Insurance woes – is your health really covered?

In 2002 I took out an insurance policy with Southern Cross. It was a fairly high premium for Wellness B but I knew with my crazy family history that I needed to protect myself from a young age (I was 22). I signed the paperwork for ‘unlimited surgical cover’ and it certainly helped me sleep better at night, knowing I had this level of protection when it came to surgeries and future health hiccups.

I’m now 38 years old and I found out I had BRCA nearly 3 years ago. During that same year Southern Cross set a new clause to policies – a $40,000 limit for preventative surgeries. I was shocked they would do this for 2 reasons – firstly because the amount of $40,000 covers only 1 surgery and BRCA’s generally need 2 – 4 surgeries, and secondly because with BRCA we have an extremely high chance of developing cancer, sometimes nearly 80%, so the surgeries are in many cases necessary for the people living with the BRCA gene. But the view of Southern Cross seems to be – they would rather wait until the cancer has arrived (not to mention your life is in danger!) and pay out a much higher amount at that stage –  and chemotherapy, radiation is certainly not cheap.

Right now as I type I should be in hospital recovering form my oophorectomy (ovaries removal). No one can tell me definitively whether there is cancer in my ovaries right now, just that the chance is high and “we will know when we’ve removed them”. I have considerable pain in my ovaries, which is from enlarged cysts in my ovaries – PCOS Syndrome. This is not a great indicator to my ovary health. Compounding this is a history of ovarian cancer in my family.

So when Southern Cross cancelled my operation 6 days before it was scheduled, I was left feeling pretty low. They called me and said ‘we can see why this is a necessary operation for you, but your policy won’t cover it.” and that was that.

I have very real fears about what will happen if my ovaries are not removed soon and I am now on a waiting list in public.

A big thanks to journalist Melanie Earley and BRCA carrier Susan Mahon for putting this story together with me.

You can read it here…


Mum told six days before ovarian surgery that insurance won’t cover it

By Melanie Earley

Just six days before Auckland mum Anna Jobsz was due to have her ovaries removed she was told her insurer wouldn’t pay.

Now the mother-of-one and PR professional must fork out $15,000 for private fees or postpone the potentially life-saving surgery.

Jobsz, 38, has the BRCA2 gene which dramatically increased her chances of getting breast or ovarian cancer.

Anna Jobsz plans to have her ovaries removed after being diagnosed with the BRCA gene, which causes a higher risk of ovarian cancer.
CHRIS MCKEEN
Anna Jobsz plans to have her ovaries removed after being diagnosed with the BRCA gene, which causes a higher risk of ovarian cancer.

She already underwent a double mastectomy in 2016, and now wanted her ovaries removed as a preventative measure.

“They don’t know whether there’s cancer in my ovaries right now,” Jobsz said.

“Before my mastectomy they could tell me I was cancer-free but with ovarian cancer they can’t.”

However, her latest operation has been declined because the double mastectomy pushed her over the claim limit of $40,000 for preventative operations.

Jobsz has been insured with Southern Cross Insurance since 2001, with a $120 monthly premium. The plan originally provided unlimited surgical treatment for cancer.

In 2016 Southern Cross created the cap of between $30,000 and $50,000 per lifetime, depending on the member’s plan, for preventative operations.

The surgery to remove her ovaries was deemed “preventative” because it was not known if she had cancer of her ovaries.

“Anyone with BRCA requires more than one operation, so that amount covers hardly anything,” Jobsz said.

“I signed my policy in early 2000’s for unlimited surgical cover and I’ve been paying the full amount on my policy for many years. Their new rules don’t seem fair.”

Without insurance, Jobsz could not afford the $15,000 surgery and would have to go public. This could take up to a year.

“There’s no backstop for me, it’s a horrible position to be in, they’re asking me to prove I have cancer in my ovaries.”

Jobsz has already had a double mastectomy.
ANNA JOBSZ/INSTAGRAM
Jobsz has already had a double mastectomy.

​Jobsz said she spent a lot of time worrying about her son, who recently turned five, and what his future would look like.

“I worry about it all the time, I need to be here to take care of him.

“It’s something I think about every night before I go to sleep.”

Her doctor submitted her insurance claim form about three weeks ago, but the cover was declined less than a week before the surgery, she said.

Jobsz with her five-year-old son, Carlo.
ANNA JOBSZ
Jobsz with her five-year-old son, Carlo.

Southern Cross Health Society chief marketing officer Chris Watney said he was aware Jobsz’s claim had been declined.

“The Society recognised the wish for members to have access to surgeries to prevent the development of cancer in people at high risk of developing the disease,” he said.

