Chalkley, Donor Recruitment Officer

Siphokazi Dyasi, Donor Recruitment Support Officer

“The launch of the SABMR Donor Recruitment Centre.” Gill Bohlmann, Accounts Administrator


ANNUA L R EPORT

2018/19

All the highlights, activities, innovations, achievements and progress.

05


WALKING for life

One man’s journey of 825 km on foot for the next child patient in need.

H

ow far would you walk to save a child’s life? The best possible answer anyone of us can give is, as far as humanly possible.

Darren Combrink, a 40-something digital media producer from Cape Town, put the question to the test when he set off on foot on an 825 km journey through Spain. The facts and reality of children suffering with blood-related diseases shouted his selfless act and goal into existence; he couldn’t ignore that one out of every 600 South African children under the age of 16 gets diagnosed with cancer. Neither could he ignore the chances of finding an unrelated donor is one out of 100 000. Combrink was acutely aware that while the South African Bone Marrow Registry provides a free preliminary search for donors, only 19 out of the 79 patients referred to the SABMR in 2017 had adequate funds for a donor search. Something had to be done.

06

Armed with a GoPro, social media and a desire to raise awareness and funds for the next child patient in need of bone marrow, Combrink walked the gruelling distance of the Camino Del Norte under the hashtag #WalkingForLife in proud support of the SABMR. This particular route, stretching between Irún and Santiago de Compostela, has been dubbed by pilgrims as one of the toughest.

“WE CAN TAKE THE RIGHT STEPS TO SAVE LIVES” He put one foot in front of the other, faced the ups and downs, and got a glimpse into the lives of child patients, and what they – alongside their family members – endure each day. Combrink said, “Through working, talking and walking together, we can take the right steps.”

And that happened. With the combined support of the SABMR and the Confraternity of Saint James of South Africa (CSJofSA), more than R35 000 was raised through a crowdfunding campaign thanks to generous donors from all over the world. Medical Director, Dr Charlotte Ingram, responded to the good news and said, “We are most grateful to anybody who supports the SABMR, supports the children in need and assists us in being able to do what we want to do and help others.” But Combrink’s journey did not end at 825 km, he continued to walk for another 105 km to what is known as ‘The End of the World’, in Muxía in Spain. And even months after he finished the 930 km walk, Combrink still reflects on the Walking for Life journey with the words of Ronald Reagan close to his heart, “We can’t help everyone, but everyone can help someone.”


SABMR’S FIRST

Golf Day

T

Golfing for someone’s tomorrow. he South African Bone Marrow Registry hosted its first ever Golf Day at the premier Westlake Golf Course, Lakeside, Cape Town.

With looming clouds bringing the promise of rain over the Mother City, the golfers took a swing alongside corporates and local celebrities to assist the SABMR with the promise to “be someone’s tomorrow”. And come rain or shine, duff shots or holes-in-one, the event which started with canapes and champagne, hit a sweet spot with all who participated and contributed. Zolani Mahola, solo artist and lead singer of the South African band Freshly Ground, continued to show her support to the SABMR and traded her microphone for a golf club. Other South African legends who joined in on the fun and raised awareness included international cricketer, Jean-Paul Duminy, more commonly known as JP Duminy, actor and producer Frank

Rautenbach and former patients and bone marrow recipients, Jonathan Sendzul and Craig Banks. And the golf course was anything but ordinary, it was an extravaganza of exciting activations at the main holes which included delicious treats and rewards by Darling Brew, the Hussar Grill and Panarottis. Before the casual dinner, Rautenbach led the auction to raise funds for the South African Bone

“I had tons of fun at the golf day; it was well-organised and the representatives from the SABMR were incredibly kind and passionate about what they do. I feel humbled and it was a privilege to be able to contribute to such a worthy cause and event,” says Frank Rautenbach. Sadly, there are patients who lack the financial resources to cover the donor-related costs of a bone marrow transplant and the funds raised during the auction through ball sales, the auction and pledges, tallied up to over R100 000, in support of the SABMR’s Patient Assistance Programme.

Marrow Registry and items such as awardwinning local spirits and wine, golfing gear, getaways to luxurious accommodation establishments in Cape Town and more formed part of the prizes.

The South African Bone Marrow Registry is forever grateful to the key line sponsors who, together with all who participated, made the day a great success.

07


SABMR GETS FULL WMDA Accreditation

F

The SABMR is the first stem-cell registry worldwide to be granted full WMDA accreditation within two years.

ollowing our World Marrow Donor Association (WMDA) qualification, the SABMR was granted full WMDA accreditation in June 2018 at the WMDA Working Group Meetings and International Donor Registry. The meeting was hosted by the German National Bone Marrow Donor Registry (ZKRD) in Munich and characterised by great interaction, science and a marvellous social program including the opportunity of seeing, possibly for the first time in the history of the organisation, the President of the WMDA in Lederhosen. Besides being the only accredited stem-cell registry in Africa, the SABMR is now the first stem-cell registry worldwide to be granted full accreditation within two years, the minimum timeline prescribed for the process by the WMDA. “It was very much a team effort, but largely driven by Terry Schlaphoff, our Deputy Director, and Veronica Borrill, former International Search and Harvest Coordinator,” says Dr Ingram. The WMDA accreditation process has two stages: qualification followed by accreditation. All registries must first achieve qualification which is a paper-based exercise. Full accreditation

8

involves an on-site visit by WMDA trained reviewers. Every document and process are up for scrutiny and key staff are interviewed at their workstations by the inspectors. One of the key elements was adding a dedicated Quality Manager to the SABMR team. It was also the driving force to implement risk management processes. The final audit, which led to full accreditation, included an onsite visit by reviewers of the WMDA Accreditation Program. Accreditation is part of an ongoing programme: the SABMR will be re-evaluated in two years’ time, with an onsite inspection two years after that. Lydia Foeken, Executive Director of the WMDA, said, “Obtaining accreditation is hard work and the process can take several years. It’s very impressive that the SABMR managed to get accredited within the minimum period of two years. This indicates their dedication and determination to show the world they are a true example of excellent care.” The value accreditation brings is twofold. Firstly, to the donors we recruit and the patients we serve is the assurance that the SABMR has demonstrated appropriate procedures are in place to ensure the safety of the donors and the patients we serve. It also informs other registries

within the WMDA that we have the skills and resources to work efficiently with them. “This is an international standard of care that all stem-cell registries worldwide strive to attain,” says Dr Charlotte Ingram, Medical Director of the SABMR. The enhanced processes of being an accredited organisation, ensure that the commitment to quality is embedded in all our processes. It also provides assurances to external partners and enhances the ability to raise funds for our projects to develop the database and assist patients in need. Upon hearing the news that the SABMR has officially received its accreditation, Deputy Director, Terry Schlaphoff, says, “Words are inadequate to describe what was the fulfilment of a long-held dream for my long-time colleague, Veronica Borrill and myself.” Based in Leiden, the Netherlands, the World Marrow Donor Association (WMDA) is made up of organisations and individuals who promote global collaboration and best practices for the benefit of stem-cell donors and transplant patients. The next International Donor Registry will be hosted by Hema-Quebec Stem Cell Donor Registry in 2020.


