A national survey conducted by the Consumers Health Forum of Australia, and released on Thursday, found out-of-pocket medical bills exceeding $10,000 have become common place for patients with breast cancer and certain chronic conditions such as multiple sclerosis.

The Out of Pocket Pain survey drew 1200 responses and showed despite having health insurance, many people still had to pay thousands of dollars out of their own pockets for critical surgery, other treatment and diagnostic scans.

Out of pockets medical costs are those additional expenses for treatment inside or outside of hospital which are not covered by health insurance or Medicare and which consumers are required to fully pay, or where they paid a gap for services attracting a Medicare and/or health insurance rebate

Extra costs included diagnostic imaging, non-surgical specialists, anaesthetists, medication and, for people travelling to get care, transport , accommodation and parking expenses.

The survey supported an independent website being established outlining the fees and charges of individual specialists and allied health professionals. It also called for a Productivity Commission review "into the cause of this crisis and all aspects of private health".

Kathy, 50, said since she was diagnosed with breast cancer in 2016, her out-of-pocket expenses had reached about $18,360, forcing her family to dip into their savings and cut back on spending.

The costs including consultations with doctors, surgery, pathology tests, scans, x-rays and medication.

"I have also had incidental costs related to the treatment, approximately $1000. This includes post- surgery bra, wig, head ware and scarves, and gym membership – to do pilates and yoga to help with the joint pain resulting from my treatment," she said.

"I have had to purchase new clothes, as I lost weight and my clothes no longer fitted, this cost has not been included. A further financial cost has been from not working during my treatment."

Kathy said she would have had fewer costs has she gone through the public health system.

"However being a private patient I was able to have my choice of specialists, certainly the wait for surgery and treatment was minimal, and, importantly, I could have a double mastectomy and immediate reconstructive surgery," she said.

The mother-of-three intended to keep her private health cover, because it gave her choice and peace of mind should she need more treatment in the future.

"I was able to choose my doctor and I wouldn't change that at all," she said.

Consumers Health Forum chief executive officer Leanne Wells said the responses to the survey gave a "disturbing insight into the high costs of medical care and challenge the notion that everyone can access the care they need in Australia".

"We have heard from pensioners and single mothers who have foregone recommended care because of cost, from many people exasperated to find that the insurance they have held for many years will not cover gaps of thousands of dollars, from patients who learn belatedly of unexpected extra costs for junior surgeons, anaesthetists and MRI scans, and from people who have had to call for special access to their superannuation funds to cover the bills," she said.

Ms Wells said that the Consumers Health Forum conducted the survey to provide a strong consumer perspective to the Federal Government's expert committee chaired by Chief Health Officer Brendan Murphy which is examining out of pocket costs.

"While the survey was largely responded to by people with private insurance, the plight for many uninsured people is likely to mean a choice between high out-of-pocket costs for private care or significantly longer waits for treatment in public hospitals," she said.

Australian Healthcare and Hospitals Association chief executive Alison Verhoeven said even when patients did shop around, they could be notified after the event that their treating specialist used the assistance of another health service provider whose bill wasn't covered by private health insurance or Medicare.

"The fact that some patients are dipping into superannuation to pay five-figure medical bills shows how some out-of-pocket costs are getting out of hand," Ms Verhoeven said.

"It also shows that the Australian Government would benefit from including more consumer and patient organisations on its review committees if they want to know first-hand the impacts the current system is having on ordinary Australians.

"The current out-of-pocket costs review committee is dominated by doctor organisations, private health providers and private health insurers—the very people who benefit most from leaving the system as it currently is."