posting a letter to the NZ Prime Minister and MPs calling for ovarian cancer action

A call for action

This Ovarian Cancer Awareness Month Cure Our Ovarian Cancer has joined forces with New Zealand advocacy groups: New Zealand Ovarian Cancer Awareness, Talk Peach Gynaecological Cancer Foundation and the New Zealand Gynaecological Cancer Foundation to send a message to Members of Parliament that the current ovarian cancer situation in NZ is unacceptable.

Every 48 hours a woman dies of ovarian cancer. It kills more NZ women every year than melanoma, more women than our national road toll… yet receives much less attention. It’s not ok.

We’ve identified three areas that need urgent attention – which are particularly relevant to women with our cancer sub-type, low-grade serous ovarian cancer.

Earlier diagnosis

Low-grade serous cancer women tend to be younger which is a risk factor for delayed diagnosis.

Access to drugs

Women overseas with low-grade serous carcinoma sometimes are given Avastin to slow their cancer. This drug is approved for ovarian cancer generally and funded in the UK and Australia but not NZ.

Research

It’s hard to get research for rarer ovarian cancers, but when the government has only funded 3 ovarian cancer research projects in the past 10 years, it’s impossible. Too many women are dying. We need research urgently.  In 2019, thanks to generous NZ donors, Cure Our Ovarian Cancer was able to fund the first ever low-grade serous ovarian cancer research project in NZ. Dedicated research funding specific for ovarian cancer will make it harder to overlook our subtype.

Low-grade serous carcinoma isn’t a listed indication for any medications anywhere. Women can access older medications that were broadly licensed for ovarian cancer. But newer medications (like PARP inhibitors) are restricted to specific subtypes. Globally there are currently six clinical trials testing promising treatments for low-grade serous carcinoma that NZ women cannot currently access. Funding two dedicated national gynaecological clinical trials nurses would help increase the availability of overseas clinical trials in NZ.

How to help

Support research

When you donate or fundraise for Cure Our Ovarian Cancer 100% (less bank fees) goes directly to research to help women live longer

Share the symptoms

Download our NZ symptoms awareness poster, share it on social media, and print a copy off for your work.

Sign the Pharmac Petition

http://sign4life.nz calling for an increase in Pharmac’s funding

Contact your MP

Ask your MP what they are doing to help women with ovarian cancer be diagnosed earlier, access treatments and live longer through research.

Ovarian Cancer Letter to Parliament

01/02/2020

Parliament

Wellington

Dear Member of Parliament

Ovarian Cancer Awareness Month, February 2020

It’s Ovarian Cancer Awareness month this February, and too many women with ovarian cancer are dying waiting to be heard.

In New Zealand ovarian cancer kills more women every year than melanoma1, and our national road toll2 yet the Ministry of Health doesn’t even list it on their “Your Health/Conditions and Treatments” section of their website – nor under the “Cancer” sub-section3.

Last year a research study was published showing over a decade, for all stages, the survival of ovarian cancer had improved less in New Zealand than Australia and the US4. In fact, a subsequent Christchurch study found survival rates over a decade for advanced ovarian cancers hadn’t improved at all5.

The relative 5 year survival of breast cancer is 87%, compared to 39% for ovarian cancer6. In the past ten years, for every woman who dies, the Health Research Council spends three times as much on breast cancer research compared to ovarian cancer research. In fact in the past ten years just three ovarian cancer studies have been funded. 78% of the total research funding awarded to ovarian cancer research was due to a combined breast and ovarian cancer study – looking into a mutation relevant to less than 10% of ovarian cancers. In contrast the same study accounted for only 8% of the total breast cancer research funded7.

There are three areas for improvement we have identified:

  1. Earlier diagnosis

Research from the UK and US indicates that as many as half of all women take 12 months or longer to receive a correct diagnosis8 and 80% of women with ovarian cancer will be initially misdiagnosed by their doctors9. Earlier diagnosis can significantly increase women’s chances of long term survival.

  • Education: Women need to be educated on the symptoms of ovarian cancer so they present to their doctor earlier. We believe it would be very easy and cost effective to incorporate education on the symptoms of ovarian cancer, and other gynaecological cancers, at the time of a cervical smear test (a smear does not detect ovarian cancer). Women dying of ovarian cancer shouldn’t hold all the responsibility for educating other women – the Scottish10 and Australian11 governments run national promotion initiatives. Our Health Promotions Agency should too.
  • Improved access to testing: Because of high misdiagnosis rates, doctors need to test for ovarian cancer if a woman has symptoms. While there is no screening test for ovarian cancer (that is a test for women with no symptoms), a combined ca-125 blood test and transvaginal ultrasound is a very accurate method of detecting ovarian cancer in women with symptoms. Several studies have found detection rates in this context to be similar to those of our existing mammogram screening program12,13,14. Yet despite the fact ovarian cancer diagnostic testing carries less risk than a mammogram; AND that the cost of both tests is similar, anecdotally NZ women with ovarian cancer symptoms face significant barriers to accessing the necessary tests15. Every pregnant woman gets a publicly funded ultrasound. Ovarian cancer women deserve the same timely access.
  1. Funding of medications

We were pleased to see Pharmac agreeing to fund Olaparib for women with BRCA1/2 mutations with high-grade serous ovarian cancer. Unfortunately other treatments that form part of the standard of care overseas for women such as Avastin remain unfunded. Women shouldn’t have to choose between bankrupting families or spending more time with them15.