WORLD MARROW DONOR DAY The SABMR walks away with the grand prize.

T

he signature World Marrow Donor Association global event, World Marrow Donor Day, is held on the third Saturday every September and it is a celebration to thank all donors worldwide: unrelated donors, family donors, cord blood donors, donors who already have donated, and donors who are on the global registry waiting to donate. The secondary objective is to raise awareness among the general public and decision-makers about being a stem cell donor and the impact of blood stem cell transplantation on patients’ lives. For many children and adults in need of a transplant we are unable to find a match within the global registry with millions of donors and therefore, more potential volunteer donors need to be recruited. This is especially true for mixed race patients or those from ethnic minorities. World Marrow Donor Day is about compassion, celebration, cooperation and community and the 2018 event was celebrated on the 15th of September. Around 325 events were organised around the

MEET

MONEEB WAGGIE Moneeb Waggie joined the South African Bone Marrow Registry team as our Quality Manager in

world and it was fully embraced by The South African Bone Marrow Registry.

the WMDD and the SABMR signature turquoise ribbons.

The SABMR marked the occasion with multiple campaigns with Groote Schuur Hospital, our ‘home’, being lit up in turquoise, our brand colour, for the two weeks surrounding World Marrow Donor Day. And besides media coverage, our 1 in 100 000 campaign, a dedicated website page and a microsite, we organised a festive ‘cake-off’ with Groote Schuur Hospital staff, and a PSI Global Challenge with PSI CRO (Centurion), to encourage their staff to register as donors.

It was a very special moment to learn that the SABMR was selected as one of the runners-up for the WMDD grand prize but being informed that we had won the grand prize was absolutely phenomenal.

Two influencers spread our message during September: South African Springbok rugby captain Siya Kolisi and television personality Siv Ngesi. Also, ‘Bikers for Bone Marrow’ was held on Sunday 16 September 2018; the Cape Town Motorcycle Club, who first became involved with the SABMR in 1996 when a club member was diagnosed with leukaemia, held a 200 km drive to the scenic Grabouw to spread awareness while riders and bikes were all decked out in

March 2019. With 36 years’ experience in a global pharmaceutical industry, he brought to the SABMR the required skills and understanding of the needs of an accredited organisation. His role is to oversee quality-related processes with the chief aim of maintaining the SABMR accreditation status.

The originality prize was won by the Romanian registry, Registrul National al Donatorilor Voluntari de Celule Stem Hematopoietice, for their moving outdoor light display and the incentive prize was won by Canadian Blood Services for their ‘Click, Click, CAPE!’ campaign. The SABMR took the grand prize for our multifaceted campaign. In 2019 World Marrow Donor Day will be held on Saturday 21 September and there are over 100 registered events scheduled worldwide. There are currently ~35 million donors across 137 organisations in 53 countries signed up to be potential donors for patients around the world, and to everyone we’d like to say #THANKYOUDONOR.

Moneeb has a quiet but firm approach to quality management and has shown himself to be both forward-thinking and goal-oriented. He manages his tasks with quiet but firm diplomacy, an approach to quality management which will support the SABMR to maintain World Marrow Donor Association Accreditation.

9


GOVERNANCE, FINANCE & Sustainability GOVERNANCE, FINANCE AND SUSTAINABILITY Suggested presentation of financial results ASSETS

SABMR BOARD MEMBERS

2019

CASH AND CASH EQUIVALENTS*

AS AT 31 MARCH 2019

7 397 112

OTHER CURRENT ASSETS LONG-TERM INVESTMENTS

MR D. AURET (CHAIRMAN) DR C.F. INGRAM (CEO AND MEDICAL DIRECTOR) MRS T. SCHLAPHOFF (DEPUTY DIRECTOR) MR D. COHEN DR R. CROOKES MS J. HARIRAM DR S.D. MOODLEY DR B. MTUKUSHE PROFESSOR N. NOVITZKY DR C. POOLE DR M. VAITHILINGUM

PROPERTY, PLANT AND EQUIPMENT

2018 10 023 975

3 021 727

3 230 733

18 118 065

17 009 508

1 283 815

1 345 800

CURRENT LIABILITIES

10 746 329

14 724 395

NET ASSETS

19 074 390

16 885 621

PROGRAMME SERVICES

5 328 060

4 334 484

SPONSORSHIPS AND DONATIONS

1 175 842

196 939

INVESTMENT INCOME

1 495 660

1 352 768

EXTRAORDINARY GAIN

3 888 934

FUNDING SOURCES

-

OPERATING AND VALUE DISTRIBUTION

CHANGES SINCE 31 MARCH 2018

MANAGEMENT, PUBLIC LIAISON AND FUNDRAISING

MRS C. KOTZENBERG RESIGNED DR B. MTUKUSHE NEWLY APPOINTED TO BOARD DR C. POOLE NEWLY APPOINTED TO BOARD

7 813 791

STAFF RECRUITMENT

44 867

52 982

633 359

277 428

1 284 712

81 602

REGISTRY DEVELOPMENT DONOR RECRUITMENT PATIENT ASSISTANCE

216 069

SURPLUS (DEFICIT) REINVESTED TO FURTHER REGISTRY'S MISSION

5 824 438

1 895 698

(352 259)

ASSETS AND(excluding LIABILITIES Revised bar graph information in brackets and formatting of the horizontal axis) 2019 • 2018

ASSETS AND LIABILITIES

20000000

2019 • 2018

18000000 16000000

20000000

14000000

18000000

12000000

16000000

10000000

14000000

8000000

12000000 10000000

6000000

8000000

4000000

6000000

2000000 0

4000000 2000000

CASH AND CASH EQUIVALENTS*

OTHER CURRENT ASSETS

2019 FUNDING SOURCES

0

LONG-TERM INVESTMENTS

PROPERTY, PLANT AND EQUIPMENT

2018 FUNDING SOURCES

PROGRAMME SERVICES SPONSORSHIPS AND DONATIONS

PROGRAMME SERVICES

INVESTMENT INCOME

SPONSORSHIPS AND DONATIONS

EXTRAORDINARY GAIN

INVESTMENT INCOME

2019 VALUE DISTRIBUTION

10

2018 VALUE DISTRIBUTION

MANAGEMENT, PUBLIC LIASON LIAISONAND ANDFUNDRAISING FUNDRAISING

MANAGEMENT, PUBLIC LIASON LIAISONAND ANDFUNDRAISING FUNDRAISING

STAFF RECRUITMENT

STAFF RECRUITMENT

REGISTRY DEVELOPMENT

REGISTRY DEVELOPMENT

DONOR RECRUITMENT

DONOR RECRUITMENT

PATIENT ASSISTANCE

PATIENT ASSISTANCE

CURRENT LIABILITIES


SABMR’S PATIENT Assistance Programme Providing financial assistance for South African patients. by Alicia Venter

