The Snowy Flamingos Cancer Support Group decided to do a survey of members about their out-of-pocket medical costs after being contacted by the Consumers Health Forum of Australia. It was seeking information for its recently published Out of Pocket Pain report.
The Snowy Flamingos information was not separately detailed in that report.
So Partyline has reproduced in full for a fascinating and detailed look into the costs of becoming critically ill in a rural town.
The Snowy Flamingos are based in Victoria’s far east, in the town of Orbost, East Gippsland. Orbost is on the delta of the Snowy River, not far from the Bass Strait. It’s a centre for farming/grazing, sawmilling and National Parks tourism.
Fourteen Snowy Flamingos took part in the survey and offered to detail their out-of-pocket medical costs.
They include people with private health insurance, and those going through the public health system.
The Region’s Health System
Orbost has a population of 2,000 people, and offers a major hospital and oncology service through the town’s main health hub - Orbost Regional Health.
It has a 15-bed acute ward, outpatients, aged care services, medical and dental, community health programs and provides outreach services to some surrounding communities. There is also a videoconferencing facility for remote consultations.
People can access visiting clinicians at Orbost Regional Health.
But to access major radiology, x-rays and other treatments, people have to travel further west to the main East Gippsland centre of Bairnsdale, toTraralgon in the La Trobe Valley, or to Melbourne.
Orbost Regional Health found that between 2008 and 2018, 52 individuals were diagnosed with cancer.
The McGrath Breast Care Nurse, based at Bairnsdale, visits Orbost about every three months. She is very supportive of the Snowy Flamingos Cancer Suuport Group, providing accurate advice to our members.
There are 42 Snowy Flamingos, all of whom are out-of-pocket for their health care.
Fourteen were generous enough to provide details of their out-of-pocket costs.
Out-of-pocket costs – the detail
- Pre-operative scans and tests
When diagnosed with cancer there are a number of tests and scans required prior to commencing surgery. When undertaking these tests as a private patient, the expenses are required to be paid up front and then claimed back afterwards. One person reported that they paid up to $3000 up front for pre-operative scans and tests. There is confusion about what is covered by private health and what is covered by Medicare. If the scans are conducted prior to surgery and not included in the hospital stay, often the health insurer will not pay. Prior to any surgery, patients are now required to negotiate with surgeons about out-of-pocket costs. - Travel to specialist appointments
People in Orbost can travel by car or train to specialist appointments. There is State Government-funded travel reimbursement available. However, if travelling to Bairnsdale for oncology or specialist appointments, we live five kilometres short of the 100 kilometre minimum distance, and thus cannot claim for fuel or train / bus travel. In order to claim, we would have to travel another 120 kilometres to Traralgon, or an extra 300 kilometres to Melbourne. - Accommodation/Billeting
Pre-operative preparation requires rural people to stay close to the treating hospital. Not everyone has family to stay with and they need to pay for billeting or accommodation. Traralgon Hospital has accommodation nearby that is funded by Rotary – Centenary House. This is wonderful and the price is reduced in this case. Traralgon Hospital is the closest radiotherapy service to Orbost. Some Melbourne hospitals assist in some form for accommodation, however there are still out-of-pocket costs, which are often unpredictable, due to the length of hospital stay. - Separation from loved ones.
Some hospitalisations and treatments require people to be separated from their loved ones. In the case of elderly people or those on pensions / benefits, it can be financially difficult for family to stay with loved ones being treated for cancer.
During Initial surgery and hospital stay
- Breast Surgeon
Out-of-pocket costs need to be negotiated with a breast surgeon, and often include payment for the assistant surgeon and the anesthetist. Private health patients reported paying up to $500 for a breast surgeon and up to $360 for the assistant breast surgeon. - Scans and tests
Some procedures such as bone scans, MRIs and other tests are not covered by health insurance or Medicare. These can cost hundreds of dollars. Not all individuals can afford the upfront costs related to these tests, however are trapped in the situation where the tests are required for further diagnosis and treatment. - Phone Expenses
Contacting hospitals and specialists sometimes require patients to be on the waiting queue while trying to organise appointments, surgery, etc. This is a cost often not counted for patients in rural areas. - Car parking
Most hospitals provide car parking, however people are still required to pay. Some people reported car parking costs of up to $80 per day.
Post-operative Care
- Travel to appointments
Some people had to travel as far as Berwick, on Melbourne’s eastern edge, or to Melbourne proper for post-operative appointments. If there is post-operative infection, travel is also required, including air ambulance in case of emergency. - Medicines
Post operative antibiotics and pain relief are some examples of out-of-pocket costs. Not all medications are covered by the PBS. A patient may also have to change medications due to side effects. - Post-operative dressings
Costs associated with District nurse visit for dressing care and management of drains. - Emergencies and unexpected treatments
Cancer patients have low immunity and have to take care to avoid infection. One person reported being sent home from Melbourne to Orbost on the train (eight hours) with a drain in place – she developed a life threatening infection the next day and was rushed by air ambulance for urgent treatment.