“The allowance is not intended to cover the full cost of multiple preventative surgeries, but rather provide a contribution.”

Once the lifetime allowance was reached, any further procedures would not be funded, Watney said.

“This would place too much of a burden of cost on the collective membership of our society – raising premiums significantly.”

For Jobsz, the BRCA2 gene came from her father’s side where there was a strong presence of cancer in the breast, ovary and stomach.

Both her grandmothers were diagnosed with cancer, and her father also died from cancer when he was 39.

It wasn’t until her uncle was diagnosed with male breast cancer her suspicions were confirmed about having the gene.

Having her ovaries removed would cause infertility, but Jobsz said she needed to focus on the positive side of things.

She started a blog following her diagnosis to discuss her feelings and bring awareness to the issue.

“It is really scary to deal with knowing my risk of ovarian cancer is so high, and I’m not the only one dealing with this.”

Jobsz has found it hard to juggle motherhood with recovering from surgery.
ANNA JOBSZ
Jobsz has found it hard to juggle motherhood with recovering from surgery.

AUT lecturer Susan Mahon understood the struggle Jobsz faced. She found she carried the BRCA gene two years ago.

“I had my ovaries out a week after being tested, before I even had a mastectomy, and they found a large high-grade serous carcinoma in my right ovary.”

Mahon said she had been “lucky” her ovaries were removed so early, before she reached the $40,000 cap.

“If I had gone public and waited six months to go through the system I would be dead.”

Jobsz said she was considering taking her case to the Insurance and Financial Services Ombudsman.

 

READ MORE:
Remembering Helena McAlpine
Anna Jobsz undergoes mastectomy
Recovery from a mastectomy

Thinking about BRCA during this important month…

It’s always good to remind ourselves of the real life risks of breast cancer during Breast Cancer Awareness Month. For me, getting out on the streets in October is so uplifting when I see the collectors dressed in their vibrant pink outfits, banded together and eagerly chatting to passersby.  Not only are they fundraising for one of the biggest ‘killer diseases’ in New Zealand, but they are also spreading awareness and reminding us to – check our boobies!

So lets for a moment shine a light on the 10% of breast cancers which are ‘inherited genetic breast cancers’. Why? Because those breast cancer gene carriers are able to drastically reduce their risk through preventative surgeries. In other words – stop breast cancer and ovarian cancer before they arrive!

I reached out to Mollie Erskine, Health Educator at NZBCF, and asked her to update me on her latest publishings relating to genes and inherited breast cancer information.

“The field of genetics is expanding and holds a very promising future. If you are tested positive for a gene associated with an increased risk of breast cancer you now have the power to make an informed decision.”

Read more about it here:  What I need to know about genetic risk of breast cancer?

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Closing note from Erskine’s story:   To find out more you can watch our latest webinar: Genetic Risk of Breast Cancer, or ring our 0800 BCNURSE line. If you already have a confirmed mutation, you may also want to take a look at the New Zealand Familial Breast Cancer Study.


 

Every now and then I come across a story about BRCA that I really want to share on my blog, and this is one of them. 

Last week at The Basser Centre, New York City, there was a BRCA storytelling night where 4 speakers joined to offer their own candid experiences with the BRCA Mutation. Read about it below…


Evening of Storytelling Speaks to Future of Cancer Research

BY BRITTANY LOVELY - PUBLISHED OCTOBER 09, 2018

“There are a few aspects of this story that are a bit unsettling. I’m sorry about that, but I’m not going to pull any punches, it’s a real story and if it’s going to be told, it has to be told the way it happened.”

This is how Rob Sorin opened his story at the “An Evening of Storytelling” event, presented by the Young Leadership Council (YLC) of the Basser Center for BRCA, part of Penn Medicine’s Abramson Cancer Center.

The room of sponsors, family, friends and colleagues were treated to a night of personal stories from three individuals touched by BRCA mutations. Each speaker touched on their personal journeys as a mother, a caretaker, and a single woman embarking into the dating world post-preventative surgery.

Each story was laced with humor and heartache, but they all spoke to the promising future that research will provide for future patients and the newly BRCA-positive population.

The Caregiver’s Perspective – 1 man’s BRCA story

Sorin told his own story from a caregiver’s perspective. His wife’s journey began in the early days of the BRCA discovery. A lawyer by training, Sorin found that his workplace skillset came in handy taking on the role of researcher.

“I was going to handle the mental task of being the advocate, doing all the research,” he said. “(My wife) was going to fight the physical battle. I was going to push her doctors to think about her case individually.”