T

oo often we are faced with the impossible task of finding a matched unrelated donor for a patient with an incredibly difficult genetic phenotype. Although there are over 36 million donors registered worldwide, patients from minority ethnic groups are still underrepresented and seldom find the match they need. While targeted donor recruitment strategies are used to curb this dilemma, little was done for the patients who the SABMR managed to find the perfect matched donor but couldn’t afford the life-saving treatment, until now.

have the financial resources to formally activate their donor search. Should the patient meet the programme’s requirements, financial support will be allocated towards the costs of the search

To compliment the services that the SABMR already provides, we’ve developed a programme for South African patients in need of a stem cell transplant from a matched unrelated donor but who do not

for and testing of the local and/or international donors and may be extended to cover the stem cell procurement should a suitably matched donor be identified by the SABMR.

“THIS PROGRAMME HAS ALREADY FACILITATED THE SUCCESSFUL STEM CELL TRANSPLANTATION OF FIVE SOUTH AFRICAN PATIENTS”

All funding applications are submitted to the SABMR’s Medical and Ethics Review Panel (MERP), chaired by board member Dr Robert Crookes. Careful consideration of the patient’s clinical and financial status is taken when evaluating their application towards funding to ensure a fair yet medically relevant outcome. An anonymous panel of haematologists adjudicates the applications and provides their comments on whether to approve the required funding to the SABMR search department. Launched in November 2018, this programme has already facilitated the successful stem cell transplantation of five South African patients who would have gone untreated were it not for the financial assistance provided by the SABMR.

11


Belgium 4 Netherlands 3 Spain 1

Germany 216

Norway 2

Switzerland 3

Denmark 1

Canada 4

Austria 1

Poland 9

Russia 1 United Kingdom 38

USA 52 France 14

Portugal 1

Taiwan 3

Italy 6 Cyprus 2

Brazil 3

Israel 7

Singapore 1

Australia 4

South Africa 126

DONORS FOR SOUTH AFRICAN PATIENTS FAMILY ASSISTANCE TO PATIENTS

REGISTRY ASSISTANCE TO PATIENTS

LOCAL DONORS FOR INTERNATIONAL PATIENTS

31 DECEMBER 2018

31 DECEMBER 2018

31 DECEMBER 2018

COUNTRY OF PATIENT

NETHERLANDS

1

SWEDEN 1

COUNTRY OF PATIENT

NETHERLANDS

1

USA 4

KENYA 1

SOUTH AFRICA

3

AUSTRIA 1

GERMANY 4 INDIA 1

COUNTRY OF DONOR GHANA 1

2

FRANCE 1

AMERICA 1

NIGERIA 1

AUSTRALIA

ITALY 3

COUNTRY OF DONOR

NETHERLANDS

1

NETHERLANDS

1

PORTUGAL 1 SPAIN 1

NIGERIA

1

SWEDEN 1 UK 4 USA 6

12


SABMR Fact Sheet

SABMR

31 December 2018

Fact Sheet

Email: Charlotte.Ingram@sabmr.co.za Website: www.sabmr.co.za

DONORS – Recruitment/Attrition

DONORS – Summary for 2018 Number of Registered Donors: HLA-ABCDR+ HLA-ABDR HLA-AB Gender Female Male Ethnicity Asian/Indian Black Coloured White Other/Unknown Total:

72338 2 597 27 184 42 557

3.6% 37.6% 58.8%

44 097 28 241

61.0% 39.0%

7 226 6 723 5 633 48 484 4 272

10.0% 9.3% 7.8% 67.0% 5.9% 100%

SERVICES – South African Patients New Preliminary Searches in 2018 Asian/Indian Black Coloured White Other/Unknown

229 11 74 26 110 8

New Activated Searches in 2018 Asian/Indian Black Coloured White Other/Unknown

105 7 18 14 65 1

Patients Transplanted in 2018 SABMR donor International donor

40 13 27

SERVICES – International Patients Activated Searches Transplanted with SABMR donor Family Donor Assistance

206 2 2

New Donors added in 2018: Asian/Indian Black Coloured White Other/Unknown Total:

1 282 56 114 145 922 45

Donors deleted in 2018: Age limit reached Medical reason Death Unable to trace Emigrated Personal request Following HSC donation Other reasons Total:

1 917 1 494 82 3 173 85 50 18 12

4.4% 8.9% 11.3% 71.9% 3.5% 100%

77.9% 4.3% 0.2% 9.0% 4.4% 2.6% 0.9% 0.6% 100%

Level of typing of registered SABMR donors Ethnicity Asian/Indian Black Coloured White Other/Unknown

Total:

# of Donors

% HLA-ABDR typed

3 950 6 039 3 784 15 005 1 003

54.7% 89.9% 67.2% 30.9% 23.5%

29 781

41.2%

SABMR Donors requested on behalf of patients Requested for DR/Extended typing:

467

Requested for verification typing: South African patients International patients

109 21 88

HSC donations in 2018: South African patients International patients

15 13 2

13


SUID-AFRIKAANSE BEENMURGREGISTER ’N KORT OORSIG

Elke jaar bereik honderde Suid-Afrikaners met bloedsiektes soos leukemie, die punt waar hulle enigste kans op oorlewing ’n beenmurgoorplanting is. Die SABMR is in 1991 gestig, gemotiveer deur die kommer dat alhoewel beenmurgoorplantings ’n oorlewingsterapie is, dit slegs beskikbaar was aan pasiënte wat ’n geskikte skenker binne hul familie kon vind. Vandag soek die SABMR plaaslik en internasionaal na skenkers, in samewerking met internasionale beenmurgregisters wat gesamentlik universele standaardpraktye waarneem.

