contact us

If you have any questions, queries or thoughts don't hesitate to drop me a line.

If you can donate your time or goods for one of our events I would to hear from you... anything from the smallest to largest gift is gratefully appreciated.

 


Melbourne
AUSTRALIA

Press

HERALD SUN - 16.09.14

Sarah Austin

Cancer patient Sarah Austin raises $120,000 for life-prolonging treatment

Sarah Austin has raised $120,000 for drugs to treat Hodgkin's lymphoma. Picture: EUGENE HYLAND

Sarah Austin has raised $120,000 for drugs to treat Hodgkin's lymphoma. Picture: EUGENE HYLAND

SARAH Austin has been forced to raise more than $120,000 to get a life-prolonging cancer drug.

Through tireless fundraising, the 32-year-old has managed to pay for 12 courses but still has four to go.

The drug she needs, brentuximab vedotin (Adcetris), is approved for use, but is not government-subsidised.

The Leukaemia Foundation said despite it being the first new lymphoma treatment in a decade, many patients could not get it because of the lengthy approval process.

They either have to pay for it themselves, or be lucky enough to be one of those newly diagnosed who get it through involvement with a clinical trial.

“It’s a really expensive therapy, and for most people it’s just beyond their means,” said Dr Anna Williamson, the foundation’s head of research and advocacy.

“It’s a sad state of affairs when you have to fundraise for your own treatment.”

Dr Williamson supports a push by the Herald Sun and cancer groups to set up a scheme that allows patients to get drugs during the medicines approval process.

“Here in Australia, we don’t have access to most of these drugs unless a patient is on a trial. We have to wait until the companies have enough evidence from their trials to put to the Pharmaceutical Benefits Advisory Committee, who assesses its effectiveness and cost-effectiveness,” Dr Williamson said.

But it can be hard to gather this data. It takes a long time to recruit patients with less common cancers for trials.

“At the moment, the patients are losing because they have nowhere to go,” Dr Williamson said.

federal Department of Health spokeswoman said the drug had been recommended for listing on the Pharmaceutical Benefits Scheme twice, but at a lower price than the one proposed by the pharmaceutical company.

She said it might be possible for a patient’s treating doctor to apply to a hospital for help with the cost.

BY LUCIE VAN DEN BERG, Read the original here

LEADER NEWSPAPER - 27.08.14

Sarah Austin

Fight for Hodgkin’s lymphoma cure hits costly drug hurdle for Albert Park woman

Sarah Austin, 31, has been battling the blood cancer Hodgkin's lymphoma for years. She is hosting a trivia night to help pay for a course of drugs not covered by the Pharmaceutical Benefits Scheme. Picture: Ian Currie

Sarah Austin, 31, has been battling the blood cancer Hodgkin's lymphoma for years. She is hosting a trivia night to help pay for a course of drugs not covered by the Pharmaceutical Benefits Scheme. Picture: Ian Currie

ALBERT Park’s Sarah Austin, 31, has undergone multiple rounds of radiation, stem cell transplants and “more types of chemo than I can actually remember” in her five-year battle against Hodgkin’s lymphoma.

But, after each gruelling treatment, the blood cancer came back.

It was only when Ms Austin tried a new drug called Brentuximab vedotin that she saw a glimmer of hope — but the human rights lawyer must pay $180,000 for a full course of the drug, which is not covered by the Pharmaceutical Benefits Scheme.

“I’m very fortunate as I’ve had the ability to fundraise with the help of friends and family,” she said.

“For some people who don’t have that support, just imagine being told there’s this treatment available but it’s out of reach.”

Ms Austin, who grew up in Murumbeena, kickstarted her treatment with a $50,000 family inheritance, and drew on hospitality industry contacts to host a gala fundraising event.

She went into remission in December after four rounds of Brentuximab; she has now completed 12, and has another four to go — at $11,000 a pop.

Of all the treatments she has undergone, it has been “the easiest by far”.

“My hair has fallen out a bit and it makes you a little tired, but compared to the others it is easy,” she said.

“I feel really good.”