Plowing through pages and pages of the latest research, at the time, gene testing was not on doctors’ radar. Though expensive and not covered by their insurance, it was a no brainer for Sorin and his wife to pursue since it could inform a new course of treatment. After chemo, Sorin’s wife, Helene, was scheduled for surgery.

Then, on a normal Tuesday morning, Helene went to work on Wall Street and the Towers fell mere hours later. Sorin remembers thinking, “I spent the last eight months doing everything I could to save her and for the next eight hours I thought I had lost her.”

Helene made it out of lower Manhattan, having ensured that everyone from her floor got out first. Her surgery was one week later.

He mentioned that while the role gave him a sense of control, of being part of the solution, as a caretaker he needed support as well. “I felt it was my responsibility to be positive and always offer a pep talk when Helene was scared. But I think as a spouse my fear was no less intense than Helene’s,” Sorin said. “I decided to see a therapist who was an expert in this area. However you can, I think it is very important for a caregiver to have a caregiver.”

Helene went on to carry the torch in the Salt Lake City Olympics and live for 12 years cancer-free. A self-identified lump led to another malignancy, a case so rare, doctors made a case study of Helene’s second fight with the disease.

After beating the disease for a second time, Sorin and his wife discovered the Basser Center. Their daughter, Jenny, decided to have her genetic counseling at the center and discovered that she is positive for the BRCA mutation.

“Unfortunately, cancer is complicated and there is an art to fighting it. The good news is that the science is growing and the art is shrinking,” Sorin said.

As Jenny begins her journey living with the BRCA mutation, Sorin says that his role as a caregiver has shifted. “Jenny needs to be empowered as a young adult to make her own decisions about her body. I’ll always be there and offer advice if she should ask, but ultimately, she will decide what is best for her. Most importantly, Jenny has knowledge and knowledge is power. Jenny has choices, and hopefully with more advances from Basser she will have more choices.”

READ THE OTHER BRCA STORIES HERE

 

anna pink
My NZBC Month Pink Post!

ANNA JOBSZ INSTA HERE

 

The super-human parent juggle!

Sometimes I worry that what we see on social media isnt ‘real life’. We project the best versions of ourselves and try to look like super-humans, and often-times life can be so very different. That’s one of the reasons I wanted to do this story with the NZ Herald.

Being a single mum with a busy career is a full and rewarding life. I have many amazing supermum moments where I high five myself. Many days I juggle PR campaigns, run my beauty business, mentor juniors, make lego rocketships with my son, fit in a yoga class, cook an awesome dinner and fall asleep after meditating. But some days my car breaks down, my son is sick, technology is fickle and my work is so piled up so high that I don’t know where to start.

So when you start loading things on top of this, like major surgeries, recovery time, and trying to take care of children on your own – things can be pretty tough.  Through this blog I have met some amazing women. Many of them facing mastectomies and major surgery and most as single parents. I hope to see more general support available for these parents, and in paticular more short term benefit options so they can get through these tough times and avoid ending up on long term benefits.


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Single parents struggle in the face of illness

Prominent public relations specialist Anna Jobsz is calling for agencies to offer more support to single parents who undergo major surgeries or illnesses.

Jobsz has opened up about her struggle caring for her son alone, while also recovering from two major surgeries.

After discovering she had a mutated BRCA gene, in April 2016 Jobsz opted to have a mastectomy to reduce her considerable cancer risk.

Months later she had reconstructive surgery. All the while, she cared for her 3-year-old son full time.

Her family is overseas and Jobsz could depend on friends occasionally, but Jobsz was disappointed to be told by Work and Income New Zealand her only options were to receive a long term benefit, or nothing.

“I think most single parents want to keep working despite illness, and they don’t want to get into further debt because they take three weeks off work to recover,” Jobsz said.

“When I came home from hospital I would have friends come over the first few days if they could spare an hour or three away from work, which was a big help, but the hardest part was at night.

“My son would often wake up two or three times in the night because he was unsettled after I’d been away in hospital and at that point I could barely walk and I was still on heavy meds. Getting up at night and lifting him out of his cot was difficult mentally and physically.”

anna & Carlo first day homeShe recalled five days after leaving hospital having to take her son to his own surgery to receive grommets. They were at the hospital all day. The appointment had been a long time coming and she didn’t feel she could cancel.

“I had to drive him, and get him into the hospital in his pram, upstairs in the carpark, and help him through the day while I was on heavy meds and just wanted to sleep. I had waited months for him to get on the operating schedule for grommets, and his hearing was so bad, I had to go. Those moments are truly tough.”