70%

DIE SABMR SOEK VIR ELKE PASIËNT

VAN PASIËNTE IN

NOOD SAL ’N ANONIEME SKENKER BENODIG

’N SKENKER OP PLAASLIKE EN INTERNASIONALE DATABASISSE

1 UIT 100 000

PASIËNT SE KANS OM ’N GESKIKTE ANONIEME SKENKER TE VIND ONGEVEER DIE

73

HOEVEELHEID

GEREGISTREERDE

VRYWILLIGE

SKENKERS OP DIE SABMR

DUISEND

SABMR HET TOT OP 31 DESEMBER 2018

481

STAMSEL-OORPLANTINGS VIR SUID-AFRIKAANSE PASIËNTE GEFASILITEER

OP 21 SEPTEMBER 2019

VIER ONS

DIE SABMR

IS ’N GEREGISTREERDE NIE-WINSGEWENDE ORGANISASIE EN IS GROOTLIKS AFHANKLIK VAN DONASIES

#THANKYOUDONOR

DIE SABMR ORGANISEER

EN FASILITEER INTERNASIONALE VERVOER VAN STAMSELLE VANAF ANONIEME INTERNASIONALE SKENKERS

DIE SABMR WERF NUWE

STAMSELSKENKERS VANAF ONS WEBBLAD WWW.SABMR.CO.ZA

27%

PERSENTASIE

VAN SKENKERS OP DIE SABMR WAT MENSE VAN KLEUR IS

ONGEVEER DIE

HOEVEELHEID

SUID-AFRIKAANSE PASIËNTE WAT OPSOEK IS NA ’N GESKIKTE ANONIEME SKENKER

200


STORIES

CELEBRATE LIFE by Marlene Stals

“IT HITS HOME THAT SOMEONE COULD DO SOMETHING LIKE THIS FOR SOMEONE THEY DON’T EVEN KNOW. IT’S VERY SPECIAL” Hayleigh Stals from East London celebrated two milestones this year: her ninth birthday, and her first ‘rebirthday’ – the anniversary of her successful bone marrow transplant.

A

lthough Hayleigh was in all other ways a normal eightyear-old, large bruises kept appearing on her body. Then, after her school recommended she see an audiologist for hearing issues, she was sent to an ear, nose and throat specialist. Hayleigh was booked into hospital to have her adenoids removed, on the ENT’s recommendation, and then came the shock: she had dangerously low platelet counts – a mere 17 000 per microlitre of blood as opposed to the norm of 150 000 upwards. Hayleigh immediately had a blood transfusion and a bone marrow biopsy. The diagnosis was Fanconi anaemia, a rare inherited blood disorder that leads to bone marrow failure. “Our world was turned upside down,” says her mom, Marlene. Hayleigh would need a bone marrow transplant, and although her two-year-old sister Mikaylah was identified as a possible donor, further tests showed the tissue match was not sufficient.

Professor Nicolas Novitzky of UCT Private Academic Hospital, who would oversee the transplant, turned to the SABMR for help. As if by miracle, a South African woman was identified as the perfect match for Hayleigh. “The phone call came on a Friday afternoon. We still get emotional just thinking about that day,” says Marlene. While dad Johan looked after Mikaylah in East London, Marlene and Hayleigh went to Cape Town, where they’d spend four months moving between the CHOC house in Plumstead, UCT Private Academic Hospital and the Red Cross War Memorial Children’s Hospital. Support flowed in from family, church friends, work colleagues, volunteer workers and fellow moms who have been through similar experiences; according to Marlene they made lifelong friends in Cape Town.

The pair eventually returned home to East London. Despite another spell in Life Beacon Bay Hospital in East London under the guidance of Hayleigh’s paediatrician, eight months after the transplant her blood counts had finally stabilised. Without a mask, they could finally go into crowded spaces, shops and she was healthy enough to return to school. The family is delighted that Hayleigh can play, fall and graze her knee, and there’s no need for worry. She is now a normal, energetic child enjoying life. She loves building her Frozen Lego, riding a bike and climbing monkey bars. In December, the Stalses had their first post-transplant family outing: the Reach For A Dream Foundation organised a hotel getaway with ice skating and bumper car rides.

The transplant went smoothly, although Hayleigh felt nauseous.

“I fell down quite a few times,” Hayleigh giggles, “and I skate faster than my mom!”

“My mom gave me a present on the day of my transplant – a ‘new birthday’ present!”, Hayleigh said and the Frozen Lego set kept both mother and daughter happily occupied during their weeks in an isolation ward, both after the transplant, and again when Hayleigh contracted cytomegalovirus a week after being discharged from hospital.

Hayleigh often asks her parents about the ‘special lady’ who donated her stem cells and looks forward to meeting her one day. “It hits home,” says Marlene, “that someone could do something like this for someone they don’t even know. It’s very special.” VISIT HAYLEIGH’S FACEBOOK PAGE

FACEBOOK.COM/HAYLEIGHSFAJOURNEY

15


6 HOURS

TO SAVE A LIFE For Sibongile Jimlongo, 25, a final-year law student at the University of the Western Cape, donating bone marrow was ‘an honour’.

S

ibongile became interested in donating blood while attending Rhenish Girls’ High School in Stellenbosch, as donor drives were held at Paul Roos Gymnasium across the road. Since 2013, she has been a frequent blood donor. “If I’m healthy and I’m able to give blood, it’s the least I can do. It’s selfish of me not to give!” she says. In early 2017, a bone marrow recruiter approached Sibo while she was donating blood on campus at UWC. “She explained what bone marrow donation was all about, that a stem cell match needed to be like somebody’s clone, and that ethnicity plays a big part. Would I consider it?” A bone marrow donor is usually found within one’s ethnic group, and South Africa urgently needs more black donors to save patients with leukaemia and other blood diseases. Sibo signed up. To her surprise, in January 2018 she was

16

phoned by the SABMR to ask if she’d be prepared to have further blood tests as she might be a match for a patient. After a slew of tests another call came: she was indeed a perfect match. Why would she subject herself to the inconvenience and possible pain, a few people she knew wondered. “There’s a bigger picture,” she says. “it’s not about you; it’s about the next person. You’re saving a life so someone else can do the things they envision.”

“THE OPPORTUNITY TO GRANT SOMEONE A FULL LIFE, WHAT AN HONOUR!” Sibo saw her impending donation as a great opportunity to educate others and her donation was scheduled before exams, in September 2018. For four days prior to this, she had Neupogen injections (which she chose to administer herself) to stimulate her bones to produce extra stem cells. On the morning of the donation, she and two friends drove to Netcare Kuilsriver Hospital, where the process was overseen by friendly hospital staff, an SABMR staff member and a social worker.

From a tube into her femoral vein, her blood was sent into a machine where the stem cells were separated out; the rest of her blood was returned to her. “It took about six hours. One of my friends was as fascinated by the process as I was; we’ve watched a lot of Grey’s Anatomy!” Sibo laughs. “Afterwards I was quite emotional, thinking how the bag of stem cells would now go to whoever needed it. The SABMR was great: they go to the ends of the earth to ensure everything goes smoothly. Within three days the small incision from the intravenous line had healed. Everything was back to normal. I had no side effects. It really was quite an experience,” she says. All Sibo knows of her recipient is that the patient is a South African child. “It meant a lot to me that I was saving a little person’s life,” she says. The donation was especially poignant for Sibo’s family, she had lost her great aunt to leukaemia shortly before her donation. “I think it’s one of the greatest things I’ve ever done. It’s one of the best acts of humanity, she says, “if I’m healthy and in a position to grant the opportunity to live life fully to someone else, what an honour!”


