The cost of breast cancer on your health and your pocket book

To watch Leonie tell her story, click here.

In November 2011, I was diagnosed with stage 3 aggressive breast cancer. As soon as I was diagnosed I asked the doctor to give the names of surgical oncologists at St Vincent’s Hospital. To me it wasn’t about dwelling on what I had just been told. What was important to me was to accept the diagnosis and get on and do what was needed to fight it.

The thought of how much this was going to cost me never crossed my mind as I sat with the doctor in her rooms. I had held private health insurance for more than 30 years and paid taxes all of my working life, starting at the age of 16. I believed that the system would look after me, and so the thought of having to pay for my medical treatment was not on my radar whatsoever. I also thought that the Federal Government expects people like me, who work and pay for private health insurance, to utilise the private health system so as not to place any additional burden on the public health system. Upon leaving the doctor’s rooms I went o the receptionist, who said, “That will be $1,200, thank you”. I just looked at her with astonishment. I did undergo an ultrasound and needle biopsy. However, the payment of $1,200 seemed extreme. The receptionist advised, “You will  receive $100 back from Medicare”! Yeah!

Four days later I was in seeing my surgical oncologist at St Vincent’s Private. Yes, I elected to go private, as I have been paying for my health nsurance for years and I did not want to wait to see a specialist and also wait for surgery. My daughter came along with me to this appointment (my rock of Gibraltar!). We both listened to my surgeon explaining that an option could be undergoing a lumpendectomy as the tumour was isolated in one location.

As soon as my surgeon finished explaining the procedure, my daughter Ebony piped up and said, “Listen here, this is my mother’s life, we are not going to play Russian Roulette with her life, she is going to have a double mastectomy and while you’re at it give her a hysterectomy, as she has problems down there also!” Yes, I had had a pap smear test that showed up abnormal cells a month earlier and had undergone a Letts Procedure. All fine now, as I think the chemotherapy did a double whammy! Back to the surgeon’s room, it was agreed that I would undergo a double mastectomy with reconstruction. On my way out I saw the receptionist – “That will be $225 thank you, and you will get $80 back from Medicare” – it just keeps on getting better! However, my surgical oncologist did not charge above the Medicare fee for the double mastectomy. How fortunate I am, I thought to myself at the time, as I had no idea what was in store for me a couple of months later.

The next medical test that I was required to undergo was a sentinel node biopsy – not very pleasant, but very necessary for the surgical oncologist toidentify if any cancer cells had spread from the tumour, and if they had, the scan would assist in identifying which lymph nodes and region of the body the cancer cells had spread to. Finished the scan, out at reception, “$900 thank you! Oh you may get back $200, however if you have a health care card it will be no cost”. No I don’t have a health care card, but I am in a health fund and I pay taxes – “sorry, nothing we can do”.

My next appointment was with my plastic surgeon. We discussed the pros and cons of the surgical options and it was agreed that I would have a tram flap reconstruction procedure. Out at reception, “That will be $220, and you will get $65 back from Medicare”. By now any spare funds that I had were gone and my credit card was quickly being maxed out!

29 November 2011, after the surgery, I am in ICU. All is good, the surgery was successful, the tumour removed. However, pathology tests identified that I had stage 3 aggressive breast cancer. Fortunately for me no cancer cells had travelled to any of my removed lymph nodes. So the decision for the double mastectomy was the right one.

We go into surgery believing that it will be ‘just this once’. Well, reality is not as kind as we’d like to think. To date due to complications I have undergone five surgeries with at least another two to go! All of these surgeries have happened over a 15 month period, and I am not finished yet.

Two months after my mastectomy and while undergoing chemotherapy, I contracted a Golden Staph Infection and was rushed back into hospital in February 2012, just in the nick of time as I had acute kidney failure within an hour of arriving. It wasn’t looking too good there for a while, but due to the amazing doctors at St Vincent’s and the wonderful care and support I received, I pulled through after several dialysis sessions, blood transfusion and two additional surgeries to cut away the infection. For this stay in hospital I was not charged by my surgeon or anaesthetist.

However, the medical bills started to pile up and before Christmas I submitted an application to the Early Release of Superannuation Branch at the Department of Human Services to access my superannuation to pay for my medical costs. It was estimated that I would need $35,000. Applying for my superannuation to be released was a very taxing and distressing time. Here I was diagnosed with a life threatening illness, undergoing radical surgery and invasive treatment, but expected to collect letters from doctors, specialists, bank records etc. for my application to have my superannuation funds released to pay for my medical costs. It took me six months to get these monies released; it was one of the most horrible experiences I have ever had to endure!

As a result of the Golden Staph Infection, to date I have now undergone five surgeries with my sixth scheduled for 21 March 2013. This will not be my last. Each surgery after the February 2012 admission has cost me a considerable amount of money. Although my hospital stays have been covered by my health insurance, my surgeon and anaesthetist fees have been only partly covered by Medicare and my health insurance.

What has been of great distress to me as a single mother was that I had to access my ‘nest egg’ to pay for my medical treatments, as no lending institution was prepared to give me a personal loan. As I am still not out of the woods with regards to ongoing surgery and my illness, I am required to undergo regular pathology tests costing $234, go to specialist appointments costing $200 and take life-saving medications that cost $150 per month. The financial burden that has been placed upon me is extremely difficult. I am, however, fortunate that my surgeon is aware of my circumstances and does not charge exorbitantly and allows me to pay his fees gradually.

What the general public doesn’t understand until they or someone close to them is diagnosed with a serious illness is that the cost of the life-saving medical treatment soon becomes a shock, as life-saving medical treatment does not come cheaply in Australia. Some people have had to sell their homes, miss specialist appointments, declare bankruptcy and stop taking medications due to the spiraling costs.

I too have missed getting prescriptions filled due to lack of funds and I have even stopped taking one of my medications as it was costing along with my other medications $190 per month. To date I have had to pay out over $32,000 in medical costs. My health insurance company reimbursed me $6,000 of this after my story was told by journalist Sue Dunlevy in an article in the Sunday Telegraph on 18 November 2012.1 Ask yourself, is this what it takes for health insurance companies to realise that the $4 billion yearly subsidy they receive from the Federal Government, along with the fees they charge their customers, should actually go to those in need and not shareholders!

I have been lobbying politicians, requesting that Australians young and old who are diagnosed with a life threatening illness or chronic disease be provided with a health care card at a minimum to assist these individuals and families with the spiraling costs of life saving medical treatment.

To date no political party has shown any interest, even in this year of a Federal Election. However, I will continue to champion this issue.

Leonie Havnen is a 52 year old single mother of two, with a daughter, Ebony (23) and a son, Riley (19). She was born and raised in Sydney and lived in Darwin for 13 years, Melbourne for ten years and Broome for one year before returning to Sydney in 2004. She works as a Human Resource Manager for the Department of Defence. She enjoys participating in fun runs and triathlons, and next year will participate in three marathons, Uluru, Polar Circle and New York, to raise money for a Breast Care Nurse in Alice Springs for the McGrath Foundation. 1 Dunlevy, S. 2012 ‘Medicare rebates don’t keep up with inflation and families struggle with medical bill’, The Sunday Telegraph 18 November 2012. Online at http://www.dailytelegraph.com.au/news/ sydney-news/medicare-rebates-dont-keep-upwith- inflation-and-families-struggle-with-medicalbills/ story-e6freuzi-1226518805473. Accessed 8 April 2013

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