Sign to save lives

17/02/2021

Last night I saw a tweet from a woman saying she had just lost a beautiful friend to ovarian cancer.

Then I saw this one:

I understand and am sympathetic to the concern about conversion therapy but how can a petition on that issue that will affect a very few people gain so much more support than this one that affects so many?

Petition request

That the House of Representatives urge the Government to support the development of ovarian cancer (OC) awareness/education campaigns for the public and health professionals; ensure women with OC symptoms have timely access to testing; improve access to approved therapies and clinical trials; and dedicate funding to OC research.

Petition reason

Ovarian cancer (OC) kills more women per year than the road toll. There is no screening test. In NZ the majority of women can’t name a single symptom before diagnosis. There are significant barriers to access detection tests. NZ survival is 5% less than Australia (Au)—NZ has far fewer funded drugs and clinical trials. Breast cancer survival is more than double OC. Au/Canada/US have dedicated OC research, we fund almost none. Supported by Cure Our Ovarian Cancer, OCANZ, Talk Peach and NZGCF.

Why does this petition deserve and need much more support?

The woman in the first tweet is one of three or four New Zealanders who will die of ovarian cancer this week; one of the +/- 182 the disease will kill this year.

That’s more than will die as a result of road accidents.

The government spends about $1 billion a year on road safety improvements and most years nothing at all on raising awareness of ovarian cancer, improving access to tests, treatments and clinical trials, or research.

Because of that the eight or 10 New Zealand women diagnosed with the disease this week and every week will find their survival rate is no better than it would have been decades ago.

One reason for that is that many are diagnosed late because they didn’t know the symptoms and often their doctors mistake it for other less serious conditions.

Another is that for years there has been little or no research to find better treatments and eventual cures.

That will change if the petition is acted on.

The petition is fronted by more daughter and supported by four gynaecological cancer organisations – Cure Our Ovarian Cancer, Ovarian Cancer NZ,  Talk Peach and the NZ Gynaecological Cancer Foundation – and it is non-partisan.

Ovarian cancer doesn’t care about politics and it doesn’t discriminate. It strikes women of any age or ethnicity and it kills them.

It will keep killing them unless there is increased awareness of the symptoms, better access to testing, treatments and trials and a lot more research.

Please sign the petition and share this link to encourage family, friends, work mates . . . everyone you know to sign too: https://www.parliament.nz/en/pb/petitions/document/PET_99389/petition-of-jane-ludemann-for-cure-our-ovarian-cancer

P.S.

This isn’t intended to dissuade anyone from supporting the other petition – it’s not either/or.


Sign to save lives

28/10/2020

One New Zealand woman dies of ovarian cancer every 48 hours.

You can help change that horrifying statistic by following this link and signing the petition to save lives.

It is the work of four gynaecological cancer organisations that are seeking better outcomes for women with the disease with a petition that seeks better education of women and health practitioners, improved access to tests and treatment, improved access to clinical trials and a lot more research.

The petition is non-partisan, the women promoting it have worked across parliament to get cross-party support.

The media release from Ovarian Cancer Awareness explains:

Organiser of a petition asking for a better deal for education about and support for ovarian cancer, Jane Ludemann, says that legislators and decision makers need to start taking this disease seriously; it kills a woman every two days in Aotearoa New Zealand.

“Ovarian Cancer is the most deadly gynaecological cancer, and kills more women than New Zealand’s annual road toll and more than melanoma. Yet it remains underfunded and largely ignored,” she says.

Jane is spearheading a petition to Parliament asking for the development of ovarian cancer education campaigns for the public and health professionals, better access to testing for women with symptoms, improved access to approved therapies and clinical trials, and dedicated funding of research.

“The most significant issues around ovarian cancer begin with the lack of knowledge about it – women don’t know the symptoms and leave it too long to report to their doctors, who themselves often don’t connect the symptoms with the cause.

“Next, there is no specific screening test for ovarian cancer (unlike a mammogram for breast cancer or a smear for cervical cancer) and providers use the excuse of funding to leave symptomatic women untested.

“Then we lack access to drugs that are proven effective overseas and to clinical trials – which would allow women to access promising new treatments.

Jane says that virtually every advance in cancer survival has been made on the back of clinical trials and the lack of funding in this country means the trials are not available here.

“It is extraordinary that the government spends more than $126 million on medical research through the Health Research Council (HRC) every year. In 2018, 2019 and (to date) in 2020 the HRC has not funded any ovarian cancer research at all.

“Significant improvements in survival just cannot be made without advances in treatment and screening through research.

“There are just too many families affected by the Ovarian Cancer-caused illness and deaths of mothers, partners, sisters, nieces and friends. In the lead up to the election we hope both sides of the house will pay attention to this very real health issue,” she said.