STORIES

IBALI

“OKU KUNIKELA KWAZICHUKUMISA NGOKUKODWA IINTLIZIVO KUSAPHO LWAKULOSIBO”

LOMNIKELI KuSibongile Jimlongo, 25, umfundi owenza unyaka wokugqibela kwezomthetho kwiYunivesithi yaseNtshona Kapa, ukunikela ngomongo ‘ibiliwonga’

U

Sibo waba nomdla wokunikela ngegazi ngelixa wayefunda kwiSikolo i-Rhenish Girls’ High eStellenbosch, njengoko amaphulo okunikela ayeqhutywa ePaul Roos Gymnasium ekwelinye icala lendlela. Ukusuka ngo-2013, ebengumnikeli ngegazi othe rhoqo. ‘Xa ngaba ndisempilweni yaye ndiyakwazi ukunikela ngegazi, yeyona nto incinane ndinokuyenza leyo. Ndingaba ndicingela mna ndodwa xa ndinganikeli!’ utsho njalo. Ekuqaleni kuka-2017, umntu ogaya abantu abanokunikela ngomongo wathetha noSibo ngelixa wayenikela ngegazi kwi-campus e-UWC. “Wandicacisela ukuba kuthetha ntoni ukunikela ngomongo, wathi umntu ofanelekayo kwi-stem-cell kufuneka afane ncakasana naloo mntu oza kuncedwa, watsho nokuba ubuhlanga buyinxalenye enkulu. Ingaba ndingakhe ndicinge ngokunikela?” Umntu onikela ngomongo ngokuqhelekileyo ufumaneka phakathi kolo hlanga lwesigulane, yaye eMzantsi Afrika bafuneka kakhulu abanikeli abamnyama ukuze kusindiswe izigulane ezine-leukaemia nezinye izifo zegazi. USibo wabhalisa.

Into eyammangalisayo kukuba ngoJanuwari 2018 wafowunelwa ngu-SABMR bembuza ukuba angakulungela na ukuba enziwe ezinye iimvavanyo zegazi njengoko kusenokwenzeka ukuba ungumntu ofanelekayo ukunceda isigulane esithile. Emva kothotho lweemvavanyo ezathi zenziwa kwafika enye ifowuni: ngenene ungumntu ofaneleke ngokugqibeleleyo. Yintoni bethu emenza azixakekise ngolu hlobo azivise nentlungu ekungenzeka ihamba nale nto, abantu abambalwa abaziyo babuza. “Kubandakanyeke izinto ezibalulekileyo apha,” utsho njalo. Le nto ayikho malunga nawe; imalunga nomnye umntu. Usindisa ubomi ukuze omnye umntu akwazi ukwenza izinto anombono wokuzenza.” Into yokuba eza kunikela wayibona njengethuba elikhulu lokufundisa abanye. Ukunikela kukaSibo kwakucwangciselwe ukuba kwenziwe ngaphambi kokuba abhale iimviwo, ngoSeptemba 2018. Yonke imihla kangange entsuku ezine ngaphambi koku, watofwa nge-Neupogen (wakhetha ukuzitofa ngokwakhe) ukuze kuvuselelwe amathambo akhe avelise iistem cell ezithe chatha. Ngentsasa yosuku lokunikela, yena neetshomi zakhe ezimbini bahamba ngemoto besiya kwiSibhedlele i-Netcare Kuilsriver, apho le nkqubo yayisenziwa phantsi kweliso labasebenzi besibhedlele abanobubele, ilungu labasebenzi bakwa-SABMR kwakunye nonontlalo-ntle. “Kwathatha into enokuba ziiyure ezintandathu. Omnye weetshomi zam wayethabatheke

njengam yile nkqubo; sikhe sabukela kakhulu i-Grey’s Anatomy!” qhuzu qhuzu uSibo ehleka. Ukusuka kwityhubhu efakwe kumthambo osethangeni lakhe, igazi lakhe lathunyelwa kumatshini othile apho ii-stem cell zazisohlulwa egazini; elinye ke igazi lakhe labuyiselwa kwakuye. “Emva koko zesuka zathi waxa iinyembezi, xa ndicinga ngento yokuba ngoku ezi stem cell ziza kuya kuloo mntu uzidingayo. Ndibothulel’ umnqwazi abakwa-SABMR: akukho nto bangayenziyo ukuqinisekisa ukuba yonke into ihamba ngokutyibilikayo.” Zingaphelanga neentsuku ezintathu inxetyana kwindawo ebekungena kuyo inaliti netyhubhu yokuhambisa igazi ukuya kumatshini wokuhluza iiseli beselipholile. “Yonke into yabuyela esiqhelweni. Ndandingenaziphumo zingalindelekanga. La ibingamava okwenene,” utsho njalo. Ekuphela kwento ayaziyo uSibo ngomntu ofumene umongo wakhe kukuba isigulane ngumntwana waseMzantsi Afrika. “Yinto enkulu le kum ukusindisa ubomi bomntwana,” utsho njalo. Oku kunikela kwazichukumisa ngokukodwa iintliziyo kusapho lwakuloSibo, njengoko udadobomakhulu wakhe ebesandul’ ukubashiya ngenxa ye-leukaemia ngaphambi nje kokunikela kwakhe. “Ndicinga ukuba yenye yezona zinto zinkulu ndakhe ndazenza. Esi sesinye sezona zenzo zincomekayo zobuntu,” utsho njalo. “Xa ngaba ndisempilweni yaye ndiyakwazi ukunika omnye umntu ithuba lokuphila ubomi bakhe ngokupheleleyo, liwonga elikhulu nyhani elo!“

17


STORIES

PATIENT MEETS HIS DONOR

I

by Jane Ward & Clarice Cairncross

t does not happen very often but on occasion, and when all parties agree, patients get to meet their donors. In the beginning of 2019, Johan Weyers, the SABMR’s 100th donor, got to meet the person to whom he donated stem cells to in 2014, Barend (Barry) van der Merwe. Jane Ward and Clarice Cairncross, the SABMR’s Harvest Coordinator and Donor Welfare Officer, met with the donor and patient in Bloemfontein and shared a few special moments. “The SABMR policy allows patients and donors to meet 3 years post-transplant. The patient, Barend van der Merwe, better known as Barry, is married to Jo-Anne who wanted to surprise her husband on his 5th transplant anniversary with the meeting,” says Jane Ward, “but the patient’s physician, the patient and donor, need to give consent. If either of the parties do not give consent, then the exchange of personal details and a meeting is not allowed.” Even though Barry knew that he would meet his donor, it was still a surprise nonetheless to meet the man who gave him a second chance at life. Johan Weyers registered as a donor 10 years before he was called up and informed that he might be a bone marrow match for a patient. He accepted the request and after several blood tests confirmed that he was a perfect match for the patient he became the SABMR’s 100th

18

donor, only knowing that the recipient was a father of two. After the transplant, Weyers revealed, “I would like to meet him one day, just to find out how he is doing. For me, if I only help him have another hour with his family, to say goodbye, that is more than enough.” More than an hour went by, in fact, five years went by and emotions flooded when Barry and Johann met each other face to face for the first time.

