Kiwi charity secures New York Times Square billboard for World Ovarian Cancer Day

May 8, 2020

A media release from Cure Our Ovarian Cancer:

Friday May 8th is World Ovarian Cancer Day, and a young New Zealand woman, Jane Ludemann, has instigated a huge billboard campaign in New York’s Times Square to raise awareness and funding support for the often overlooked deadly disease.

“This campaign is about ensuring women living with ovarian cancer the world over experience hope for a better future. At times it can feel like we’re alone, almost as if we’re in an empty Times Square. That is why we need more eyes on this disease and more investment in research and hopefully we’re making that point with our new campaign,” says Ludemann.

In 2018 a young Canadian model, Elly Mayday, stood in Times Square in her teal underwear to raise awareness and funding for ovarian cancer research. She died of the disease ten months later but her efforts inspired Brianna Wagner to stand in her place in 2019. In 2020, the research charity, Cure Our Ovarian Cancer, planned to mark the day again with an organised fundraising event that involved sixty ovarian cancer sufferers from around the globe gathering in Times Square. 

Unfortunately Covid-19 restrictions made this impossible but Jane, also an ovarian cancer sufferer and founder of Cure Our Ovarian Cancer, was determined to continue the campaign and went on to secure one of the largest billboard’s in Times Square. Ludemann enlisted creative and digital agency Topham Guerin to develop the campaign to highlight the need for crucial research into curing the dangerous cancer, and honour the contribution of Elly Mayday.

Cure Our Ovarian Cancer is a New Zealand based charity dedicated to improving the survival of women with low-grade serous carcinoma. Founded in 2018, they raise funds directly, and through partner organisations in the United States, Canada, the United Kingdom, Australia and New Zealand. They want to see the survival rates of Low-Grade Serous Carcinoma (LGSC) reach those of breast cancer.

About Ovarian Cancer

Ovarian Cancer is the most lethal of all women’s’ cancers, the death rate being double that of breast cancer and it is the seventh most common cancer worldwide. Every year more than 300,000 women are diagnosed with the disease – about the daily number of people that pass through Time Square each day (330,000) – and 180,000 women will die from it. By 2024 the incidence of ovarian cancer will increase by 47% and the number of deaths each year will rise to 293,000 it is predicted. 

Background – Low-Grade Serous Carcinoma (LGSC)

Jane Ludemann was diagnosed with LGSC in 2017. LGSC is an often incurable subtype of ovarian cancer that disproportionately affects young women. Half are diagnosed in their 20s, 30s and 40s and the initial treatment usually consists of menopause inducing surgery, chemotherapy and/or hormone inhibitors.

In 1997 research showed the addition of hormone inhibitors like Letrozole could double the time it takes for a woman’s cancer to return. Letrozole received FDA approval for breast cancer in 1998.

“A 20 year delay in cancer treatments is unacceptable” says Ludemann. 

She was shocked to discover fewer research papers per year were being published on her ovarian cancer per year than on breast cancer papers per day.

“It was hard to believe just how little research was happening anywhere in the world for the cancer trying to kill me.”  

In 2018 she founded research charity Cure Our Ovarian Cancer to raise crucial funds to help researchers find treatments to improve survival.

“It’s a horrible, horrible silent killer and being diagnosed feels really isolating. But, despite what they are going through, we are an amazing community and this is what drives Cure Our Ovarian Cancer.”

“It’s really hard at any age to get this diagnosis, harder still to be diagnosed when you’re in your 20s, 30s and 40s. Elly was really brave and was one of the first women to be really public about her journey, and other women diagnosed looked up to her,” Ludemann says. “This is why we wanted to honour her memory and generate a conversation around ovarian cancer research. It also helps other sufferers to know they are not alone when going through this.”

The theme of this year’s World Ovarian Cancer Day is powerful voices and while there won’t be many people in Times Square because of the lockdown the billboard will provide a powerful voice to raise awareness of the disease and the need for research funding.

The billboard will go live at 4pm New Zealand time (midnight in New York).

You will be able to see it here


5 things every woman & those who love them should know

May 8, 2020

Every woman and those who love them should know about ovarian cancer.

