‘Unbelievably scary’: Patient had to pay $100k
AN AUSTRALIAN man has said the decision to pay $100,000 to self-fund his own treatment was more stressful than being told he had cancer.
The news comes as patients struggle to afford prevention treatment while regulators battle to keep up with the latest in breakthrough cancer research.
Peter Gourlay was initially diagnosed in 2014 after the discovery of a melanoma on his back. Then, in September 2017, the 66-year-old marriage celebrant found a "worrying large" lump under his arm that was diagnosed as a Stage 3 metastatic melanoma.
After undergoing a procedure in which 15 lymph nodes were removed, Mr Gourlay, from Melbourne, decided to self-fund the latest immuno-oncology treatment to prevent the cancer returning. He is among the first Australians to receive the treatment that experts say helps prevent recurrence of the melanoma.
Immuno-oncology is an important part of cancer treatment because the chance of recurrence sits at 50 per cent, often returning as Stage 4 and far more viscous.
Australia is described as the melanoma capital of the world with more than 14,000 Australians diagnosed each year from the cancer. It is the most commonly diagnosed cancer in younger Australians aged 15-29.
According to the Australian government, more than 1900 Australians are expected to die from melanoma this year while the Melanoma Institute of Australia says one person every five hours will die from melanoma in Australia.
"It's a sinister killer, it can re-emerge when you least expect it, it can sit quietly and dormant in your body," Mr Gourlay told news.com.au.
"I was told if it was going to recur it was probably in the first couple of years but it was three and a half years later that it popped out for me."
Mr Gourlay's treatment, Opdivo, was recently added to new clinical melanoma treatment guidelines developed by Cancer Council Australia and Melanoma Institute Australia. It is the first update in a decade.
Mr Gourlay's treatment has been found to reduce the recurrence of cancer by 40 per cent in these patients. Immuno-oncology treatments are designed to use a person's own immune system to beat the cancer by targeting the same immune pathways that tumour cells use to evade recognition and destruction.
Currently these medicines are only approved for subsidy in people with stage IV melanoma, advanced lung cancer and advanced kidney cancer, The Daily Telegraph reported last month.
Despite the new guidelines, some of the treatments, including Opdivo, are not currently covered by the Pharmaceutical Benefits Scheme (PBS), meaning the public are forced find alternative methods to receive and fund the treatment.
"I worried about it incessantly, the decision about what to do about my treatment got to the point where it was more stressful than being told I had cancer," Mr Gourlay said.
"It sounds ridiculous but there were some big decisions to be made. Yes, there was the money side but there was also the health implications.
"I don't want to be the unlucky one, the one in four that will get it again."
Since we’re getting into the summer - remember to use good sunscreen, stay in the shade when possible, and go to the dermatologist if you see anything abnormal.— Aureylian △⃒⃘ (@aureylian) June 14, 2018
My close call with melanoma was caught early enough that I only ended up with this beauty, but it could’ve been worse. pic.twitter.com/VPJI1iuVlR
The treatment was initially priced at $160,000 but through his oncologist, the manufacturers of the drug helped arrange a co-payment system while the treatment is considered for the PBS listing, which brought the cost down to $100,000.
In a bid to stay alive, Peter and his partner, Bernie, decided to use personal savings and his superannuation to fund the treatment.
If he underwent immuno-oncology treatment he would be cutting the odds of a recurrence to around 15 per cent. Without the therapy his odds looked closer to 25 per cent.
Mr Gourlay said it took him two months to make the decision, but in the end "it's life enhancing, it's promoting the prospects of a longer and healthier life and it increases my chances [to live]".
"What is the point of saving as much money as I can and dying sooner than I need to? It's just a shame we have to do it. $100,000 is still a unbelievably scary figure … but it was a no brainer," he said.
Along with the help from his family, Mr Gourlay was able to collect enough money to help share the costs. He pays $3900 every fortnight for the treatment, which consists of an intravenous infusion, which he will undergo for approximately 12 months.
"The hardest part was making the decision [to self-fund], it's a self sacrifice you make, sacrificing money, savings, you don't know what this might mean in the future if you need the money, but it seemed a pretty good investment," he said.
"Once I made the decision I stopped thinking about the money. I pay it, I've stopped thinking about it, now there's no point in worrying about it."
Dr Matteo Carlino, a medical oncologist from Westmead Hospital and the Melanoma Institute Australia, told news.com.au he would be "pleasantly surprised" if the treatment is approved by the PBS when it considers the treatment's listing in July. He described the approval process as "relatively complicated".
"The PBS listing that is being asked for is to decrease the risk of that melanoma recurring," Dr Carlino told news.com.au.
"The current situation with these people, essentially the chance of them being dead within five to 10 years in some patients is 50 per cent. The current treatment is to just watch them and hope, there's no effectively funded drug for this group of people and they have the highest risk of becoming stage 4.
"The data to prove this drug works is very new, the data to prove this drug decreases the risk of recurrence came out late last year and so it takes time. We don't know the answer to that but it's definitely not a foregone conclusion and by the law of averages the more likely response [from PBS] is that it will be knocked back first time around.
"I'm confident it will eventually happen on the PBS but my fear is it will take longer than we hope. Every year you delay is another thousand or so or more people who miss out."
July is the first time the PBS has reviewed the treatment to consider if they will fund it.
"I would imagine the PBS get a lot of applications, I guess they have to allocate the heath dollar as wisely as they can, I just know from my own perspective that there are a lot of people in my situation who have been diagnosed with advanced melanoma who have had surgery," Mr Gourlay said.
"This therapy could significantly reduce the chance."
Dr Carlino told news.com.au the treatment "is not an absolute guarantee that [the cancer] will ever come back but it drops it by half".
"Many hundreds if not over a thousand patients a year are not able to access this drug which is available in Europe and the US. There's no other way to do it. You have people talking about mortgages and things like that and that's the people who can actually do that, there's a group of people who can't afford it no matter what.
"The main message is to say to people who have had surgery to have the cancer removed, that we know there's a high risk of it coming back."
Mr Gourlay said he hoped by speaking out, it would help give members of the public more access to the treatment.
"Very few people can access it because of the costs," he said. "The fact I've had the support of my family, the fact I have super and savings that I can use to pay for it, I regard myself as very lucky, not privileged but lucky.
"To allocate that kind of money to treatment means I'm taking it out of my future savings, my future nest egg. Now that I've made the decision I don't think it's healthy to worry about it.
"I also recognise that the majority of the population are not in the situation I'm in and that's why I'm an advocate for it being listed [on the PBS].
"It's not just about self interest because it probably won't be any benefit to me once it gets through, one day if it gets through - whether it's this year or three year's time - it probably won't come in time to be of any financial benefit to me, but I'm a believer in the therapy and therefore I would like to see greater ease of access for other people where the burden is not so great."
Victoria Beedle, CEO of Melanoma Patients Australia, called for patient access to immunotherapy to be improved to reduce the impact of melanoma in Australia.
"While 'watch and wait' is the current standard of care for these patients, they deal with a tremendous amount of anxiety and fear of recurrence after surgery," she said.
"Adjuvant treatment is an important new option for patients and we would urge the PBAC (Pharmaceutical Benefits Advisory Committee) to consider this for PBS listing to ensure equitable access for Australian patients."