“IT FELT LIKE TWO FAMILY MEMBERS OR BROTHERS WERE MEETING” When they met, they walked straight into each other’s arms. Neither of them had words at that moment and everyone who witnessed the meeting, had tears in their eyes. Barry told his donor, “I have no words because no words can describe how thankful I am.” Donor Johan, who also works at a non-profit organisation for cancer, explained to Barry and his family how he got involved with the SABMR; he elaborated on the story on how he got called up as being a potential match and the process that was followed through up until his harvest date.

Johan says: ‘Dit was ’n ondervinding om die skenking te kon mee maak, maar om na 5 jaar nog deel van iemand se lewe te wees en dan te kan ontmoet is ongelooflik. Die stories wat Barry vertel het en die ondervindinge - van die lekker tot die moeilike dae - was so interessant. Om te dink dat hier sit ’n man van 50, ’n SA waterski-kampioen, en jy besef net weer kanker vra nie ras, klas, ouderdom, of enige van die ‘moets en belangrike reëls’ in ons lewens se omgang nie. Ek kan net vir die SABMR dankie sê vir julle ondersteuning vir die afgelope 6 jaar vandat ek die eerste toetse begin het tot en met die ontmoeting, julle is so deel van ons lewens, dit is werklik onbeskryflik. Daar gebeur goed met ons op ons lewenspad wat ons nie altyd verstaan nie, maar wanneer ons terug kyk was alles die moeite werd. Ek hoop dat elke Suid-Afrikaner deel kan word van so ’n wonderlike instansie soos die SABMR en die inspirerende werk wat hul doen!’ Clarice Cairncross, the Donor Welfare Officer at the SABMR, recalled the meeting as a truly special moment. She says, “To witness and be there when patients and donors meet is one of the best aspects of my work. Personally, it felt like two family members or brothers were meeting. They are connected in a very special way. It was wonderful to meet Barry and Johan, as well as the family members on that day. It was hugely uplifting and emotional at the same time.”


Meaningful engagement

WITH STAKEHOLDERS The SABMR sets the scene for ongoing customer-centric service delivery with a long-term strategy to move from regional footprints to a continuous national presence.

N

adia Chalkley joined the South African Bone Marrow Registry on 1 July 2018 as the Donor Recruitment Officer and immediately dove into an array of directed marketing activities primarily focused on diversifying the existing database. “I feel privileged to come to work every day knowing I can have a meaningful impact on lives and encourage others to contribute in some way. Bishop Desmond Tutu once said: ‘My humanity is bound up in yours, for we can only be human together.’ We can all contribute to saving more lives today… together.” Chalkley oversees the SABMR’s donor recruitment nationally through targeted awareness and marketing campaigns. “Donor recruitment reached far and wide in terms of growing a diverse applicant recruitment pool. The SABMR has set the scene for ongoing customer-centric service delivery with its proprietary applications processing and management system,”says Nadia. Corporate drives, higher education collaboration and specific customised community events were implemented to build long-term relationships and to ensure more meaningful engagement with stakeholders. Education was important as well as re-education in terms of the myths surrounding stem cell harvesting and the relationship between the SABMR and The Sunflower Fund. Donor recruitment worked with new applicants every step of the way, providing and updating information materials and offering ongoing help and

support throughout the complex application process. It is extremely important for potential donors to think carefully about the implications of joining the Registry. An important initial consideration was to increase tele-recruitment results without severely impacting capacity. This was particularly challenging in terms of developing the correct online platforms and balancing online and offline recruitment initiatives. Another important area of focus was to increase the number Buccal Swab Kits available to customers and the negotiation of locations to offset Buccal Swab Kits nationally. Pathcare, Intercare, Vermaak and Partners, SANBS and Western Cape Blood Service offered appointment-based delivery of swabs throughout the country. Courier IT came on board as the local logistics partner. From July 2018 onwards, the SABMR dispatched and collected close to 800 kits for online applicants and an additional 200 through donor recruitment drives. The SABMR operated in an integrated recruitment fashion from the get go, an important success factor in terms of reaching all regions in South Africa. The long-term strategy is to move from regional footprints to a continuous national presence and the efforts and foundation laid in 2018 set the scene for a bigger and bolder 2019.

............................................................................

19


Creating

SUSTAINABLE WAVES of CHANGE Sustainability Portfolio Manager found a passion — a purpose — through the SABMR.

K

amiel Singh was appointed as the South African Bone Marrow Registry’s new Sustainability Portfolio Manager. Singh has been creating waves of change and awareness since taking charge of multiple campaigns and events. There are currently 73 000 registered donors on the SABMR to cater to over 57 million South Africans and through campaigns such as the festive season’s ‘Give a Little, Save a Life’ and the first ever SABMR Golf Day, Singh is taking these statistics to heart in order to expand the registry and obtain much needed support and funding. Singh has found a passion and purpose through the work he has done for the South African Bone Marrow registry and reflects:

“How can I make a difference and give my skills new meaning? “What am I doing for others? “Joining the SABMR as Sustainability Portfolio Manager became my new passion. It allowed me to contribute my vast experience of retailing, operations and leadership management, to create a perfect and sustainable non-profit organisation. “Saving lives of people that are in need of a stem cell transplant is a cause that is close to my heart; to raise awareness, as well as funds, through campaigns and events is something that is more than just a job. It is an opportunity to give someone a second chance for a better tomorrow.

“HOW CAN I MAKE A DIFFERENCE AND GIVE MY SKILLS NEW MEANING?”

“You wake up every morning thinking about this famous Martin Luther King quote, ‘Life’s most persistent and urgent question is: what are you doing for others?’ “You ask yourself what can I bring to any business or company?

20

“With the passion and drive, this wonderful company will be fully sustained and it enables the South African Bone Marrow Registry to do the wonderful and important work it does: to save lives and provide hope for all patients in need of a bone marrow stem cell transplantation.” ............................................................................


Global

MEETINGS Networking for a better tomorrow.