Following her surgeries Jobsz was readmitted to hospital after contracting infections, and at that point the hospital appointed a social worker because they could see she was struggling. The worker said a WINZ staffer would visit her to explore options, but no one showed up, Jobsz said.

After following up she said she was told to call her family, or go on a long term benefit. Dismayed to discover there is no short term option available, she’s calling on the agency to introduce one for solo parents who find themselves in her position- juggling work and a child, and extra costs including medication, childcare, and travel.

Only after her surgeries did ACC contact Jobsz to tell her what payment options she might be eligible for, and Jobsz fears that single parents who don’t think to ask, won’t receive.

She wants WINZ, ACC, and hospital staff to work together to ensure patients like her get the right support.

“I hope that together we can find a solution because with an alarming rate of breast cancer in New Zealand, especially amongst Maori women, I can imagine that many future single mothers will have to deal with this issue. How can we find a way to take care of our parents in a short term way without them ending up on long term benefits?”

A social media post where she spoke about her struggles received strong support from others, including Minister Nikki Kaye, who recently battled breast cancer.

Breast cancer survivor and breast cancer charity Paddle for Hope founder Karin Horen said the gap in support was a major issue.

Horen was first diagnosed with cancer at 26, which returned in her 40s. She has three children whom she cared for after her surgeries.

“There’s people who have no access to anything. You sit in this hospital for days and they don’t give you any idea what you’re entitled to. The problem with cancer is that it doesn’t finish with chemotherapy, or radiation, or an operation. It’s the ongoing effects that you’re dealing with.”

Breast Cancer New Zealand spokeswoman Adele Gautier said breast cancer survivors were often surprised at the financial impact on themselves and their families.

“We have a free healthcare system and getting surgery and drugs is not a problem, but the additional costs can cause a really hard time. It’s a tough situation made even tougher.”

A WINZ spokesperson said it had a range of benefits available for single parents and that what they were eligible for was dependant on individual circumstances. In emergencies assistance could also be provided for accommodation, childcare, and medical costs.

Mediterranean diet could reduce your risk of Breast Cancer by 40%

We all know that eating a healthy diet can greatly improve our health. And in many cases we hear of ‘wonder-foods’ and superfoods that can boost our health and wellbeing in specific ways. But more recently researchers have started to look at diets from around the world, and the health impact on the people who eat these diets.

This huge study in the Netherlands followed 62,000 women aged 55 to 69 over a period of 20 years. The researchers found a strong link between the Mediterranean diet and reduced oestrogen receptor (ER) negative breast cancer.

Around 20 to 25% of all breast cancers diagnosed in New Zealand are ER negative, that’s 1200 – 1500 women diagnosed every year. According to this study, if we all followed the Mediterranean diet, 40% of those cases could be avoided.

The Mediterranean diet is rich in olive oil, fruit, nuts, fish, vegetables and whole grains, and is already known to reduce the risk of heart disease and stroke.

READ THE FULL STORY HERE!

More information about eating a Meditteranean Diet HERE!

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Silicone Success!

My reconstruction was completed in August 2016 by Dr Michelle Locke. I am so happy with the results, my breasts are now the size they’ve always been and they are a great shape, complete with my very own nipples. Of course I have small scars on each side of my nipples and overall they arent exactly like the real ones, but I think they are wonderful.

Growing up I watched my mums breast operations, and after so many she was left without any breasts or implants – just one big long scar. So I feel very lucky to have had this breast reconstruction through St Marks Breast Clinic.

Now that 2017 has arrived I feel like I’ve really achieved something getting through the surgeries. I’m naming 2016 as my ‘discovery year’. I discovered so much about myself through so many challenges. I’m pretty sure that makes this year my year for living!

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You can read about my reconstruction here in magazine ‘The Beauty Book’:

 

Anna Jobsz is a do-it-all kind of girl with a boutique PR & Events business, series of ladies networking lunches, mineral cosmetics business and a 3 year old son.

In January this year Anna learned that she had the mutant cancer BRCA gene that significantly increased her odds of having Breast Cancer and other cancers. This busy single mum wasted no time in acting, and in April this year, at age 36, Anna underwent a double mastectomy with nipple sparing. This lifesaving procedure reduced her lifetime chance of Breast cancer from over 80% to just 1%.

Was it difficult deciding to have a Double Mastectomy?

