Cancer patient's stem cell transplant struggle highlights need for more donors

Sarah Taylor was diagnosed with a myelodysplastic syndrome, a rare form of blood cancer. (702 ABC Sydney: Isabella Michie) Link copiedShareShare articleIn December last year, Sarah Taylor started feeling fatigued. She suffered nosebleeds and experienced prolonged periods. As the months went on, her symptoms worsened, forcing her to quit her job and leaving her unable to get out of bed. After multiple misdiagnoses, she was finally diagnosed with a rare blood cancer and told her only solution was a stem cell transplant. Sarah Taylor had to quit her job and is now reliant on the Disability Support Pension. (702 ABC Sydney: Isabella Michie) "I can't just live a normal life as a 28-year-old. I can't do anything really because everything is too risky for me," she said. Now she receives blood and platelet transfusions almost daily to keep her alive. Ms Taylor is one of approximately 1,200 Australians urgently waiting for a life-saving stem cell transplant, according to the Leukaemia Foundation. Australia's donor registry has dwindled, with the number of registrants declining from about 173,000 in 2009 to 165,000 in 2024. "The registry in Australia is pretty pathetic," Leukaemia Foundation chief executive Chris Tanti said. "We don't have a really great campaign to engage people in the donation." The ideal age for a bone marrow donor is between 18 and 25 years old; however, only 1.2 per cent of Australians within that age range are registered. Australia's registry is "ridiculously small" compared to other nations such as Germany, which has 22 per cent of 18 to 35 year olds registered, Mr Tanti said. "There isn't a way of driving donors in this country. We're terrible at it. We are terrible at collecting. We're terrible at raising awareness." Ms Taylor was diagnosed with myelodysplastic syndrome (MDS), a group of blood cancers that affects the production of normal blood cells. In February, she was told her platelet infusions weren't enough and she would need a stem cell transplant. The process of waiting for a transplant has made her feel "very stressed". None of Ms Taylor's family members were suitable for donation, so her medical team turned to the volunteer donor registry. Sarah Taylor says testing found family members "have a few genetic mutations", which meant none were a "real proper" match. (702 ABC Sydney: Isabella Michie) Of the three potential donors, only one was a 100 per cent match, she said. But Ms Taylor said her doctors told her the donor travelled to countries with a high rate of malaria, potentially putting her at risk of infection. "[I am] terrified. Absolutely terrified. Knowing my body has no neutrophils [white blood cells]. I don't have anything to keep me from fighting off any infections," she said. "So if I do contract it, it's going to be an even longer battle." Sarah Taylor's stem cell transplant had previously been delayed due to a lung infection. (702 ABC Sydney: Isabella Michie) A spokesperson from Western Sydney Local Health District told the ABC in a statement staff were continuing to examine Ms Taylor's treatment options. "Stem cell donors are carefully selected to ensure a close match for the patient, and cells are tested to ensure they are safe to use," it said. "We are continuing to provide care for Ms Taylor and discussions about her treatment options are ongoing." Ms Taylor is now booked to receive her transplant this week. Australia is heavily reliant on other nations for donations, with eight out of 10 patients receiving a transplant from overseas. "We generally look to Germany for donors because they have a reasonable system," Mr Tanti said. "Their online registration process is incredibly easy, they focus heavily on younger donors through university students, high school graduates, sporting clubs, festivals and workplaces where young people flock." Sarah Taylor says before her illness, she had no awareness of the need for stem cell donors. (702 ABC Sydney: Isabella Michie) Unlike Germany, which maintains one of the world's largest and best-funded registries, Australia's registry operates with far more limited resources. Ethnicity is a key factor in a patient finding a viable transplant; for countries as diverse as Australia, this presents a problem, Mr Tanti said. "First Nations people, they are not going to get a match in Germany, they're just not. So we rely on Pacific Islanders, we rely on local people to make that contribution." The registry must grow to at least 10 per cent of 18 to 35 year olds to serve the needs of Australia's diverse cultural community and lessen the reliance on overseas donors, Mr Tanti said. "Other countries seem to be able to do it. I don't know why we can't do it," he said. Mr Tanti believes Australia's low registry rate comes down to two major factors: a lack of awareness and education of the process. There is a common misconception that donating stem cells is painful and time-consuming, Mr Tanti said. In 90

Cancer patient's stem cell transplant struggle highlights need for more donors

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