John Philip is determined to stay alive.
The 38-year-old and his wife Jodi live with their two sons aged nine and 10 in the suburb of Panania, south-west of Sydney.
John loves taking his boys to the movies and kicking a ball around with them. He and Jodi had hoped to take them overseas and teach them about other cultures, but those plans were put on hold in 2013 when John started getting pains in his chest.
A scan showed he had a mass near his gallbladder but doctors couldn't say what it was.
John underwent surgery and doctors removed his gallbladder and two parts of his liver.
"I asked the doctor if it looked like cancer," Jodi recalls. They told her not to worry until the pathology results came back.
But the news was catastrophic.
John had a rare form of gallbladder cancer that had spread to his local lymph nodes. Doctors told him he would need chemotherapy but it was mostly precautionary and would likely stop the cancer in its tracks.
John Philip. Source: Supplied
John started six months of treatment and slowly his condition began to improve. The couple, who have been married for 13 years, were hopeful.
But in early 2015, John got the devastating news that his cancer was back and had become more aggressive. Doctors refused to tell him how much time he had but said the average life expectancy of someone with his disease was one to two years.
"I was absolutely, completely devastated," John says.
"[During] the first round of chemotherapy we could always hold onto hope that there was nothing there and it was just precautionary. This was a baseball-bat to the face."
After that, the couple put their energy into researching treatments and drugs that could give them better news, spending hours online and talking to doctors, specialists and friends. Their oncologist told the couple about a relatively new drug called Panitumumab that had shown promising results in people with John's condition. They decided John should go on it as soon as possible, but there was a catch. Panitumumab is currently not listed on the PBS for the type of cancer John has and would cost a lot to purchase.
"[During] the first round of chemotherapy we could always hold onto hope that there was nothing there and it was just precautionary. This was a baseball-bat to the face."
Their oncologist estimated the family would need $64,000 to buy the product for the amount of time John would need to take it. Unable to afford it, they online to raise the money.
They have so far raised $31,000 of a $64,000 target.
Booming market
The Philip family is among millions around the world to use crowdfunding websites to raise money for medical treatments.
Kelsea Little, a spokeswoman for crowdfunding website GoFundMe, told SBS that the site's "Medical, Illness and Healing" category was its most popular, ahead of "Education" and "Emergencies."
"Fundraising for medical causes has been skyrocketing in popularity," she says.
Since the website was launched in 2010, there have been more than 1.8 million medical-related campaigns on it, which have collectively raised more than $472 million.
The website's most successful campaign, "" - aimed at raising money for a clinical trial to help a four-year-old girl with an incurable genetic disease - has raised more than $1.8 million alone.
But why are such campaigns necessary in Australia? A place where Medicare, health insurance and the Pharmaceutical Benefits Scheme (PBS) all work to protect patients from excessive medical bills.
The campaign to save four-year-old Eliza, who suffers from a rare genetic disease called Sanfilippo Syndrome, has been shared more than 50,000 times online. Source: YouTube
According to Richard Vine, of advocacy group (RCA), people like John Philip make up a small portion of Australians who are falling through the cracks because of the obscurity of their condition.
“Our current health system is very much focused around the principle of the greatest good for the greatest number,” he says.
Mr Vine says it is difficult to get new drugs that might be effective in treating rare cancers listed on the PBS because at times there isn’t even enough cases of that cancer in the world to make up the numbers for a clinical trial.
"There’s also very little commercial imperative for pharmaceutical companies to even attempt to get a drug listed because by definition it’s rare therefore the market is small," he says.
Senate inquiry
Earlier this year an Australian was held into the availability of cancer drugs in Australia and RCA was among 205 specialist organisations and individuals to make submissions.
A report with the inquiry’s findings, released in September, stated that there was “widespread concern that Australian cancer patients continue to face significant delays and expenses in accessing new cancer drugs or existing drugs that are not available under the PBS for their form of cancer.”
It noted that “lack of access to subsidised cancer medications has a disproportionate impact on the quality of care for patients with rare and less common cancers.”
The Senate inquiry heard from a number of cancer patients and their families about the stress of trying to access life-saving drugs. One such patient, Naomi Brugger, told the committee she had been running a campaign to raise money for her husband’s treatment and had so far raised $60,000.
“That has been very hard-going,” she said. “I have run the campaign mostly by myself, so that means I have been away from the boys as well. So they are not only missing out on dad; they are missing out on mum, who is trying to keep dad alive.”
"There's also very little commercial imperative for pharmaceutical companies to even attempt to get a drug listed because by definition it’s rare therefore the market is small."
In its report, the committee recommended the government conduct a comprehensive review into how medicines are registered and subsidised in Australia, stressing the need for greater transparency in the process.
Following the report, Federal Health Minister Sussan Ley issued a statement saying the PBS was a “world-class” system that “balances[s] fast access to the latest drugs for patients with strict public safety protections that are based on clinical evidence, not just the claims of drug companies.”
“I make no apologies for this,” she said.
Ms Ley said the government had proved its commitment to speeding up the process of listing drugs on the PBS, with 798 "new and amended drug listings” added to the PBS since the 2013 federal election.
She said drug companies often delayed bringing new medicines to Australia because they wanted to make applications in the more-lucrative US and European markets first.