No it was a very straight forward decision. I knew immediately that I was not comfortable with my extremely high cancer odds. With the BRCA gene from my dad’s side I had around a 60% chance of Breast Cancer but with my mum’s history of invasive Breast Cancer in both breasts – it raised my odds even higher. I wasn’t prepared to play the waiting game and inevitably end up with a life threatening cancer. I watched my dad die at 39 from a BRCA cancer and one of my best friends died last year from Breast Cancer at age 38, so I wanted to be proactive.

What was the hardest part of having a your big operation?

The single hardest thing for me was being away from my son every time I went to hospital. Not just because I missed him, but because he was too young to properly understand that I hadn’t just abandoned him. I think by the third hospital stay he was starting to understand that mummy was going somewhere to get better. Physically it was hard going, I was in a good deal of pain the first two weeks and unable to do even simple things. I had moderate to mild pain for 5 weeks after that. At no point did I regret my decision. I knew having a mastectomy would come with significant challenges and I was prepared to deal with whatever came my way. I also suffered a bad infection after my operation that put me back into hospital, it was a truly challenging time but the team at Auckland Hospital were amazing.

Tell us about your reconstruction and your cosmetic result?

After the removal of my breasts they pumped my expanders up each week with saline until I reached my pre-operation C cup size. Then you wait about 6 weeks for the skin to settle before having the reconstructive surgery to put in the silicone implants. I had an amazing team with Dr Vanessa Blair from St Marks Breast Clinic removing my breasts and Dr Michelle Lock doing all of the cosmetic surgery work. When I started this process at the beginning of the year I had no idea what my breasts would end up looking like, so to have such an amazing result has really been the silver lining on this bittersweet journey. I still have my original nipples and my size and shape is really quite incredible. I was told that BRCA operations are very tricky because they remove over 95% of the breast tissue which makes it hard to get an even result. So I’m very lucky to have such a great outcome.

What is your biggest learning from having BRCA and these procedures?

Firstly – I have had to accept that I am not always going to be in control. In the beginning I really struggled to accept the help, but once I gave in to my close friends life became much easier. They quite literally had a roster of pick ups, drop offs, sleepovers, washing, food, nursing and emotional support. I was blown away!  I’ve also learned that it’s not about ‘the right decision’ it’s about ‘your right decision’. I can’t keep trying to do what is right in life, I can only do what is right for me. That’s a biggie.

How have your surgeries affected your view on beauty?

Being beautiful isn’t just skin deep, it’s soul deep. If you feel beautiful in yourself people will feel it simply by being around you. When I first had my breasts removed it was an interesting process to go through. I had been worried pre-op that being ’breastless’ for several weeks would make me want to hide away. But it wasn’t the case at all, I felt brave! I rocked my A cup bras, it was surprisingly liberating. Now that I have my reconstruction complete I feel every bit the beautiful woman I was with my original breasts. Ultimately I think if you can’t be happy without your breasts then you have no chance of being happy with them!

Embracing your inner sparkle!

When you know someone who has the biggest, brightest personality – for some reason you expect them to be the last one to leave your world. That’s how I felt about Helena McAlpine. So when she passed away a year ago it left a big hole in my life and my heart.

Last week http://www.stuff.co.nz asked me to write this piece on Helena to commemorate her one year anniversary. Helena lost her battle to breast cancer in September 2015 after a very long and brave fight. She will be remembered by so many people in New Zealand and the world…

http://www.stuff.co.nz/life-style/life/84793532/remembering-helena-mcalpine-best-friend-anna-jobsz-touching-thoughts-a-year-on-from-her-death

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Kia Kaha Helena in the sky Xxx

Canadian Woman raises awareness for BRCA

Canadian woman, Laura Kelly carries the BRCA gene. After losing both her parents to cancer her odds of getting both breast cancer and ovarian cancer were extremely high. A few months ago she had a double mastectomy at Women’s College Hospital in Toronto.

I feel so many parallels with Laura, as though we are living almost the same life in another place.

Check our Laura’s story and her brave message here: http://www.orilliapacket.com/2016/08/25/washagos-laura-kelly-who-carries-rare-genetic-mutation-wants-testing-to-be-more-accessible

Laura’s blog here:  http://www.laurakellybrca.ca/

Laura Kelly

Information from the story:

According to the Canadian Cancer Society, most breast and ovarian cancers are not hereditary. Some women have a family history of breast cancer, but only a small number are due to an inherited gene that increases their risk of cancer.

“BRCA mutations account for about 5% of all breast cancers and 4% to 11% of all ovarian cancers,” the agency says on its website. “Genes are not the only factor that affects cancer risk, so not every woman who inherits a BRCA gene mutation will develop breast or ovarian cancer.”