JOINT WMDA FALL MEETING AND NMDP COUNCIL MEETING 7-10 NOVEMBER 2018, MINNEAPOLIS, USA BY ALICIA VENTER

With a theme ‘Calling all Superheroes!’ the joint meetings were sure to be fun, thought-provoking and educational, and it did not disappoint. The joint meetings were held between 7 and 10 November 2018 at the Council Meeting Headquarters, Hilton Minneapolis. The program was filled to the brim with 30+ educational sessions, networking opportunities with fellow colleagues and transplant centre staff, WMDA Working Group sessions and an exciting Saturday dinner event featuring live entertainment. The not-to-be-missed networking sessions and social events kept everyone warm and cosy inside while snow drifted past the hotel windows; a true winter wonderland for South African-born travellers, Alicia Venter (Search Coordinator) and Jane Ward (Harvest Coordinator) who attended the meetings.

Notable presentations from the scientific programme: Around the World in 60 Minutes An International Caped Adventure Colleagues from various international registries elaborated on how they manage day-to-day challenges, providing insight and out-of-the-box problem solving ideas to their peers.

Emerging Gene Therapy Strategies Challenges, Risks and Potential for Cure in which we got to learn more about CAR T-cell therapies and the role registries might play in facilitating its success.

Palliative Care in HCT: Benefits, Challenges and the Patient Experience that provided some perspective which often gets lost when dealing with multiple patient searches and stem cell collections simultaneously.

21


AFRICAN DIASPORA SYMPOSIUM 18-19 APRIL 2019, MINNEAPOLIS, USA

BY ALICIA VENTER

For a second year running, the SABMR was invited to attend a summit to help the National Marrow Donor Program (NMDP) become better at serving the needs of all patients in need of cellular therapy, particularly patients with African ancestry. As the only internationally accredited registry in Africa, the SABMR is well-placed to provide suggestions on how such an endeavour could be achieved.

“STRATEGIES DEVELOPED ARE VALUABLE IN SOLVING THE PROBLEM FOR OUR OWN BLACK PATIENTS WITHIN SUB-SAHARAN AFRICA” However, as this is a global problem, the SABMR benefits just as much as the NMDP from the summit as the strategies developed by both the genetics and socio-cultural subgroups are valuable in solving the problem for our own black patients within sub-Saharan Africa. Search Coordinator, Alicia Venter, represented the SABMR in the Genetic Approach Group to share her experience in donor search strategies for black South African patients. Many of the approaches listed (see insert on right) already form part of the SABMR’s strategic goals and we hope to see them bear fruit over the coming years.

22

Primary recommendations for genetic approaches to improve access included:

Primary recommendations for socio-cultural approaches to improve access included:

Partnerships and recruitment opportunities in other countries are critical. .............................................................. To improve our recruitment for black/ African-Americans donors, we need to embrace quality vs quantity. It is not about registering a huge number of potential donors it is about recruiting the right potential donors, those with an HLA type needed on the Registry. Targeted recruitment is the best option. .............................................................. We need to understand the HLA picture from African countries. .............................................................. We need to steer away from referring to people with African descent as a monolithic group. These groups should be split into smaller, more homogeneous groups. They are very diverse across the country. Understanding this and working through those who know the community well will be important. .............................................................. Can we ask Registry members who identify as black/African-American where their parents came from, where their grandparents and great grandparents came from? That would help stratify different groups. Work with Registry Communications to do that. .............................................................. Should we have a disease-focused approach to recruitment? Do Sickle Cell Disease (SCD) patients have particular or different HLA types? Once that is known then geo target recruitment can happen. .............................................................. Instead of patient donor drives why not try heritage donor drives, very specific geographic heritage donor drives informed by anthropological/ immigration/genetics research. .............................................................. When collecting data at registration, we need to improve the form; particularly the ancestry, we could ask about genetic ancestry tests, or questions about grandparents. .............................................................. Partnerships and recruitment opportunities in other countries are critical.

We need to raise our profile; an organisation cannot build trust if there is no awareness of its existence. .............................................................. Educate the industry, primary care physicians and families but also those who have aged out of donating so they can educate their children and act as influencers. .............................................................. Personalise the experience of joining the registry, attach ancestry to messaging, and outreach to native black applicants. .............................................................. Educate potential members early, for example in high school, and expand altruism, become morally encouraging. Develop an early awareness/relationship. .............................................................. Develop community councils/advisory groups. Before we do anything, the strategy needs to talk to the community first. Improve the cultural competency for donor search. .............................................................. Advertise upfront how we can help the donor with rides, appointments, babysitting and more when they are requested to proceed with the collection of their stem cells. .............................................................. Community outreach through small localised community-based organisations. .............................................................. Use narratives to educate potential donors using highly culturally sensitive outreach strategies and messaging. Build awareness, they must be long-term conversations, a continuous sustainable program. .............................................................. Expand our international/global footprint. .............................................................. Use influencers such as celebrities who are invested in our cause. .............................................................. Improve representation across the board. Over-represent African-Americans on our website and other web properties.


SASMO/SASCETS CONFERENCE 16-18 NOVEMBER, 2018 DURBAN ICC BY JANE WARD

This was the first year that the South African Stem Cell Transplant Society (SASCeTS) was held in conjunction with the South African Society of Medical Oncologists (SASMO). Under the theme of the SASCeTS conference ‘Myeloma, the solution is still within’, Professor Benedetto Bruno (Head of the Transplant Program at the School of Medicine of the University of Torino in Italy) spoke about conditioning regimens in multiple myeloma and the role of allogeneic stem cell transplant in multiple myeloma.

McDonald, Dr Hannes Koornhof, Dr David Brittain, Dr Karen Gunther, Dr Sharlene Parasanath and Dr Justin du Toit. I presented on ‘The South African Bone Marrow Registry (SABMR) Doing it Digitally in 2018’. I spoke about SABMR’s new online recruitment platform as well as the new proprietary software program to manage new donor applicants being recruited using buccal swabs. As this was a combined conference other interesting topics included ‘Zulu speaking patients responses to a cancer diagnosis, a qualitative study’; ‘Lessons to be Learnt: The Evolution of Oncofertility in France’ and ‘Precision Oncology: Who, How, What, When and When Not?’

Topics included: Anti-thymoctye globulin in patients undergoing haematopoietic cell transplantation from unrelated donors. Trends in haematopoietic stem cell transplantation – Experience from the South African National Blood Service and Management of donor-specific antibodies in haploidentical transplantation to name a few.

“NEW PROPRIETARY SOFTWARE PROGRAM TO MANAGE NEW DONOR APPLICANTS BEING RECRUITED USING BUCCAL SWABS”

CAR T-cells also featured prominently in the programme with international speakers, Professor Matthew Seftel (Head of the Transplant Programme at CancerCare in Winnipeg, Mantioba in Canada), speaking about the use of CAR T-cells in haematological conditions as well as Dr Boro Dropulić (Chief Science Officer and General Manager of Lentigen, Miltenyi Biotec Company), who spoke about a decentralised approach to CAR T-cell therapy.