“This delay is something I am determined to overcome and I am currently working with the entire pharmaceutical chain, including consumers, to institute reforms,” she said.
In a statement to SBS, the minister said the Government would "consider the recommendations of the Senate Committee of the report" but said a number improvements were already underway.
Tim James, CEO of , which represents the pharmaceutical industry in Australia, says he is encouraged by the government's focus on advancements - Malcolm Turnbull " in his first speech as prime minister - and hopes it will translate into action.
"We really welcome the focus on innovation, on creativity, on Australia positioning and punching above its weight in this part of the world," he says. "That's a very sound ambition and something that is achievable in the healthcare space."
'Cancer capital'
The rates of cancer in Australia are high. Half of all Australians will develop some form of it in their lifetime and one in five will die of it.
The most common cancers in Australia are prostate, colorectal, breast, lung and melanoma of the skin.
Under the current system, anyone that has a Medicare card can access drugs subsidised under the PBS for a range of conditions including cancer. Patients pay a contribution of the cost and the rest is subsidised by the government. The system was originally designed to protect patients from huge medical costs.
"This delay is something I am determined to overcome and I am currently working with the entire pharmaceutical chain, including consumers, to institute reforms."
The only way a drug can be listed on the PBS is if it is approved by the (PBAC), which is made up of government-appointed doctors, health professionals and consumer representatives who meet three times a year.
Patients can also access drugs in a small number of cases through the (LSDP) whereby the government subsidises a small amount of life-saving drugs that are not on the PBS. The government currently subsidises 10 medicines under this scheme.
Richard Vines, of Rare Cancers Australia, says patients can sometimes also access medicines directly from the pharmaceutical industry in what is known as "".
But he says these schemes are not widely publicised to oncologists and the application process is often difficult.
"We recently conducted a survey that indicated many oncologists don't routinely apply for compassionate access," he says. "The reasons for this underutilisation includes lack of publicity about schemes, lack of readily available clinical data and incredible workloads on clinicians. [The] Government needs to understand that an industry's compassionate access scheme is not a solution for patients in need."
The Philp family tried to access medication through a compassionate-access program but was turned down.
Mr Vine says the PBS, while beneficial, is often unnecessarily clunky in dealing with rare cancers. For example, he says drugs are often listed for the treatment of one cancer when they could be beneficial to treating other cancers as well. Despite that, those drugs cannot be administered for the treatment of other cancers until they are approved for them specifically, and that process can take years.
Mr Vine cited a "revolutionary new drug" that was recently listed for melanoma as an example.
“It got through really quickly for melanoma because it works on a specific cancer mechanism rather than a specific area of the body but it is also likely to work for up to 30 other types of cancer," he said, adding that it could take up to five or six years for the same drug to get approved for the treatment of rare cancers.
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Very sick to benefit from PBS review: Ley
“You could have a situation where two people - same age, same occupation, same tax contribution to the country - are both diagnosed with different cancers on the same day - one common, one rare - and go to the same oncologist and are prescribed with the same medicine. But one will have it for the PBS payment of $39 a month and the other will face [a bill of] $6,000-$7,000 a month."
He rejected the argument that it would not be economically viable to cater for everyone equally - cancer medicines are some of the most expensive medicines on the PBS.
"You can't reasonably say to someone who has contributed fully to society over their entire life, that just because they were unfortunate enough to get something rare, that we are as a community are just going to abandon [them]. That's just not acceptable in an ethical or moral sense."
The kindness of strangers
It seems like every day there's a new crowdfunding campaign appearing on Facebook or being written about in the media.
A , a US man who was shot seven times trying to protect students at an Oregon community college after a shooter opened fire, raised more than $US 500,000 in 24 hours.
But with little regulation, there are few safety measures in place to ensure the campaigns are genuine.
"With millions of campaigns, it's not feasible for GoFundMe to investigate the claims stated by each campaign organiser," says GoFundMe spokeswoman Kelsea Little.
"Rather, we provide visitors with the tools to make an informed decision as to who they chose to support."
She says there was also no process in place to check where the money goes.
"It's up to the campaign organiser to decide how to use the funds," she says. "If we receive any reports of misleading or untrustworthy behaviour, our team investigates right away."
Jodi Philip says the platform has been comforting for her family because the health system leaves people needing unsubsidised drugs with few options.
John in his backyard earlier this year. Source: Supplied
"There are people out there who don’t have the capacity to fundraise for treatment and they die," she says.
John says his treatment has taken a financial toll on his family but the real impact was bigger than that.
"If I think about what we do as a family, and it's all disease related," he says. "It’s all boring, difficult, horrible...doctors, oncologists, visits to various places. And all of that would have been replaced with visits to the movies and visits to water parks, holidays and things like that."
He has recently stopped chemotherapy after developing side-effects that left him feeling like he permanently had pins and needles in his hands and feet. "The toxicity has built to a level in my body where I need a break," he says.
But he continues to work part-time and keeps looking forward amid the weight of his condition.
"There are moments where you hear a song or watch a movie or something sparks a little something in your brain that says, 'I'm going to die; this is probably going to kill me'. Those thoughts come forward through all the positive support, a lot.
"It's incredibly taxing and emotionally very difficult, [but] I'm very lucky. I've got two little kids who are really happy, I’ve got a good job and my wife is second to none with her support and her good nature.
"Without those things, I'd be a mess."
