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Pae Ora (Healthy Futures) Bill – Oral Submission

Jane wearing earphones while presenting via zoom

Late last year, we submitted on behalf of the New Zealand ovarian cancer community to recommend improvements to the Pae Ora (Healthy Futures) Bill.

New Zealand’s public health system is fragmented, inequitable and inconsistent. For some population groups, in particular Māori, Pacific peoples and people with disabilities, rare disorders and women, this results in poorer health compared to other groups in New Zealand.

The Pae Ora (Healthy Futures) Bill lays the foundation to transform our healthcare system to help all New Zealanders live longer and have the best possible quality of life.

The Bill’s purpose is to:

(a) protect, promote, and improve the health of all New Zealanders, 

(b) achieve equity by reducing health disparities among New Zealand’s population groups, in particular for Māori,

(c) build towards pae ora (healthy futures) for all New Zealanders.

The Bill provides a new legal framework for the health system, reforming some of the structures and organisations and provides for common principles and objectives to guide all entities to work together and ensure they are accountable for improving health outcomes.

Below is our accompanying oral submission.

Transcript:

Kia ora, my name is Jane Ludemann, and I am speaking on behalf of Cure Our Ovarian Cancer, representing the thousands of wāhine with ovarian cancer in New Zealand.

As you’ll have read, our submission covered three main areas:

  • The need for gender to be a strong focus, alongside other inequalities like Māori health,
  • The need for the system to consider and make accommodations for rare disorders,
  • The need for Pharmac to consider the broader health and social costs of their decisions. 

But I’m assuming you’ve read our submission, so today I would like to quickly take you through the challenges facing New Zealanders diagnosed with ovarian cancer, to help you understand the scope of the problem and why these things are hugely important – because this is what happens when none of those things are considered.

Ovarian cancer is the leading cause of gynaecological cancer death in New Zealand. Because it is not well publicised – indeed, even on the Ministry of Health’s website, awareness is very low. Many women delay presentation to their doctor because they’re unaware the symptoms could be something of concern.

Once they present to their doctor, if they are lucky they’re investigated straight away. Most women are not lucky. They’re sent home because we lack national guidelines, and there are barriers to investigations at the GP level. If you live in Manukau, you’re ten times more likely to be given a blood test for ovarian cancer than if you live on the North Shore of Auckland. Ten Times.

The next test for ovarian cancer is an ultrasound. Most DHBs do not refer to the typical presentation of ovarian cancer in their written guidelines for accepting ultrasound referrals, despite this being the leading cause of gynaecological cancer death. If your blood test is abnormal, maybe you’re fast-tracked and seen within two weeks. Or maybe you’re unlucky enough to live in the DHB that takes five months.

If you’re the 1 in 4 women with ovarian cancer who have a normal blood test – which is more common in early ovarian cancer and younger women – you might be seen in weeks or months or told to wait until your cancer is so advanced it becomes an acute emergency. Indeed in New Zealand, 34% of women are diagnosed this way.

The UK is implementing virtual one-stop rapid diagnostic centres to improve their rates. It’s not even on New Zealand’s radar.

Once you are in the hospital system, you might have surgery the next day. However, you might fall into the unlucky box where it could be cancer or not – and hospital resources mean that you are deprioritised for months. We have heard of people waiting a year, with surgeons fighting on the phone for operating space, and the very unfortunate reality is, if they have cancer, that delay has devastating implications. 

This particularly concerns us with Covid, where just today we read in the news of Canadian women with ovarian cancer who are unable to access surgery due to pressures on their health system. Timely diagnosis and surgery are the most important determinants after stage, in the survival of ovarian cancer.

You have your surgery and are cut from above your belly button to your pubis, understandably this really affects function. The physiotherapy you need to have to be able to get back to work, and caring for dependents is not funded. Thankfully, you’ll probably be able to get some free counselling to process all the trauma but what about all that extra time you might have had, perhaps your entire life, if there weren’t so many delays? Make no mistake, these delays kill.

Your treatment is funded. But because ovarian cancer has had very little research, most women have their cancer come back. And when it does, New Zealanders lack the options of other countries. If you’re lucky, maybe the drug company will give it to you for free. But you still have to pay GST on the list price which can amount to thousands of dollars a month. Prohibitive for most. If the drug needs to be administered by a hospital you need to pay that too. All of which incurs tax that goes to the government that is not funding your treatment.

And when the options are low, there are usually little to no clinical trials. Clinical trials return a 5.8 times economic and health benefit relative to every dollar spent. Despite this DHBs require everything to be funded externally by the trial. As an example, if you aren’t on a clinical trial – the DHB pays for your scan. If you’re on a clinical trial – which delivers immense benefits, the DHB won’t pay for your scan.

This is particularly an issue for ovarian cancer, which has little research funding as a female cancer that has historically carried some stigma, with all the additional challenges of most types of ovarian cancer being rare disorders – despite ovarian cancer not being rare itself. Most trials are funded by non-profits, and clinical research groups rather than wealthy pharmaceutical companies. It can be too expensive for them to bring the trial to New Zealand when countries like Australia recognise the immense benefits and partially subsidise the costs of participation.

To be honest, it can be very difficult to reconcile the journey of a woman with ovarian cancer in New Zealand. It’s like we are in this alternate reality to many other common cancers. Just 1 in 3 women survive five years in New Zealand. We can do so much better, and we hope you will take this feedback on board.

OCFNZ started as Cure Our Ovarian Cancer in 2018, with a focus on low-grade serous ovarian cancer. In 2020, we expanded our focus to include all ovarian cancer and, in 2024, we changed our name to the Ovarian Cancer Foundation New Zealand.