If it is diagnosed early – at stage 1 when the disease is confined to the ovary – survival rates are high.

But ovarian cancer is often diagnosed late when it has spread into the abdomen, and further, and survival rates then are much, much lower.

Lack of knowledge about the disease is one reason it is so often diagnosed late. Another is that the symptoms can be vague and can often be for other, far less serious, conditions.

My daughter had been to her GP for two years with symptoms.

She has a rare subtype of ovarian  – low grade serous carcinoma – which disproportionately strikes younger women.

Sally Rae wrote Jane’s story in  survivor changing focus for the ODT.

Clare de Lore wrote about Jane in  how an ovarian cancer patient is fighting the myth of the ‘silent killer’ for The Listener.

Katie Kenny interviewed her for we’re comfortable talking about breast cancer, but ovarian cancer remains a forgotten disease on Stuff.

Dunedin Central Rotary Club reviewed her speech here.

Jane has a blog janehascancer.com

If you missed my blog post with Jane’s story, you’ll find it at  living under cancer sword.

You can learn more, and donate to lifesaving research at Cure Our Ovarian Cancer


Cancer isn’t cancelled

May 8, 2020

Covid-19 has cancelled many things but cancer isn’t cancelled.

It’s World Ovarian Cancer Day.

  1. A Pap test (cervical smear test) does not detect ovarian cancer
  2. Ovarian cancer is often diagnosed at a late stage
  3. Diagnosing Ovarian cancer before it spreads makes it much more treatable
  4. Symptom awareness might lead to quicker diagnosis
  5. Common symptoms include:
    a. Persistent bloating
    b. Difficulty eating
    c. Feeling full quickly
    d. Pelvic/abdominal pain
    e. Urinary symptoms

 

Around one in 70 New Zealand will be diagnosed with the disease this year.

Around one in 1,000 will, like my daughter Jane, have the rare subtype low grade serous ovarian cancer that disproportionately strikes younger women.

 

You can learn more at: cureourovariancancer.org

Follow Cure Our Ovarian Cancer on Facebook and  Twitte and Instagram.

Jane’s personal blog is janehascancer.com

 


Why are we waiting?

May 8, 2020

The Ministry of Health’s Covid-19 website gives details of case numbers as at 9am each day.

But it’s not updated until at least 1pm.

Why are we waiting until then?

Is there a good reason, or is it only so we can have what is becoming an increasingly tiresome double act for the media from the Beehive?

In the first few days it was a good idea for the Director General of Health Ashley Bloomfield and Prime Minister Jacinda Ardern to give daily briefings, to inform, reassure the public and to answer questions from journalists.

The DG fronting each day is probably still a good idea but the daily pairing with the PM is not.

Seeing only her, highlights the absence of other Ministers. It raises questions about why they aren’t fronting and none more so than Minister, Tourism Minister Kelvin Davis is nowhere to be seen when that sector has been hardest hit by the lockdown.

The tourism sector is imploding, countless jobs are being lost, and many are left with a feeling of uncertainty. . .

What tourism businesses desperately need is a leader to articulate a message of hope. It needs Davis to proactively front the media, on a regular basis, to give an idea of what the Government is doing to save the sector. Because fronting the media gets the message out to operators, who are in the middle of making big decisions about their futures. . .

Davis, like most other Ministers is kept well away from the media.  Giving us only the daily duet is in danger of politicising the Director General because as each day goes by it looks more and more like the purpose is not so much to inform the public as to promote the PM.

Take yesterday’s announcement of what the step down to Level 2 will entail.

It could have been issued as a media release followed by the opportunity for questions from media.

Instead the PM read it out in minute detail as if to a group of young children, and ones with comprehension problems at that.

Or at least that’s what the first bit sounded like. I gave up listening after a very few minutes because I had better things to do with my time and a PM overseeing what could well turn into the worst economic depression in our history  ought to have too.

Ardern is Labour’s, and the government’s, most popular figure but these daily deliveries are in danger of turning into far too much of a good thing.

Much more of this and she’ll find more and more of her audience will be following Pooh’s example of getting into a comfortable position for not listening.


Where’s kindness and empathy when it’s needed?