The petition is being supported by Cure Our Ovarian Cancer, Ovarian Cancer Awareness, Talk Peach, and the New Zealand Gynaecological Cancer Foundation. If can be accessed here:

www.parliament.nz/en/pb/petitions/document/PET_99389/petition-of-jane-ludemann-for-cure-our-ovarian-cancer

Ovarian Cancer – some facts

  • One New Zealand woman dies of ovarian cancer every 48 hours.
  • Ovarian cancer survival overall less than half that of breast cancer. For advanced (stage 3-4) ovarian cancer, the 5 year survival rates are 3-4+ times less.
  • 90% of NZ women can’t name a single symptom before they are diagnosed. The majority of women in NZ are diagnosed at an advanced stage.
  • In New Zealand overall survival is 37%, a figure which hasn’t changed in over 15 years, and is 5% less than Australia. If detected at stage 1 (when the cancer is contained within the ovary) survival is over 90 %
  • A cervical smear does not detect ovarian cancer. There is no screening test. However, a ca-125 blood test and transvaginal ultrasound can detect over 98% of ovarian cancers and their combined cost is similar to a mammogram. But over a quarter of NZ women with ovarian cancer have to visit their doctor 5 or more times about their symptoms before being offered a test
  • Australian government in 2019 announced targeted research funding – allocating an additional $35 million ($20 million for ovarian cancer and a further $15 million for gynaecological clinical trials). The New Zealand government has funded no research in this area for the past three years.
  • For more information see: https://ovariancancer.co.nz

Jane is my daughter. I wrote about her living under the cancer sword here.

Her personal website is janehascancer.com 

You’ll find more about the petition and ovarian cancer at Ovarian Cancer Aotearoa Coalition


Nat plan to fight gynaecological cancers

09/09/2020

National has announced a policy to address late diagnosis and poor survival rates for women with gynaecological cancers:

National is pledging $20 million to protect women from gynaecological cancer through greater awareness, improved clinical guidelines, increased testing and greater access to clinical trials, National Party Leader Judith Collins and National’s spokesperson for Rural Communities and Women Barbara Kuriger say.

Every year in New Zealand more than 1000 women are diagnosed with, and over 475 die, from gynaecological cancer.

This investment is alongside National’s commitment to fund an independent Cancer Agency and set up a $200 million fund dedicated to cancer drugs.

“As an ambassador for the New Zealand Gynaecological Cancer Foundation this has special significance to me. Too many women are going untested and undiagnosed at the moment,” Ms Collins says.

“The sad reality is that most New Zealand families will be affected by cancer. Cancer doesn’t discriminate when it chooses its victims and people shouldn’t have reduced access to treatment just because they live in the country.

“The signs and symptoms of gynaecological cancer are difficult to determine so we will be promoting even greater awareness so women can get themselves diagnosed as soon as possible. National will provide a funding boost to awareness campaigns to ensure this happens.

“We will work with health professionals to maintain up-to-date clinical guidelines that give them the resources to identify gynaecological cancer earlier and make the best decisions around diagnosis and referring women for testing.”

This is just the first announcement in our strong plan to provide better health outcomes for rural communities,” Ms Kuriger says.

“Farming is a stressful and sometimes isolating profession. It can be all too easy to neglect your personal health needs when you’re running a farm, so we want to make care easy and accessible.

“The increased awareness and improved clinical guidelines will lead to more women being tested, and we will provide increased funding to ensure every woman in New Zealand who needs a test is given one.

“National is focused on providing better outcomes closer to home for Kiwi families and communities. This funding will save lives and ensure New Zealand women are getting the care they deserve.”

The Q&A on gynaecological cancers says:

How many women are diagnosed with Gynaecological cancer at the moment?
• Currently, around 1,000 women a year are diagnosed with one of the five gynaecological cancers each year in New Zealand.
How many women die from Gynaecological cancer at the moment?
• Currently, around 475 women are lost to gynaecological cancer each year in New Zealand.
How many more tests are needed?
• Because too many women aren’t aware of the symptoms of gynaecological cancer, and so aren’t presenting for tests, we simply don’t know the size of the unmet need. That’s why our first priority is to increase awareness.
• The funding provided will ensure that the additional demand for tests can be met. If more women are getting tested, and diagnosed earlier, then we will consider this policy a success.
Is this enough?
• It’s not about the amount of money, it’s about spending it right. We know that the evidence says that awareness is an issue and so that’s the issue we want to address.
What kind of tests will be funded?
• There are five different kinds of gynaecological cancer and there are various different tests that can be used for diagnosis. For ovarian cancer this includes ultrasound and the CA-125 blood test.
• We don’t want to pre-empt the development of updated clinical guidelines by determining what kinds of tests are needed, or how many more women will be receiving them, but we do want to ensure that every woman has timely access to the tests they need.
How many more women will be tested as a result of this?
• It’s hard to say because the issue is that too many women are going untested and undiagnosed at the moment.
• The important thing is that women are aware of the symptoms of gynaecological cancer, that they are consulting their GPs in a timely manner, and that where appropriate GPs are referring women for testing.
• National will ensure that the money for increased testing is available, as this is ultimately about saving lives.

Full details are here.

My daughter has low grade serous ovarian cancer, a rare form of the disease which is frequently incurable.