Another person reported that she paid out-of-pocket ultrasound expenses for blood clots, and antibiotics for infection in the operation site. - Prosthetics
One Snowy Flamingo paid $425 for an artificial breast. If damaged through sport etc, they need to be replaced. Private health covers one prosthetic every two years. There are extra costs associated with buying special bras and bathers which can accommodate prosthetics. - Lymphodema
Breast cancer survivors have trouble with fluid retention often requiring visits to an occupational therapist, physio or massage therapist. There are extra costs for compression garments - Home help
People with metastatic cancer can be immobilised requiring special equipment, like a walker, and home help. For example, the farm of one NSW survivor known to the Snowy Flamingos is five kilometres out of the catchment area for publicly subsidised home help. Her only option was to hire private home help.
Chemotherapy
This treatment is given by IV injection in a chemotherapy unit. The treatment is designed to target cancer cells, and prevent their spread. The side effects include:
- nausea and vomiting;
- effects on the bowel;
- dizziness and feeling unwell; and
- lower immunity from decreased white and red blood cell counts.
Patients are at risk and need to seek urgent medical attention when they have a fever. If hospitalised, they need to be kept in special isolated care until their immunity rises and their infection is treated.
- Travel to appointments
As previously mentioned, the closest chemotherapy treatment is 95 kilometres away at Bairnsdale, so we in Orbost are ineligible for travel claims. - Unexpected emergencies
Patients often react to the IV treatment within the unit, and may have to have antihistamine treatments, along with a lower dose of the chemotherapy over a longer period of time. Sometimes the visits grow from six treatments to 16, so this can become emotionally and financially onerous for patients and their families.
If the patient develops an infection and fever, they need to be rushed to hospital, sometimes for a week. - Hair loss
Wigs can cost anywhere between a few hundred to thousands of dollars. Orbost patients can access a wig bank based in the town of Sale. It also sells soft hats and head wear. There is a service called “Look Good, Feel Better” that visits Bairnsdale, and teaches people about makeup, head wear and feeling brighter until their hair returns post chemotherapy.
Radiotherapy
Depending on the type of cancer, patients have to undergo between 25 and 30 treatments. The closest treatment centre is in Traralgon 160 kilometres away. Some people access radiotherapy in the Melbourne hospitals 400 kilometres away.
- Travel to appointments
Most who required radiotherapy had to travel. As this is a longer distance, travel reimbursement was easier to access. - Dressings
Radiotherapy side effects include burns that require treatment with daily dressings for around two weeks following treatment. It is common for people to pay for these dressings out of their own pocket. The dressings require gels/creams, along with non-stick dressings and tapes that are quite expensive. - Accommodation/Billeting
The people who attended radiotherapy at Traralgon could stay at Centenary House. This is partially funded, however, there are still out-of-pocket costs. For those who have extra treatments, the costs increase. - Anything else?
One person reported the cost of billeting their pets for extended stays away.
Nuclear medicine costs that are not covered by Medicare or private health.
Ongoing Care
Patients are required to follow up appointments with breast surgeons, oncologists and radio oncologists. There is the risk of recurrence of cancer so patients are monitored closely.
- Unexpected hospitalisations
Some people return to hospital for repeat radiotherapy (bones) or unexpected infections, with associated costs previously outlined. - Scans/Unexpected tests/blood tests not covered by funding
Some nuclear medicine scans and repeat mammograms are not covered by Medicare or private health. Some specialist appointments require an upfront payment prior to reimbursement. This is difficult for people on low incomes. - Medications
Medications can change according to response, and some medications are not covered by the PBS. The more aggressive the cancer, the more expensive the treatment. - Travel to appointments
Depending on the situation, some people have to travel as far as Traralgon (2.5 hours) and Melbourne (4.5 hours)
Reconstructive surgery and other operations
- Hospital costs
Private health generally covers hospital care. However, there are costs that aren’t covered by private health or Medicare eg some nuclear medicine scans. Reconstructive surgery is a major operation and requires about seven days hospital stay. - Surgeon fees
These need to be negotiated prior to surgery, as prices vary. The out-of-pocket costs for reconstructive surgery can be up to $8000. This includes assistant surgeon fees. - Anesthetist fees
These fees also need to be negotiated prior to surgery and can cost up to $200, depending on the anesthetist. - Medications
This includes pain medications, vitamins recommended by the surgeon, and antibiotics if required. - Special tapes/creams
Scar tapes can cost $50 for 2 metres. The tapes need to be applied to reduce scarring and assist in healing. - Follow up
More day surgeries, such as liposuction and more adjustments are included in follow up. These appointments may be included in the total fee of the reconstruction, or may be billed separately. Some reconstructions are provided in Sale (two hours away from Orbost) or Melbourne (4.5 hours away)
Other Comments:
- Chemotherapy drugs side effects meant meant monthly echo cardiographs that cost up to $350 per scan
- Blood clots during ongoing care required blood thinning injections at $36 per month
- Hormone therapy drugs used for five to ten years.
- Specialist visits during ongoing care always incur an out-of-pocket cost. Medicare does not cover total costs.
For a profile of the Snowy Flamingos click here.
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