May 6, 2020

Heather du Plessis-Allan writes of a woman stuck in quarantine as her mother dies :

. . . She thought they were about to say yes today because she heard the PM yesterday say 18 people had been given permission. She thought that meant she was probably going to get a yes too.

Our producer had to tell her the PM was wrong, no one’s been given permission. She started crying on the phone.

Let’s be honest: she might not ever see her mum alive again.

The Ministry of Health is reviewing all 24 requests that they’ve declined, but that review will take most of the week. By then, this woman’s quarantine will probably be finished as she’s allowed out this weekend. But her mum might not make it to the weekend.

And the review doesn’t bode well for anyone else in quarantine hoping to say goodbye to loved ones.  The review’s being by the ministry’s legal team. Does that feel like the very people you’d send in to try to find a way to avoid having to change the decisions?

I don’t know how we’ve ended up with a health ministry so heartless and a Director-General of Health who isn’t sorry that this is happening.

He says his team are empathetic, but they’re not.  They’ve declined all the requests for exemptions. 

I read the judgement last night in the case of Oliver Christiansen and it’s obvious the Ministry of Health doesn’t want to say yes. Either that or we’ve found a collection of the stupidest public servants in the country.

Every time Oliver asked for an exemption on the grounds of ‘exceptional circumstances’, they told him that he didn’t qualify for a medical transfer.

Of course he didn’t qualify for a medical transfer. He wasn’t sick. He wasn’t even asking for that, but they made it sound like that was the only grounds for an exemption, and it wasn’t.

So they’re either stupid or deliberately frustrating people who want to say goodbye to their parents. . .

How heartbreaking it must be to be so near yet so far away from a dying family member; to be stuck in limbo between home and the loved one’s death bed; to be prevented from spending those precious last days or even hours together.

The government has gone from being too slow to close the border and quarantine new arrivals to overseeing a Ministry which is being pig-headed in its refusal to let a few people through on compassionate grounds.

Covid-19 came from overseas and we can’t afford to have the good done by the lockdown undone by slackness at the border again.

But it must be possible to follow protocols to reduce the risk, such as those the court ordered Oliver Christiansen to follow in overturning the MOH’s refusal to allow him to visit his dying father:

. . .The judge said, in her assessment, overall justice “demands an effective and swift response”.

“I have in mind here particularly the imminence of Mr Christiansen’s father’s passing and the very material factor that visitation is only at a private home and not in a public space.”

She ordered the ministry to permit Christiansen to leave managed isolation to visit his father.

But he could only do so if he traveled unaccompanied by car to his dad’s home and remained there until his father died.

Christiansen was also told to maintain physical separation from other family members at the home and to return on his own within 24-hours of his father’s passing in the same car to the isolation facility for the remainder of the 14-day period. . .

If necessary family members could be required to self-isolate for 14 days from the time they had any contact with the traveller as a precaution to further reduce the risk of spreading Covid-19.

The border with Australia will be closed for weeks to months and visitors from other countries will be required to stay in quarantine for a fortnight for much longer. There will be many more people coming to New Zealand to be with dying family members in that time. Protocols must be worked out to allow them to do so safely.

And it’s not just the people in quarantine. Back to Heather:

This has been happening for seven weeks. For the entire duration of Level 4 Lockdown, people were forced to die alone in their hospital beds without any family or friends with them.

The Ministry of Health has lost perspective. In the battle against a disease, it has condemned families to a sorrow that will sit with them for the rest of their lives.

I am not proud of them. I want them to show compassion. I want them to take a dose of their own medicine.

Remember what their boss Ashley Bloomfield and the PM keep telling us? Be kind. They should try a bit of kindness themselves.

Keeping people apart at the end of life is inhumane.

The way the dying and their families have been, and are continuing to be, treated shows a complete lack of  the kindness and empathy we are all being enjoined to demonstrate.

Both must be applied in designing a way to allow families to be together when one of them is dying without risking the spread of Covid-19.


No Corona

May 5, 2020

Straining social licence

May 5, 2020

Yesterday we got the welcome news that no new cases of Covid-19 had been detected.

That follows several days of new cases in single digits.