She had been to doctors for two years with symptoms before she was diagnosed.

Her story is far too common because too many women don’t know the symptoms, it’s difficult to diagnose and like four of the five different gynaecological cancers and only cervical cancer it can’t be detected by a smear.

This policy will improve awareness, educate health professionals, increase testing and access to clinical trials.

Six New Zealand women are diagnosed with ovarian cancer each week and four New Zealand women die of the disease each week.

Unlike breast cancer which has much better survival rates, the prognosis for women with ovarian cancer hasn’t improved in decades.

One reason for that is that women with ovarian cancer are often diagnosed late and are too ill, or don’t survive, to advocate.

That isn’t an argument to reduce funding for breast cancer initiatives. It is a reason to put a much greater effort into raising awareness, testing and improving access to clinical trials, which this policy aims to do so that women with ovarian, and other gynaecological cancers have the much better chance of survival that women with breast cancer do.


Ovarian Cancer Awareness could save lives

02/02/2018

The media release from the Ovarian Cancer Support Group, a voluntary group of around 90 women who have or have had the disease and who are working to raise awareness, was emailed to me.

I am reproducing it in full in the hope that it might save lives.

Loud call to understand ignored killer this February:

 It’s Ovarian Cancer Awareness month in February, and there’s a group of women out to make as much noise about it as possible.

Incorrectly labelled as one of the silent killer cancers, ovarian cancer often isn’t identified until it has spread significantly, and as a result, there is just a 42% survival rate beyond five years.

That’s why the Ovarian Cancer Support Group, a collective of some 90 women who have or have had the disease, believe it’s about time the message is shared widely to New Zealand women. As well as telling their own stories, they’ve produced a poster that’s being sent to every GP surgery in New Zealand, outlining symptoms to improve awareness.

Spokesperson Lisa Finucane says that ovarian cancer isn’t so much silent – just often not heard in the hubbub of daily life. And not just because gynaecological issues aren’t usually discussed outside of the doctors’ surgery.

“There are clear symptoms of this cancer and it’s so important that women and their GPs consider ovarian cancer as a possibility when they experience them, “she believes.

“The four main symptoms are: persistent stomach/pelvic pain, persistent bloating, difficulty eating/feeling full more quickly, and needing to wee more frequently. Alongside these are back pain, changes in bowel habits (going more often or a lot less), abnormal vaginal bleeding, and extreme tiredness for no obvious reason.

“For most women these will have another, less serious cause. But, for some these are the early warning of ovarian cancer, and if they are overlooked, either by the GP or the person experiencing them, the outcome can be devastating.”

With her sister, Rachel Brown co-founded the New Zealand Gynaecological Cancer Foundation and then the Ovarian Cancer Support Group, following the death of their mother from ovarian cancer more than 10 years ago. She says that many cases are unnecessarily slow to be diagnosed. That’s why the most important thing, she says, is for women to understand their bodies’ warning signs, to monitor them, and to persist in advising their health providers about the symptoms.

“We want to encourage any woman to act if she has those symptoms, particularly if they are ongoing, severe, frequent, or out of the ordinary.

“We want women to know to see their GPs as soon as possible and to keep a record of the symptoms to help support a speedier diagnosis. There are online symptom diaries and phone apps available which can help provide more clarity around the severity and regularity of symptoms.

“This could be the difference between a cancer that is contained and can be treated, to one that has spread and frankly has a very serious consequence.”

Unlike many cancers which have made significant survival advances in recent decades, the mortality rate for ovarian cancer is still close to 60% of women dying within five years of diagnosis. In comparison, women with breast cancer fare considerably better, with mortality rates reducing from 47% to 13% in the same time frame.

Ovarian cancer lags behind breast cancer for several reasons including lack of funding for research, and late diagnosis contributed to by lack of symptom awareness.

“The statistics show that about one in 70 women in will get ovarian cancer,” says Rachel.  “Increasing awareness about the symptoms should mean that a higher percentage of these will be diagnosed earlier when treatment is more likely to be successful.  And that’s what we are aiming for.

“It’s time that we talked about symptoms of this and other gynae cancers, the same way we are comfortable talking about breast lumps and dodgy moles. Awareness leads to better vigilance – and will save lives.”

Ovarian cancer – the facts and fallacies

  • Anyone woman, any age, any ethnicity can get ovarian cancer – this includes children, women who have had hysterectomies, and pre-and post-menopause.
  • It is not detected by cervical screening, nor is the HPV (human papilloma virus) vaccine (available to girls in New Zealand) a prevention for ovarian cancer
  • Evidence suggests taking the contraceptive pill reduces risk while some lifestyle factors may increase the chances of developing it. These include smoking, obesity, giving birth to your first child after 30, not having any children, not breastfeeding, and using HRT. Other contributing factors include a family history of breast, ovarian or colorectal cancer, getting older, and having endometriosis.  (ovarian.org.uk)

See more at: www.ovariancancernz.org.nz

 

 

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