  1. More research
  • Clinical trial accessibility: Participation in clinical trials allows women to access the most up to date treatments available. According to the Australia New Zealand Clinical Trials Registry since 2005 Australian women have had access to 139 ovarian cancer clinical trials compared to just 22 in New Zealand16. This is particularly important for women with rarer ovarian cancers. For example, low-grade serous carcinoma (which accounts for 2-5% of diagnoses, typically affects younger women and is frequently incurable) isn’t a listed indication for any medications anywhere. But globally there are currently six clinical trials testing promising treatments that NZ women cannot currently access. Funding two dedicated national gynaecological clinical trials nurses would help increase the availability of overseas clinical trials in NZ.
  • Dedicated funding for ovarian cancer research: Ovarian cancer has been overlooked for too long. Significant improvements in survival cannot be made without advances in treatment and screening. The disparity of funding through the Health Research Council shows the current method is not working. We applaud the announcement of the Australian government last year for targeted research funding – allocating an additional $35 million ($20 million for ovarian cancer17 and a further $15 million for gynaecological clinical trials18). We call on the New Zealand government to urgently commit $10 million for ovarian cancer specific research – and note this is just 0.7% of what has been committed to improve road safety19.

If you have any questions or would like any further information, please don’t hesitate to get in touch.

Yours sincerely,

Cure Our Ovarian Cancer
Talk Peach Gynaecological Awareness
Ovarian Cancer Awareness NZ
New Zealand Gynaecological Foundation

References:

  1. Ministry of Health. Cancer: New registrations and deaths 2013. Wellington: Ministry of Health. 2016
  2. https://www.transport.govt.nz/mot-resources/road-safety-resources/road-deaths/ 26/01/2020.
  3. https://www.health.govt.nz/your-health/conditions-and-treatments and https://www.health.govt.nz/your-health/conditions-and-treatments/diseases-and-illnesses/cancer 27/01/2020
  4. Arnold M, Rutherford M, Bardot A et al. Progress in cancer survival, mortality, and incidence in seven high-income countries 1995–2014 (ICBP SURVMARK-2): a population-based study. Lancet Oncol 2019; 20: 1493–505
  5. Yeoh S, Simcock B, Innes C et al. Trends in the overall survival rates in women with advanced ovarian cancer in a single tertiary centre in New Zealand. ANZJOG. Oct 2019; 59(6): 861-866
  6. https://www.health.govt.nz/publication/cancer-patient-survival-1994-2011 27/01/2020
  7. https://www.hrc.govt.nz/resources/research-repository
  8. Bankhead CR, Collins C, Stokes-Lampard H et al. Identifying symptoms of ovarian cancer: a qualitative and quantitative study. BJOG. 2008; 115(8): 1008-14.
  9. Goff BA, Mandel L, Muntz HG et al. Ovarian Carcinoma Diagnosis. Cancer. 2000; 89(10): 2068-75.
  10. https://www.getcheckedearly.org/ovarian-cancer 27/01/2020
  11. https://ovarian-cancer.canceraustralia.gov.au/home 27/01/2020
  12. Gilbert L, Basso O, Sampaslis J et al. Assessment of symptomatic women for early diagnosis of ovarian cancer: results from the prospective DOvE pilot project. Lancet Oncol. 2012; 13(3): 285-91.
  13. Rossing MA, Wicklund KG, Cushing-Haugen KL, Weiss NS. Predictive Value of Symptoms for Early Detection of Ovarian Cancer. J Natl Cancer Inst. 2010; 102(4): 222-9.
  14. A Richardson, P Graham, T Brown et al. Breast cancer detection rates, and standardised detection ratios for prevalence screening in the New Zealand breast cancer screening programme. J Med Screen 2004;11:65–69
  15. https://www.stuff.co.nz/national/health/110606249/kiwi-women-fighting-for-early-ovarian-cancer-diagnosis-and-access-to-drugs and https://www.stuff.co.nz/national/health/98883954/were-comfortable-talking-about-breast-cancer-but-ovarian-cancer-remains-a-forgotten-disease
  16. https://www.anzctr.org.au/ 27/01/2020
  17. https://www.health.gov.au/ministers/the-hon-greg-hunt-mp/media/20-million-for-ovarian-cancer-research (27/01/2020)
  18. https://www.health.gov.au/news/new-funding-for-clinical-trials-to-combat-reproductive-cancers (27/01/2020)
  19. https://www.beehive.govt.nz/release/14-billion-save-lives-our-roads (27/01/2020)
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