Labor, Coalition ignoring expensive and painful lymphodema in their election campaigns

Labor might have revealed their $2.3 billion cancer package that promises to slash out of pocket costs. But it doesn’t address the expenses that come with the painful condition one in five women develop after breast cancer surgery.

Exclusive: One of the most painful and expensive cancer problems has been ignored by both sides of politics this election and the Breast Cancer Network of Australia says it must be addressed.

Around one in five women with breast cancer develop chronic ongoing pain from lymphoedema, swelling of the arms as a result of surgery that removes lymph nodes but government subsidies for aids and physiotherapy are inadequate.

It’s a key problem that adds to lifelong out of pocket expenses women face after cancer treatment.

Around one in five women with breast cancer develop chronic ongoing pain from lymphoedema. Picture: Getty Images

The BCNA says the number of appointments with lymphoedema specialists covered by Medicare needs to be doubled from five to 10, specialist lymphoedema clinics need to be established in major centres and national subsidies must be provided for garments used to control the swelling.

“Breast Cancer Network Australia wants to see lymphoedema support services have its own Medicare item number so patients have access to government subsidised sessions when they need them,” said BCNA CEO Kirsten Pilatti.

Opposition Leader Bill Shorten has pledged to slash the out of pocket expenses for cancer patients but his pledge only covers specialist appointments, scans and blood tests.

The Coalition has so far refused to match Labor’s $2.3 billion cancer package.

A spokeswoman for health Minister Greg Hunt said responsibility for the provision of compression garments rests with the state and territory governments.

Opposition leader Bill Shorten has pledged to slash out of pocket expenses for cancer patients, but the Coalition has refused to match Labor’s $2.3 billion cancer package. Picture: AAP

Last year, Minister Hunt committed to working with state and territory governments to improve access to lymphoedema compression garment subsidies and create a national standard and to ensure equity of access.

Opposition health spokeswoman Catherine King said “Labor knows this is a major issue for many women who get breast cancer”.

“We will work with the BCNA, the states and other stakeholders to address this issue if elected.”

“Labor’s $2.3 billion Medicare Cancer Plan will improve care and drive down costs for women with breast cancer, as well as slashing public hospital waiting lists for women who need breast reconstructions,” she said.

Sydney nurse and grandmother Janine Johnstone has spent lots of money on specialist appointments and compression garments to manage lymphoedema following breast cancer surgery. Picture: Supplied

Sydney nurse and medical practice manager Janine Johnstone was diagnosed with lymphoedema immediately after a mastectomy to treat breast cancer.

The Denistone grandmother said the condition has ongoing costs and affects her life in so many ways from choosing clothes to undertaking her favourite activity of gardening.

“It makes it hard to buy clothes because I have one arm bigger than the other,” she said.

“I’m a keen gardener but I have to make sure I’m not pricked by a rose or get scratched because if I get an infection I’m at risk of cellulitis and that would see me in hospital hooked up to IV antibiotics,” she said.

After her breast cancer surgery Mrs Johnstone had to see a lymphoedema specialist weekly for three months then fortnightly for another three months.

Each visit cost $100 and her health fund only refunded $30-40 of the cost, today the bill can be over $180 a visit.

She also required regular massages to reduce the swelling. These cost around $100 per session today.

The cost of custom made compression garments to control the swelling can be as high as $550 a year and subsidies are different or non-existent depending on which state you live in.

In some states the subsidies cover only 40 per cent of the cost of the garments and they and means tested.

A 2013 study found one-third of those with breast cancer-related lymphoedema in Australia do not receive adequate treatment for their lymphoedema because it’s too costly and there are not enough specialists.

Ms Pilatti said she was pleased to see the Opposition has listened to the stories of people with a personal experience of breast cancer and put a plan in place to reduce the financial toxicity but more needed to be done.

“The costs of lymphoedema garments and consultations all add to the burden of a cancer diagnosis,” Ms Pilatti said.

“If we are serious about reducing the impact of cancer on Australians we need to put a plan in place to help those living with the challenges of lymphoedema,” she said.