Breast cancer patients dumped by Medicare
WOMEN with breast cancer are being left in the lurch after surgery with no Medicare rebates for key treatments, six-year waiting lists for breast reconstruction and no subsidies for life-saving medications.
The Breast Cancer Network Australia (BCNA) State of the Nation report on the disease has found breast cancer nurses are not available for women whose cancer has spread beyond the breast.
One in five women with breast cancer will develop painful swelling in their arms called lymphoedema as a result of surgery but subsidies for aids and physiotherapy they need to control the pain are inadequate.
There are no Medicare subsidies at all for many tests, treatments, psychological help and physiotherapy women need after their initial cancer treatment.
The BCNA surveyed 15,000 of its 120,000 members about their experiences before drawing up an 8 point action plan for governments that will be released in Canberra today (Wed).
While an average of 90 per cent of women with early stage breast cancer are alive five years after their diagnosis, BCNA CEO Kirsten Pilatti said there are still "unacceptable gaps in treatment and care".
The BCNA survey found Medicare rebates for a series of scans to diagnose and monitor breast cancer were inadequate or non-existent.
Across the country one in four women treated in private hospitals have out of pocket expenses greater than $21,000 in their first five years after diagnosis because Medicare and health fund rebates are inadequate.
In Queensland some women have been waiting more than six years for breast reconstruction surgery in a public hospital after a mastectomy to treat their cancer.
"I am disappointed that I have now been on a waiting list for six years for breast reconstruction and have not had any contact whatsoever by anyone. So I guess I just keep waiting - maybe one day I will be put back together," one woman told the BCNA survey.
Despite the complexity of treatment faced by women with metastatic breast cancer - cancer which spreads beyond a woman's breast - they have less access to breast cancer nurses during their second bout, the report found.
They also had difficulty affording high cost life-saving treatments which often take years to attract a government subsidy.
One in every eight women will develop breast cancer in their lifetime and the BCNA has called for major policy changes.
To reduce 'bill shock' the BCNA wants the government to establish a government portal to help consumers compare fees for common breast cancer tests and treatments against Medicare rebates.
It wants Medicare rebates improved for scans needed to diagnose and monitor breast cancer.
Australia's breast reconstruction rate after mastectomy has fallen behind international standards and the BCNA says waiting times for this surgery need to be cut.
Specialist lymphoedema clinics need to be set up in all metropolitan and regional cancer centres and Medicare should fund the $250 compression garments women need to replace every three months, the group says.
Women also need more help with psychological support to cope with life after breast cancer, the BCNA says.
Emily Chinn was initially told by doctors she was too young at age 26 to have cancer when she developed discomfort in her left breast and an ultrasound showed nothing,
When further testing revealed she had the disease, she was devastated.
Seven months of chemotherapy, six weeks of radiotherapy, a mastectomy and treatment with the drug Herceptin followed.
While the cancer is gone Emily has been left with painful and chronic Lymphoedema in her arm which has to be strapped in a compression garment every day to control swelling.
There is no help from Medicare with the cost of the $250 garments that must be replaced every three months and Emily, who is studying to become a teacher finds it had to meet the $1,000 a year bill.
While she received initial help with the cost of appointments with a psychiatrist to help her deal with her lack of energy and fears of cancer returning she now has to pay for psychological help out of her own pocket.
"I think there needs to be an understanding and awareness that once you finish treatment you don't automatically feel like your old self," she says.
Once the support of regular doctor's appointments dropped off patients were left worrying whether the cancer would return, fearing it had every time another health problem developed and had to work hard to get their life back on track while feeling fatigued and battling side effects of their treatment she said.
Emily supports the BCNA's all for more help for survivors of breast cancer.