Wānaka resident and multiple myeloma blood cancer patient Emma Holden, 36, will soon travel to Shanghai, China for CAR T-cell therapy, with her husband George.
Wānaka resident and multiple myeloma blood cancer patient Emma Holden, 36, will soon travel to Shanghai, China for CAR T-cell therapy, with her husband George.
Wānaka resident and multiple myeloma blood cancer patient Emma Holden, 36, will soon travel to Shanghai, China for cutting-edge treatment.
The CAR T-cell therapy involves the collection of a patient’s immune cells, which are then genetically modified to recognise and kill their cancer, then given back to them as a “living drug”.
Leukaemia and Blood Cancer NZ chief executive Tim Edmonds says innovations like CAR T-cell therapy, “are rapidly transforming myeloma from a terminal illness to a chronic condition that can be effectively managed”.
At 36 years old Emma Holden has run out of local treatment options for her blood cancer, and will soon fly to China to have her immune cells genetically modified to kill the disease.
Holden and her husband George have reluctantly gone public with her previously private fight againstmultiple myeloma, a common type of blood cancer, because they had no other way to meet the financial burden of offshore treatment.
A Givealittle page has in a single month raised the $400,000 needed for the CAR T-cell therapy at a private hospital in Shanghai.
“It won’t cure me, but it’s the best chance for me to be in a longer remission - to extend my life,” Holden told the Herald.
Holden was 30 and living in Melbourne in 2019 when she attributed worsening aches to gym sessions. Physiotherapy didn’t help, and eventually an X-ray revealed numerous bone lesions - a tell-tale symptom of multiple myeloma, a common and incurable blood cancer.
“People with myeloma are usually aged 60 or older,” Holden said.
“The medical staff were quite shocked to be diagnosing someone so young.”
Cancer is known to Holden’s family - her dad Tom died from liver cancer at the age of 46, when she was 19, and her siblings 17 and 11. She had always exercised and eaten well, “but you quickly accept that cancer doesn’t discriminate”.
Emma Holden was only 30 when diagnosed with multiple myeloma, a common blood cancer. Most people are much older when struck by the disease.
After her diagnosis she and George moved home. Their choice of Wānaka reflected their love of the outdoors.
Myeloma can be kept below detectable levels (remission) for years by treatment and medicines. The cancer eventually returns, more aggressively, and when that happens a patient switches to another option.
Holden began chemotherapy, before an autologous bone marrow transplant, in which healthy stem cells (special cells that can make copies of themselves) were removed from her bone marrow, and stored.
She was then hit with high-dose chemotherapy, to kill as much cancer as possible. That destroyed healthy bone marrow, too, and her stored stem cells were returned to her blood to regenerate what was sacrificed. That gruelling process provided only a couple months in remission.
Holden went on a drug, daratumumab, which for years has been standard of care in most developed countries but isn’t funded in New Zealand, despite an outcry from clinicians and patients.
Hers was provided as part of a clinical trial.
She then underwent another bone marrow transplant, this time with stem cells given by a 24-year-old man in Germany.
That gave seven months of remission. Radiation followed, and then another clinical trial, on a new drug, elranatamab, provided Holden a wonderful 12 months of high quality, normal life - save for the weekly flight to Auckland for administration.
Throughout most of her treatment - and fractures, pneumonia, shingles and other health problems caused by myeloma - Holden has kept working.
She and George met at chef school in 2010, and share a passion for food - Holden works in the food manufacturing industry, and supports her husband to run their busy restaurant, Muttonbird.
Wānaka resident and multiple myeloma blood cancer patient Emma Holden, 36, (centre) with her siblings Lucy Holden and James Holden.
The elranatamab stopped working in June 2024. Myeloma patients in comparable countries overseas have a growing number of promising and publicly-funded treatments, but Holden and others in New Zealand have fewer lines of defence.
She has no real treatments available here, but this year completed intensive chemotherapy and radiation in Dunedin Hospital, to buy more time.
“My myeloma is not stable. I have been off any good treatment since June and it is definitely very active, and very angry.”
Chimeric antigen receptor (CAR) T-cell therapy involves the collection of a patient’s immune cells - taken from a person’s blood using a special machine - which are frozen and then genetically modified to recognise and kill their cancer, and then infused back into the patient’s blood. It’s now used overseas for types of blood cancers including relapsed lymphoma, leukaemia and myeloma.
Malaghan researchers, patients, clinicians and support groups hope the work will help lead to CAR T-cell therapy eventually being available in New Zealand. In Australia, CAR T-cell therapy is funded for qualifying patients with lymphoma, and is anticipated to be available publicly for people with myeloma later this year.
Holden has held online meetings with specialists from Shanghai Sino United Hospital, and will likely make the journey with George in the next month or two.
That’s possible because of the support of their community - the Givealittle hit $100,000 raised after only four hours, $200,000 after two days, and is now at their $400,000 target. More money will be needed for travel and other costs (and to cover the 5% fee taken by Givealittle).
“It shows there are a lot of good people out there that want to support and want to give hope,” Holden said.
Emma Holden has undergone years of treatment for her blood cancer. She is now out of proper treatment options in New Zealand, and will travel to China for CAR T-cell therapy.
Their friends in Wānaka and throughout New Zealand have held raffles and online auctions of donated goods and services. People in Holden’s hometown of Gisborne have fundraised through a shearing competition and quiz night. Hospitality mates in Melbourne are soon to host a fundraising dinner.
The support is “incredibly overwhelming”, Holden said, but putting her hand out hasn’t been comfortable, and has made her situation more public.
“I never had treatment in Wānaka - it was always going to Christchurch, Dunedin or Auckland - so Wānaka was our safe space where we could kind of forget and just live our normal life. Now everyone is asking how we are doing, and have lots of questions.”
Every year about 400 Kiwis are diagnosed with multiple myeloma. Holden wants to raise awareness about the lack of funded treatments in New Zealand, including daratumumab, which costs more than $100,000 a year privately.
Emma Holden and her husband George reluctantly made her health battle public in a desperate bid to raise funds for overseas treatment that could significantly prolong her life.
Barbara Horne, chair of the patient group Myeloma NZ, said haematologists here are often unable to run clinical trials of new drugs, because participants need to have already received what’s considered standard treatment internationally, including daratumumab.
“Having access to this medicine would help reduce the need for patients to travel overseas for treatment, and it would give clinicians more options to treat their patients.”
Leukaemia and Blood Cancer NZ chief executive Tim Edmonds said innovations like CAR T-cell therapy, “are rapidly transforming myeloma from a terminal illness to a chronic condition that can be effectively managed”.
“New Zealand is not harnessing the benefits of these advancements, and our low investment in medicines is disproportionate to that of similar sized OECD economies. As a result, patients are increasingly being forced overseas to access life-saving therapies.
“The Government and Pharmac needs to step up and right-size medicine investment so that Kiwis can receive world-class cancer treatment at home.”