The conference featured other well-known local speakers such as Dr Andrew

This was the first conference the SABMR participated in as an exhibitor handing out information about becoming a donor as well as about SABMR’s patient assistance program; Siphokayzi Dyasi and Kamiel Singh from the SABMR headed as exhibitors and potential new investors were approached for funding through our Sustainability Portfolio. The conference included a welcome cocktail (16 November) as well as a congress dinner (17 November); great fun was had and it allowed all to let their hair down after a series of significant topics and insightful discussions.

23


Embracing Future

TECHNOLOGIES SABMR goes digital. by Alicia Venter

T

o remain relevant in today’s fast paced and ever-changing environment, it is important for the SABMR to be mindful of emerging technologies that could potentially enhance its operations and, when possible, even be an early adopter of such technological advances. With careful consideration on how such changes would impact day to day workflow, as well as patient and donor information security, the following Information Technology (IT) changes were made during 2018:

SWITCHING TO XML The SABMR contributes approximately 73 000 donors towards the international donor database, formally known as Bone Marrow Donors Worldwide (BMDW). To enable international registries to search against our local database, anonymised donor data is shared on a secure webbased portal designed for search coordinators. With the 2017 launch of the new international donor database, WMDA’s Search and Match Service (WSMS), the possibility of sharing better quality and more relevant donor data arose. This however required that all datafiles shared in the antiquated DOT20 format be changed to Extensible Markup Language (XML) format, which is considered an industry standard that is extendable, secure, robust and easy to use.

24

The benefits of these changes are:

An increased chance that SABMR donors could be identified for international patients in need by providing additional anonymised donor data; A secure platform to upload and download data files that comply with the European data protection regulation and ISO 2700:2016; A streamlined web-based data upload service with the possibility to upload data manually or automatically (via API connection) on a daily basis ensuring that the most current donor data is available to search coordinators at all times; and Improved reporting of the processed data files and downloading functions of those reports through the WSMS data upload service.

The SABMR formally switched to the XML format on 30 May 2018 and, in addition to donor HLA, now shares donor gender, age, blood group, ethnicity, last contact date, CMV status, CCR5 and the donor’s registry assigned identification number.


NEW SABMR WEBSITE

DIGITAL DONOR RECRUITMENT

HLA TYPING TECHNOLOGY

For most individuals with access to the internet, it is second nature to look up an organisation’s website for information on its location, contact details, events etc. This however means that the website inadvertently becomes the face of the organisation and provides the opportunity to make a good impression from the first click of the mouse.

Early in 2018 it became apparent that the SABMR would have to start doing its own donor recruitment in order to maintain a viable donor database. Donor recruitment however, is rather resource hungry which meant that some out-of-the-box thinking would be required to ensure that daily operations go unhindered by the addition of such a large initiative.

Long gone are the days spent pouring over serologically typed patients and donors trying to figure out which broad antigenic group this particular “split” derives from. With the advent of Next Generation Sequencing (NGS) technology, the field of genetic typing has opened a whole new world of medical discovery, and no more so than in stem cell transplantation.

In June 2018, the SABMR launched its new website, www.sabmr.co.za, with individual areas specifically designed for patients, existing donors, new donor applicants as well as transplant physicians. The different areas are carefully constructed with the respective readers in mind, providing relevant information and electronic links to additional resources.

Thankfully, with her experience in customer relationship management software, SABMR employee Alicia Venter, was able to propose an IT solution that would fit the bill. Along with webmaster and web developer, Matt Royal, an online donor recruitment platform was designed that allows new applicants to register as new SABMR donors straight from the new website (launched in June 2018) using any electronic device such as a tablet or mobile phone.

“USER-FRIENDLY WEBSITE RECEIVES A GROWING AMOUNT OF TRAFFIC FROM ALL OVER THE WORLD” By pooling the expertise of Cape Townbased web designer, Terri Love, webmaster, Matt Royal, illustrator, Monique Mouissie and with the direction of SABMR employee, Alicia Venter, a dynamic and user-friendly website was compiled that receives a growing amount of traffic from all over the world.

The first two phases of the development were tested and launched onto the production platform with immense success. Through automation of communication, donor DNA kit tracking and application progress reporting the software minimises the use of multiple registry personnel spending hours managing individual applications, not to mention costs saved that would traditionally have been spent on public donor drives.

Although the SABMR has been making use of molecular HLA typing techniques for some time, the different loci used to match donors to patients were still typed individually at great cost. NGS on the other hand allows all loci on multiple donor and patient samples to be typed simultaneously at the highest possible resolution, reducing the time it takes to determine whether the proposed match is suitable or not. This in turns reduces the patient’s timeline to stem cell transplantation and ultimately improves the outcome of the treatment. In 2018, the SABMR started encouraging local transplant physicians to have their patients typed by NGS before requesting a preliminary search allowing for a more informative search report upfront. Since May 2018, the SABMR ensured that all mandatory patient and donor HLA verification typing is done by NGS. Furthermore, all donors, newly recruited by the SABMR, are typed by NGS, and in addition to HLA, their blood group and CCR5 status are included in their typing results.

25


GIVE A LIT TLE

SAVE

A LIFE


Special thanks to all our partners And all those who wish to remain anonymous

DOLPHIN BEACH HOTEL

GROUP

CITADEL PHILANTHROPY FOUNDATION

WILDNER FOUNDATION

SORBET CANAL WALK

HC ADAMSTEIN WILL TRUST

SHUTTLE KIDZ

DOLCE BAKERY

ASPEN

JULEKA4GOOD

MR PRICE

FLEMING FAMILY FOUNDATION

CAROLINE FINE FLOWERS

HENECK FAMILY FOUNDATION

ANN KREITZER

THE VICTOR DAITZ FOUNDATION


YOU COULD BE someone’s tomorrow REGISTER AS A BONE MARROW DONOR

ANY PERSON BETWEEN THE AGES OF 18 AND 45, WITH NO PRE-EXISTING HEALTH CONDITIONS AND WHO MEETS OUR ELIGIBILITY CRITERIA MAY REGISTER AS A DONOR.

DONATE FUNDS TO THE SABMR

VISIT SABMR.CO.ZA AND MAKE A FINANCIAL CONTRIBUTION BY CLICKING THE ‘DONATE’ BUTTON.

PO BOX 13353, MOWBRAY 7705 CAPE TOWN PHONE: 021 447 8638 EMAIL: ADMIN@SABMR.CO.ZA

WWW.SABMR.CO.ZA