Over the past three years, South Australians Harry and Audrey Wynbergen have spent more than 580 nights away from their home on the state's beautiful Yorke Peninsula, and travelled around 18,000 kilometres... but not for pleasure. Instead it was to access life-saving cancer treatment.
Audrey, now 74, was diagnosed with acute myeloid leukaemia (AML) in May 2017. The couple are from a small coastal town and as there are no blood cancer treatment options available in the region, the couple had to relocate to Adelaide for treatment immediately, where they were able to stay at the Leukaemia Foundation.
Blood cancer is now one of Australia's most commonly diagnosed cancers and unfortunately, the risk of diagnosis increases for some blood cancers in Australians over the age of 55, and this rises even more in the over 70 age group.
Just one month later, Harry, 76, was diagnosed with melanoma and also had to begin treatment.
Audrey and Harry were both lucky to go straight onto trials. Audrey was put on a trial for a new drug in combination with the drug assasydaneine and the results proved positive - but that same drug showed adverse results in other patients who had been on the trial for some time, and the trial was stopped. Audrey continued on the drug assasydaneine, which was available but not yet on the PBS and which involved injections into her stomach.
At that time assasydaneine was going to cost the pensioners between $4000 and $5000 each month.
"It wasn't on the PBS but we obviously wanted to keep going on it," Harry said. "Luckily - because Audrey had such a good result on the trial, the drug company decided to supply it free of charge."
"Initially, they only gave me 3.5 months to live. But I achieved remission. Without the trial I would be gone," Audrey said.
Audrey is among the lucky few. Less than 20 per cent of Australians living with a blood cancer today have participated in a clinical trial and only 1 in 5 who want to enrol in a trial, have access to one.
Harry also signed onto a two-year immunotherapy trial in August 2017 after he was diagnosed with Stage 4 melanoma. He saw results almost immediately. After three months his melanoma had reduced by 13 per cent. After six months it had reduced by around 27 per cent. Today it has progressed no further and Harry continues to have six-month CT scans. The trial finished last August.
Today, the couple are counting their blessings - but they still have to travel 600 kilometres every six weeks to access ongoing maintenance treatment for Audrey, because it is not available in a regional centre closer to their home.
Breaking down these barriers in accessing treatment for regional and remote Australians will be a priority for the Leukaemia Foundation as part of September's Blood Cancer Awareness Month.
Last year the Leukaemia Foundation commissioned the release of the first State of the Nation: Blood Cancer in Australia which led to Federal Minister for Health, Greg Hunt supporting the establishment of the Blood Cancer Taskforce.
Among the report's key findings was the gap in survival rates between patients in regional and metropolitan areas and across different states and territories.
"Four in ten Australians diagnosed with blood cancer live in regional and remote areas, and more lose their life to the disease than their city-based counterparts - simply due to challenges in accessing treatment and care," Leukaemia Foundation acting chief executive Alex Struthers said.
"The State of the Nation report also showed us that more than half of all regional and remote blood cancer patients are more likely to wait over a month to see a haematologist after presenting to a GP, and a third are unsure about their treatment plan. One in four of these patients also don't know where to go if they have more questions about their blood cancer."
Four in ten Australians diagnosed with blood cancer live in regional and remote areas, and more lose their life to the disease than their city-based counterparts - simply due to challenges in accessing treatment and care.
The report showed regional blood cancer patients aren't receiving the crucial diagnostics and specialist care they need, when they need it, and are more likely to face barriers in getting this care.
"We have strong health systems across Australia which are achieving remarkable results in improving survival rates and treatment for people living with blood cancer, but we need to continue to reduce variations in standards of care and clinical practice between states and between regional and metropolitan areas.
Ms Struthers said by breaking down these barriers and removing these variations, Australia could minimise mortality and potentially save up to 22,000 lives by 2035.
In Australia today, there are more than 110,000 children, parents and grand-parents living with a blood cancer. By 2035, that number is expected to climb to 275,000 Australians.
Blood Cancer Stats and Facts[i]
When combined, blood cancers are among the most frequently diagnosed cancers in Australia, and the most significant cause of non-preventable cancer death.
Every year, 17,321 Australians are newly diagnosed with blood cancer such as leukaemia, lymphoma and myeloma. This is equivalent to 47 people every day or one person every 31 minutes.
Over the past 10 years, incidence of blood cancer has increased by over 30 per cent.
Over 5,600 people in Australia are expected to lose their life to blood cancer or related blood disorders this year. This is equivalent to 15 people per day in Australia.
Blood cancer is one of the highest causes of cancer death in Australia, claiming more lives than breast cancer and melanoma combined.
Blood cancer does not discriminate. It can develop in anyone, at any age and at any stage of life
There are no screening programs for blood cancers, and there is no way to prevent blood cancer through lifestyle change.
Find out more about the Blood Cancer Awareness Month and the Leukaemia Foundation at www.leukaemia.org.au.