Fight to kick rare cancer: Coast woman in plea for help over costly treatment

KETRINA Baird has only one hope of recovery after being the second person in Australia diagnosed with an extremely rare form of cancer, unfortunately, that hope comes at a price. 

KETRINA Baird has only one hope of recovery after being the second person in Australia diagnosed with an extremely rare form of cancer. 

Unfortunately, that hope comes in the form of an experimental treatment that costs about $20,000 a pop.

She and her friend Suzy Smith are advocating to have a broader range of chemotherapies covered by the Public Benefits Scheme (PBS).

In May 2019, Ms Baird, 52, was given the life-changing news she suffered from leiomyosarcoma (LMS).

A Tamborine local, Ketrina Baird, is fighting an extremely rare form of cancer called Leiomyosarcoma. She is the second Australian to have ever been diagnosed. Picture Glenn Hampson

The cancer attacks involuntary muscles and often develops aggressive tumours in the abdomen. A handful were found in the bottom of Ms Baird’s spine and lung – they have since been found in the abdomen and further along the spine.

Allergic to two previous rounds of chemotherapies, Ms Baird’s options have been limited to an unfunded trial chemo treatment known as trabectedin (Yondelis).

“Due to the rare form of cancer my treatment is not only complicated but is also not funded by the Australian government,” the Tamborine resident said.

“Without funding, I cannot receive the chemotherapy I urgently require. Instead I have had to pay $20,000 per round which has put me in debt.”

The drug is only approved for use in Europe, Russia, South Korea and the USA, and is not covered by the PBS in Australia.

“Katrina was caring for her mum who also has cancer when she was diagnosed,” Ms Smith said. “She is a beautiful, kind, giving, and passionate friend to so many.

For over two decades she has created a community around her passion for singing and entertaining, hosting karaoke shows across Australia. Now it is our turn to help her.

"Ketrina was operated on to remove the cancer in her pelvis but she still faces a fight in her lungs, so the treatment has to continue. Without funding, Ketrina cannot receive the medical treatment she urgently requires."

Ms Smith has been raising money to help her friend with medical treatment and associated costs and has set up a GoFundMe page.

Ketrina Baird said she is now in debt in order to pay for the cancer treatment she needs. Picture Glenn Hampson

The pair will write to the federal government for a change in policy regarding the use of trabectedin (Yondelis).

Under legislation, medicines can only be subsidised through the PBS if the Pharmaceutical Benefits Advisory Committee makes a recommendation in favour of listing.  Yondelis® has not been approved by the Therapeutic Goods Administration as a treatment.

MORE WOMEN'S HEALTH NEWS: Cancer survivors  banned from Facebook for sharing breast cancer recovery photos

CANCER survivors on the Gold Coast say they have been unfairly banned by a social media giant for sharing photos of the mastectomies or breast reconstructions to a private group.

Founders of Women’s Cancer Support GC Sandra Johnston and Nicole Drummond say they have been frustrated by repeated warnings and bans from Facebook due to links and photos they and other members have shared.

The images which depict either scarred breast tissue, tattooed nipples, reactions to treatment or reconstruction surgery, have all been flagged as nudity or sexual content by Facebook.

Both women say in addition to warnings, they were then given bans lasting up to three days from posting – with no option to appeal.

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Spokesman Nicole Drummond (centre) and members of the Womens Cancer Support GC protesting at their treatment by social media giant Facebook. Picture: Glenn Hampson

Mrs Drummond, who is a cancer survivor herself, said every time she attempted to explain her case, she would receive a message that said there were fewer reviewers available due to COVID-19 and therefore no one was able to follow up.

“There is nothing we can do and as a predominantly breast cancer group, we need these images,” Mrs Drummond explained.

“It’s a private group and everyone is screened to ensure they are female, live on the Gold Coast and have cancer.”

Because of the bans, both women who are administrators in the group were unable to monitor posts for a time.

“A lot of women have had mastectomies, myself included. The photos show you what to expect after reconstruction,” she said.

“It’s really scary, we are told they can use our stomach, or even our back to make new breasts. So to be able to see what a stomach boob looks like is really beneficial if you are contemplating a 12-hour procedure.”

Members are also being warned for positing photos of themselves when seeking advice.

“For example, a member posted a picture of a red raw breast that has had radiation.

“The poor lady is in excruciating pain and wants to know what she can do and has anyone had that happen before.

“It is necessary for our group to be able to post photos for this reason.”

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The link to a breast cancer website that set off nudity flags at Facebook

Sandra Johnston, who is also the face of the current Breast Screen Queensland Campaign, said she has been banned three times in the last month with no review.

One instance was for posting a live video of a local breast surgeon discussing surgery options.

The most recent incident involved a ban for sharing a link to a legitimate breast cancer organisation page which illustrated reconstructions.

“Breast cancer is not sexual,” Ms Johnston said.

“How can people who advocate for something as important as this be banned from supporting women with breast cancer.

“We need to be able to share photos to support the newbies in particularly when they first receive this crap diagnosis.”

Sandra Johnston said breast cancer survivors are constantly getting banned from facebook for up to a week for sharing photos of their before and after surgeries. Picture: Jerad Williams

Facebook Australia has been contacted for comment and are currently investigating the matter.

Under its nudity policy Facebook states it has a “nuanced approach”.

“We understand nudity can be shared for a variety of reasons, including as a form of protest, to raise awareness about a cause or for educational or medical reasons. Where such intent is clear, we make allowances for the content.

“For example, while we restrict some images of female breasts that include the nipple, we allow other images, including those depicting acts of protest, women actively engaged in breastfeeding and photos of post-mastectomy scarring.”

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