Advocates railing against health inequities

Jane Ludemann, founder of the Cure Our Ovarian Cancer Charitable Trust (left), briefs Parliament...
Jane Ludemann, founder of the Cure Our Ovarian Cancer Charitable Trust (left), briefs Parliament’s health select committee, supported by trustee Elizabeth Pennington. PHOTO: PARLIAMENT
There are many things that the South is short of in the health sector, but one thing the region has no dearth of is activists prepared to stand up and fight Otago and Southland’s corner.

The campaign to keep neurosurgery in the South is well-remembered, and that spirit of activism has been shown to be alive and well recently as the Dunedin City Council and Otago Daily Times ran campaigns to oppose cut-backs in plans for the new Dunedin hospital.

Then, of course, there are Blair and Melissa Vining and the ongoing struggle to ensure adequate cancer care is provided for southerners . . . of them, more shortly.

But Wednesday was a chance for another determined southerner to have her time in the sun.

Dunedin woman Jane Ludemann was diagnosed with a rare form of ovarian cancer in 2017, a discovery which surprised her doctors — symptoms in women as young as Ms Ludemann can usually be attributed to other factors.

In an inspirational and commendable example of turning a negative into a positive, a year after the devastating news that she might only have a few years left to live, Ms Ludemann founded the Cure Our Ovarian Cancer Charitable Trust. The organisation publishes an annual report on ovarian cancer trends, supports and funds research for the so-called "low-grade serous cancers", and provides information and support for those dealing with ovarian cancer.

Don’t just take my word for it that the trust does a tremendous job: in 2021 it received a World Ovarian Cancer Coalition Impact Award.

So, when Ms Ludemann goes to Wellington — as she did this week — people listen.

She and fellow trustee Elizabeth Pennington appeared before the health select committee and struck at the nub of the issue within one minute: "the women’s health strategy is a really promising start to addressing the systemic biases in health but the reality is that women with ovarian cancer can’t wait — they are dying now."

Ovarian cancer is New Zealand’s leading gynaecological cancer and the least survivable one — it kills more women than all other gynaecological cancers combined, and just 36% of women survive more than five years. This is largely because it is often misdiagnosed — Ms Ludemann’s cancer was missed for two years — or not detected at all.

Patients can wait many months before being accepted for a diagnostic ultrasound. If cancer is found they may be "lucky" like Ms Ludemann — her current treatment is funded and seemingly working. If it fails, what are considered to be the three next-best treatment options are unfunded.

"This is personal but I am not here for me," she said.

"I am here because the only thing that is exceptional about my story is that six years later I am still here to use my voice when most women diagnosed at the same time as me are dead."

Ms Ludemann was at Parliament to speak to the trust’s petition, which calls for urgent improvements to the diagnosis, treatment and research of ovarian cancer which are needed to help save women’s lives.

Newer treatments have lingered on Pharmac’s waiting list for more than a decade, despite being funded in countries such as Australia. Other, louder diseases out-compete ovarian cancer in the clamour to secure Pharmac funding.

And in the meantime, people die of ovarian cancer — more than 500 of them since Ms Ludemann’s petition was presented to Parliament last year.

The next submitters on the petition, Te Aho o Te Kahu the Cancer Control Agency, had an almighty act to follow.

If it had repeated its written submission from December — that the agency did plan to improve ovarian cancer detection, diagnosis, and treatment but not develop specific ovarian cancer guidelines — that would have flown like the proverbial lead balloon.

Instead, the agency said that it was developing "optimal care pathways" and while ovarian cancer would not be one of the first cabs off the rank, it would be addressed in 2024.

If it does not, Parliament will assuredly be hearing from the redoubtable Jane Ludemann again.

One thing which might have given the committee pause for thought, had it seen it, was the front page of the previous Friday’s Otago Daily Times, in which Melissa Vining, widow of bowel cancer patient Blair Vining, made scathing criticism of Te Whatu Ora Health New Zealand for its incorrect public statement that 90% of southern cancer patients are being treated on time.

As Mrs Vining pointed out, this was nonsense and the actual figure was closer to 70%, something which Te Whatu Ora recognised and apologised for, saying it had inadvertently referred to a single cancer statistic which is hitting the 90% target.

"Unfortunately Te Whatu Ora is not being transparent and honest with what they’re presenting, which is creating confusion and concern for the public," Mrs Vining said.

Now there are lies, damned lies and statistics, and the public is entitled to question the validity of any official numbers coming out of the health sector at the moment. Also on Wednesday, Health Minister Ayesha Verrall had to take the embarrassing walk back to the debating chamber to let the House know that her staff had incorrectly told Te Whatu Ora not to release some provisional data on a certain date.

But the numbers that Mrs Vining and Ms Ludemann are working with are real and daunting: southerners are dying weekly, if not daily, from cancer.

Tragically, scandalously, a significant percentage of those people will die deaths which might be preventable.

Not everyone can, or wants to, rail publicly against such unfairness, but the South is lucky to have people such as Melissa Vining and Jane Ludemann, who will.