To most of us that looks like it would be safe to drop to Level 2 or may even Level 1:

At Level 2:

The disease is contained, but the risk of community transmission remains.

Risk assessment

    • Household transmission could be occurring.
    • Single or isolated cluster outbreaks. . . 

At Level 1:

The disease is contained in New Zealand.

Risk assessment

    • COVID-19 is uncontrolled overseas.
    • Isolated household transmission could be occurring in New Zealand. . .

So why aren’t we moving down at least one level, or at least knowing when we will?

The government has explained that elimination doesn’t mean no cases. That means that at whatever level we’re at there will almost certainly be some new ones.

But the health risk now appears to be less serious than the risk to the economy:

National Party leader Simon Bridges admits moving to pandemic alert level 2 could result in more COVID-19 cases, but says this could happen under any level and the lockdown has to end for the sake of the economy. . .

While the unprecedented restrictions have been successful in dramatically reducing the number of new infections of the virus – which has killed hundreds of thousands of people overseas – they’ve also taken a toll on the economy.

Bridges says there are 1000 jobs being lost every day under level 3, based on new applications for the Jobseeker benefit. This is similar to the rate of new applications under level 4, when far fewer businesses were able to operate – there were 30,000 applications in the month to April 17, despite the Government’s wage subsidy being paid out to organisations employing 1.6 million people.

“This has gone on too long,” he told Newshub. “We need to get New Zealand working again. Quite simply we’ve got to end lockdown because it’s so much easier to keep someone in a job.”

He said officials “from Ashley Bloomfield down” have said COVID-19 is “eliminated”.

“Having flattened the curve, let’s not flatten the economy as well. We have to come out at some point. We can’t just wait until there’s a vaccine.”   . . 

A thousand jobs lost a day is 1,000 people a day at risk financially and at risk of poorer physical and mental health as a consequence of that.

It’s not just jobs but whole businesses that have been lost and the longer we’re stuck at Level 3 the greater the risk and the greater the economic and social costs which also have health costs.

Compounding the frustration is the continuing dearth of information on what will happen and when it will happen.

We were initially told we’d be at Level 4 for four weeks. That turned into nearly five.

We were then told we’d be at Level 3 for at least two weeks. Given we’re not going to know until next Monday if there’s going to be a drop in levels, it’s likely that we’ll be stuck at Level 3 for at least a few more days longer.

Uncertainty about the legality of police action isn’t helping:

New Zealand Police’s decision to arrest Kiwis during alert level 4 despite being advised they had little legal basis to do so “undermines the rule of law” in New Zealand, the former Attorney-General believes.

The comment from Chris Finlayson comes just hours after leaked emails to NZ Herald revealed that police were told by Crown Law that they had little to no power to enforce lockdown rules.

Finlayson, a former National MP who served as Attorney-General for nine years between 2008 and 2017, says it’s clear the police have acted beyond their powers during the coronavirus crisis.  . . 

The refusal to release Crown Law advice makes it even worse.

Incumbent Attorney-General David Parker has thus far refused to make public the advice, despite mounting pressure from the Epidemic Response Committee and MPs to do so.

Finlayson believes Parker’s refusal means there are parts of the advice “he may not like” – but says that shouldn’t change whether it’s released or not.

“There’s an overwhelming public interest, for people whose freedoms have been curtailed over the last few months, to know exactly the legal basis upon which certain decisions were made,” he said. . . 

Last week the government accidently passed legislation that differed from the Bill MPs had seen. That undermines confidence, but Jenée Tibshraeny writes:

. . .The public is putting an immense amount of trust in the Government as it circumvents the usual checks and balances to get us through this crisis. But trust is earned. It’s also key to maintaining social cohesion.

Oddly, I can dismiss Thursday’s passing of the wrong legislation as an extraordinary genuine mistake.

But the lack of transparency around decision-making and incoherent way of announcing a billion-dollar policy change, are inexcusable.

The government has imposed unprecedented restrictions on us at an enormous economic and social cost.

The willingness of most of us to abide by the lockdown requires a social licence which must be based on trust.

The government’s refusal to give us all the information we need, and to which we are entitled, is undermining trust and straining that social licence, and that is putting strict compliance at risk.


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