Women with breast cancer crippled by medical bills not covered by Medicare or health funds

AUSTRALIAN women are going to extreme lengths to cope with hidden, crippling breast cancer expenses that they cannot afford.

SusSan Mayal is a survivor of breast cancer but spent thousands on out of pocket expenses. Picture: Jonathan Ng

EXCLUSIVE

Breast cancer has become a financial death sentence for women.

A shocking new survey, provided exclusively to News Corp, shows women who use the private health system are facing out of pocket medical bills of up to $21,000.

When lost income is taken into account mum of two Karen Cowley calculated the cost of her breast cancer amounted to over $234,000.

Medical bills not covered by Medicare or health funds total over $3700 on average for women using private health insurance — 10 times as high those who go public.

And women who’ve struggled with the financial shock are warning the 17,000 women who will be diagnosed with breast cancer this year to think twice about using the private health system.

Women don’t realise they may not face a long wait for care at a public hospital, they say.

A Breast Cancer Network Australia survey of 2,000 women provided exclusively to News Corp shows the out of pocket fees mount even before diagnosis.

Christine Nolan, CEO of Breast Cancer Network Australia. Picture: Supplied

Hefty fees of up to $1,200 for diagnostic MRI’s, mammograms and ultrasounds are not fully covered by Medicare and bulk billing rates are just 56 per cent.

Out of pocket fees for surgeons can exceed $6,000 and private radiotherapy treatment is not covered by health funds.

Life saving cancer medications like palbociclib not funded by the PBS can cost over $5,000 a month and plastic surgery to reconstruct their breasts can leave them up to $15,000-$20,000 out of pocket.

Oncotype DX tests to determine whether chemotherapy is needed to beat the cancer cost $5,000 and there is no Medicare rebate.

But even women who use the public system don’t get their treatment for free with the report showing they will face of pocket bills totalling over $3,600 for their care.

Some public hospitals have been charging for chemotherapy and other cancer related medicines.

Women who have private radiotherapy also face substantial out of pocket costs.

There are also monthly prescription fees of $38 for hormone replacement therapy, gap fees for specialist consultations of between $100-$200 every three to six months.

Scans can leave women $1,200 out of pocket. Picture: iStock

Hidden costs of breast cancer total $3,200 including childcare, counselling, accommodation and travel costs, higher energy bills to keep patients comfortable, new clothes for a new body shape.

The BCNA has a 14 point plan to solve the financial crisis facing women including requiring health funds to make a $5,000 trauma payment to help cover out of pocket costs.

There should be Medicare rebates introduced for breast MRI’s and the rebate for breast reconstruction of just $1,000 for surgery that can take in excess of 8 hours should be increased.

There should be free parking for cancer patients at hospitals and a special metastatic cancer card similar to the Veterans Affairs card should allow patients discount medical services.

“Some women find that paying for cancer treatment and its associated costs pushes them to the brink,” the report says

“They are forced to rely on government benefits, charity handouts and emergency help from family and friends and the community to get by,” the BCNA says.

At the same time as they were trying to cope with massive medical bills the total number of household hours worked dropped by 50 per cent in the first year after a diagnosis.

Some hospitals were charging for chemotherapy. Picture: Supplied

Patients in NSW recorded highest out of pocket costs of $20,910 while the median out of pocket cost was $6,381.

Queensland recorded the second highest out of pocket cost of $18,147 while the median out of pocket cost for the state was $5,203.

Victoria recorded the third highest out of pocket cost of $16,869 while the median costs were $5,432.

In South Australia the highest out of pocket cost was $14,242 while the median was $5,287.

In Tasmania the median out of pocket cost was $9,928 the highest in the country, while the highest out of pocket bill in the state was $13,667.

In The Northern Territory the highest out of pocket expenses was $10,151 and the median cost was $6,609.

In Western Australia the highest out of pocket expense was $11,349 and the medical was $4,656.

‘I WAS PRETTY DISTRESSED’

Mother of two Sussan Myall had to extend the mortgage on her home by $24,000 to pay for her breast cancer treatment.

