Rotorua pair “lead the charge” to educate Māori about blood donation
Rotorua woman Tae and her support person Jono know first-hand how important blood donors are. They are spreading the word to educate their own whanau and hapu at home in Rotorua, and think it’s about time more Māori stepped up to donate blood.
Dairy farmer Tae was on her way out of the cow shed one day when she discovered she didn’t have the strength to walk. It was July 2015 when Tae realised something was definitely not right. She noticed small changes at first; the toothache that hung around too long and the cold that wouldn’t go away, but being a bit of a tough nut it took a long time to admit that perhaps she should see a doctor. The day she realised she couldn’t walk any further was when she finally admitted something serious was wrong.
Tae was diagnosed with Acute Myeloid Leukaemia (AML), a type of cancer that prevented her bone marrow from producing enough normal blood cells to meet her body’s needs. Diagnosis was only the first of many challenges for Tae. In the past 12 months she has undergone several rounds of chemotherapy, countless blood transfusions, needed over 30 units of platelets and received a bone marrow transplant.
Tae is luckier than most. Her younger brother was found to be a perfect bone marrow match! As a fit and healthy national Kapa Haka champion with a high stem cell count and a perfect genetic match, he was a great candidate to be her donor for the transplant. However, for many Māori for whom a bone marrow transplant is the best option, the struggle to find a suitable donor is not successful. Having more Māori bone marrow donors will make a difference.
To become a bone marrow donor you must first be a blood donor with New Zealand Blood Service (NZBS). Eligible donors must also pass a medical check before they are able to sign up to the New Zealand Bone Marrow Donor Registry (NZBMDR).
Why are Tae and Jono encouraging more Māori to become donors? Ancestry plays a big role in the compatibility of bone marrow and sometimes also platelet transfusions. Patients who need platelets or a bone marrow transplant are often more likely to match with a donor who has the same ethnicity. European-New Zealanders who need a transplant have access to a database of millions of European donors living in Europe or North America, compared to only a few thousand potential donors for Māori and Pacific Islanders. NZ Blood Service provides the world’s largest database of Māori bone marrow donors. The donors are not often asked to donate bone marrow, but when they are, they make a huge difference for the person receiving the marrow.
Tae’s support person Jono thinks the problem with fellow Māoris’ unwillingness to be donors for whole blood and bone marrow is a lack of understanding of the importance of ancestry to provide donors to treat illnesses like leukaemia. Each donation really can be the difference between life and death for the recipient.
“The question we should be asking is: why not?” says Jono. “Why aren’t our people donating?”
“It took a lot of time to explain to friends and family that these days with all the science involved, (and bone marrow transplants possible) there is a high chance of recovery,” the pair say. “We met people who are 150 days post (stem cell) transplant living normal lives. Success means the stigma went away and people started to understand that you can come back from this.”
During her treatment to get rid of the leukaemia, Tae needed a lot of platelet transfusions to prevent or stop bleeding. Despite the ease of finding a bone marrow match, it wasn’t all smooth sailing for Tae who also discovered she has HLA antibodies. HLA is a protein located on the white blood cells, and on platelets and other tissues in our body. These proteins play an important part in the way our immune system works. Unfortunately, these antibodies caused transfused platelets from many blood donors to be destroyed rapidly. Many more platelet transfusions were needed and frequently it was just not possible to keep up the supply from people who were a good match.
The small numbers of blood donors, and Māori blood donors in particular, who shared the same HLA types meant there were times when no matching platelets could be found for Tae. She was only able to receive the nearest match available. In these instances her platelets were not increased by the transfusion and she was at risk of further bleeding.
Just as things were looking up for Tae, having found a bone marrow donor who was an identical match, there was another problem. She discovered that she had been born with only one kidney. Doctors were initially hesitant to perform Tae’s bone marrow transplant, fearing there were more risks because of a missing kidney. But these fears were soon put aside and Tae can now proudly claim the title of first Māori woman to have a bone marrow transplant with only one kidney!
Tae is feeling much better and now only has to visit Auckland once a month for a check-up. This leaves Tae and Jono with more time to educate people at home in Rotorua about the importance of being a blood donor. After spending time talking about donating blood and bone marrow, they have found many people, including senior members of their whanau and hapu, to be willing to help in any way they can.
“It’s time to get serious about influencing the Māori community [to donate blood]; with grace, but also with honesty,” says Jono. “Someone’s got to lead the charge.”
If your ancestors were Māori, Pacific Island or any other NZ ethnic minority group, please consider becoming a blood donor. If you already give blood, ask about joining the Bone Marrow Registry the next time you donate. With your support, more patients who need a bone marrow transplant will be able to access the treatment they so desperately need.