Auckland clinical researcher diagnosed with multiple myeloma while studying same disease

In the “cruellest twist of fate”, a clinical scientist was diagnosed with multiple myeloma; the very disease she was researching.

Jo Holland, 63, has been in clinical research for 18 years. She had been working on two trials for the treatment of multiple myeloma when she received an “out of the blue phone call” from her doctor, following a routine blood test.

“It was shockingly surreal to be diagnosed with the same condition as I was researching,” she said.

Multiple myeloma is a common incurable blood cancer which, with the right medication, can be survived for years. However, funded medications are limited in New Zealand.

Jo Holland is a clinical researcher and has been diagnosed with the same cancer she was studying. Photo / Alex Burton

Holland’s understanding of her diagnosis was immediate and intimate - having spent hundreds of hours researching the disease and bearing witness to its impact on patients.

Her treatment started in 2019, with the standard myeloma chemotherapy available in New Zealand: cyclophosphamide, valcade and dexamethasone. All of these proved unsuccessful.

Holland eventually underwent a stem cell transplant. After the “physically and emotionally harrowing” process, it didn’t work.

“I was devastated,” she said.

Holland was told she would be on some form of chemotherapy for the rest of her life. For the past two years, she has been - until her relapse six weeks ago.

Jo Holland needs daratumumab; the same form of treatment she had been studying at the time of her diagnosis, to extend her life. Photo / Alex Burton

Her haematologist said to extend her life, she needs daratumumab; the same form of treatment she had been studying at the time of her diagnosis. She knew it would be a game-changer for her prognosis. She also knew it isn’t funded in New Zealand. The first year of the medicine costs about $223,000.

Up until this year, Holland had kept her diagnosis personal.

“I’ve always been a private person, telling only family and trusted friends that I have blood cancer, trying to keep up the pretence of being normal,” she said.

Now, she’s been forced to make her situation public.

“I reluctantly agreed for my friends to set up a Givealittle campaign,” she said.

Holland’s good friend, Janine Smillie started the Givealittle, where she referred to Holland’s diagnosis as “the cruellest twist of fate”.

“When Jo shared her diagnosis with us, my heart just sank,” she said.

“While having knowledge is essential, it also means there is no escaping knowing about the harsh realities of what this disease presents.”

Both Smillie and Holland have had to come to terms with her cancer being in the public arena.

“This means being more transparent about having cancer than I’m comfortable with,” Holland said.

Multiple Myeloma NZ’s Nichola Oakenfull said this is the reality for patients across the country; turning to Givealittle to fund treatments their lives depend on.

“People’s lives are needlessly being cut short because they aren’t getting the medication they need,” she said.

A myeloma patient herself, Oakenfull has witnessed this firsthand.

“I’ve had a number of myeloma friends that have died; that’s the reality,” she said.

Last month, Pharmac expanded its treatment options for myeloma patients, widening access to lenalidomide and funding pomalidomide.

However, Oakenfull said these treatments “need to be taken in combination with daratumumab”.

Pharmac’s senior therapeutic group manager Logan Hayes told the Herald they “understand there are other treatments like daratumumab that the multiple myeloma community would also like to see funded”.

Clinical researcher Jo Holland. Photo / Alex Burton

“At this stage we are unable to confirm if or when it could be progressed for funding,” Hayes said.

Haematologist Roger Tiedeman, who specialises in multiple myeloma, said Pharmac won’t fund daratumumab because they aren’t sufficiently funded by the Government.

“Pharmac is sort of stuck with funding the oldest and most cost-efficient medicines, but isn’t really able to fund modern medicines,” he said.

Associate Health Minister David Seymour said he recognises it is a matter of huge importance to New Zealanders.

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“The Government has provided the largest ever medicines budget, committing an additional $1.8 billion to fix a fiscal cliff left by the previous Government, and providing a $604 million uplift to ensure more Kiwis can access life-changing medicines,” Seymour said.

Despite this, daratumumab is still not funded, meaning, for people like Holland, life could be shortened significantly.

Tiedeman said it is “devastating” when he knows what drugs patients need but they just can’t access them.

He said daratumumab is not a “new” drug. It has been around for almost a decade and is the standard of care in 49 other countries, including Australia, Slovenia and Brazil.

Throughout her medical career and life, Holland has tried to remain hopeful - a mindset she is struggling to maintain.

“Now the system is leaving me without hope. It’s a confronting and lonely state of mind,” she said.

“To be given the same chance as thousands of patients in almost 50 other countries would be a dream come true.”

Katie Oliver is a Christchurch-based Multimedia Journalist and breaking news reporter.