The Sydney nurse had to deal with two bouts of breast cancer in 2015 and 2016 with a double mastectomy required last year.

To minimise her time off work she opted to have a transflap breast reconstruction performed at the same time as the mastectomy.

Sussan Mayal is a survivor of breast cancer but had huge out of pocket expenses. Picture: Jonathan Ng

Before the surgery she had to pay her anaesthetist $7,000, and the two surgeons involved in the operation each charged her $11,000 upfront for the 12 hour operation.

In addition Sussan says she had to pay over $1,500 in out of pocket expenses for mammograms and ultrasounds to diagnose her breast cancer and every time she sees her oncologist and her breast surgeon it costs $170 but Medicare provides a rebate of just $70.

GPs and surgeons should provide women with a clearer picture of the waiting times in public hospitals and the difference in cost before they make the choice to use the private system, she says.

“I was pretty distressed, shocked, it was a major thing to be told you would need a double mastectomy,” she says.

She thinks women should be given better information about public hospital waiting lists, the full gamut of out of pocket expenses and offered other choices at diagnosis.

I RAIDED MY SUPER TO PAY

Karen Cowley, who was diagnosed with metastatic breast cancer in 2006, calculates she’s spent over $41,000 on out of pocket medical bills over a decade.

The breakthrough medicine Kadcyla she needed was not on the PBS at first and the bills for that treatment cost her $18,600.

Melbourne mum Karen Cowley is a breast cancer survivor. Picture: Jay Town

She had to raid her superannuation to pay for the bills.

Even though she had been a successful product manager for over 22 years the company she worked for refused to act on her request for part time work and she was marched off the premises without even being allowed to say goodbye to her work colleagues.

Now she’s relying on a part disability pension.

“I was working full time and had long service leave and annual leave and in that respect I was lucky, if you were a young woman without that the financial stress would be horrendous,” she said.

‘I HAD TO PAY A FORTUNE’

Mother of two Sharyn Morcom was left thousands of dollars out of pocket when she was diagnosed with metastatic breast cancer in 2009 and had a mastectomy.

Sharyn Morcom, with son Brodie Morcom. She was diagnosed with early breast cancer just before Christmas in 2008. Picture Michael Franchi

Sharyn says she decided to use her private health insurance to pay for her treatment but discovered it didn’t cover all the bills.

“I saw ladies going through the public system paying nothing, all their scans were free, all their doctors were free and they all had the same doctor as me and I paid and they didn’t,” she said.

She was even more annoyed when she discovered women treated in the public system were getting extra services she couldn’t access

“They were getting access to dietitians and psychologists for free and if I wanted to do it I had to pay a fortune and it wasn’t an option we could afford,” she said.

If she had her time over she says she would do more research and “probably go public rather than private in hindsight”.

‘WE COULDN’T EVEN AFFORD MILK’

Queensland recorded the second highest out of pocket cost of $18,147 while the median out of pocket cost for the state was $5,203.

Brisbane mum Susan Knight walked for two hours to get home from her medical appointments at the Princess Alexandra Hospital 11 kilometres from her home because she couldn’t afford her breast cancer medicine and the bus fare.

Susan Knight could not afford the medicine and bus fare for treatment. Picture David Clark/AAP

Diagnosed with stage 3 breast cancer in 2009 she used the public hospital system but still faced charges of $35 for her chemotherapy and other drugs.

The former teacher’s aide had serious adverse reactions to her chemotherapy and burnt her hand as a result further adding to her health bills.

She had to stop working as a result. Her sons were heavily involved in playing rugby league and she made sacrifices to pay the associated fees to keep her sons involved in sport.

Her house was burgled just before Christmas and the thieves stole the furniture and electronic goods she had purchased with the money she was given to compensate her for abuse she suffered as a ward of the state.

‘We ate vegemite sandwiches for Christmas dinner, we couldn’t even afford milk,” she said.

“There is nothing to support families in crisis, they should have a free bus to pick you up and free medication for everyone,” she said.