But she still has to raise more than $40,000 and will host a trivia night at her old school, McKinnon Secondary College, on September 6.

 

HELP SPEED UP PATIENTS’ TREATMENT

LEUKAEMIA Foundation Head of Research and Advocacy Dr Anna Williamson says cancer patients must be given quicker access to lifesaving drugs.

Dr Williamson said the dilemma faced by Albert Park’s Sarah Austin was all too common, because it took years for new drugs to make it onto the Pharmaceutical Benefits Scheme.

“It’s a real issue for a lot of people with blood cancers,” Dr Williamson said.

“At the moment, the only way a patient can access a drug that is not on the PBS is if they can access a clinical trial, but not everyone is eligible.”

Dr Williamson argued patients who, like Sarah, had not responded to traditional therapies, should be helped to access new drugs.

“We need some other mechanism for making these drugs available, while ensuring taxpayers are getting good value for money,” she said.

“Some of them (trial therapies) will be fantastic ... Some have changed blood cancers from killer diseases to chronic diseases,” - Dr Anna Williamson, Leukaemia Foundation

In England, she said, the multi-million-pound government-funded Cancer Drug Fund helped patients access treatments that are not yet covered by Britain’s version of the PBS scheme.

“The challenge for Australia is that we’re only a very small part of the global pharmaceutical market, so it is hard for pharmaceutical companies to get their drugs recognised and reimbursed here.”

Dr Williamson said cancer drugs were expensive to develop, with pharmaceutical companies typically investing about $1 billion and ten years for each new treatment.

She said the government must negotiate with the companies to ensure the cost of making drugs available was acceptable to the taxpayer, while improving outcomes for patients.

There were about 250 new therapies in trials for people with blood cancers, which made up about 10 per cent of all cancers, Dr Williamson said.

“Some of them will be fantastic ... Some have changed blood cancers from killer diseases to chronic diseases,” she said.

“They haven’t found a cure, but patients can have 10 or 20 years of good-quality life whereas in the past, they would have died within a couple of years.”

by DANA MCCAULEY, read the original article here  

 

 

Herald Sun - 21.11.13

Sarah Austin

Sarah's chance of a bright future

Sarah Austin has been battling Hodgkin's lymphoma since 2009. Picture: David Caird

Sarah Austin has been battling Hodgkin's lymphoma since 2009. Picture: David Caird

 

A VICTORIAN woman who has run out of cancer treatment options has only been able to access a $50,000 potentially lifesaving therapy after her family gave up their inheritance.

But now Sarah Austin's friends are giving back to their bestie by hosting a fundraising ball to ensure she has the greatest chance of a bright future.

The law graduate was diagnosed with Hodgkin's lymphoma, a blood cancer that affects the lymphatic system, four years ago.

She gave it everything - chemotherapy, radiotherapy and two stem cell transplants, one from her own body and another from a donor.

But the cancer has come back.

Doctors told Sarah Austin the best option for her was a new drug that offered her hope of more time or remission.

Brentuximab vedotin (Adcetris) is approved for use in Australia, but not government-subsidised. It cost $45,444 for just four doses.

The 31 year old was only able to afford to pay for the treatment because her grandfather passed away and her entire family donated their inheritance to her.

"It was a very weird situation to have to weigh up if a chance of life was worth that much money," Miss Austin said.

"I had to determine if I was going to spend my family's inheritance, my mum's retirement money, and it may not be successful. It was very difficult."

If the drug works, Miss Austin will not be able to afford to continue taking it as it would cost up to $200,000 a year.

She was frustrated to know it was more accessible in the US and Europe.

"We are supposed to have this amazing health care system, but there will be a point where people in other countries or those who are wealthy will be getting more of the drug than I because I've run out of money."

But she is buoyed by the support of her seven friends who are hosting a Bright Night Ball for Sarah's Bright Future on Saturday.

Her friend, Buddhika Sumana, said they were horrified to discover the cost of the therapy and determined to raise enough money to help Miss Austin afford the treatment.

By LUCIE VAN DEN BERG

see the original article here