Griffith couple Naomi and Chris Brugger, representing My Name is Chris, handed over a petition with thousands of signatures to the Federal Minister for Health and Sport, Sussan Ley and Member for Riverina, Michael McCormack at a private meeting earlier this week.
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The petition, which attracted close to 4000 signatures, was created in an attempt to encourage the Pharmaceutical Benefits Advisory Committee (PBAC) to place Brentuximab Vedotin on the Pharmaceutical Benefits Scheme (PBS) when the committee meets this month.
“Chris and I have a lot going on at the moment with being parents, the petition, the fundraising campaign and working,” Mrs Brugger said.
“Some days and nights have been pretty long. We both believe that some sacrifice is needed to reach our goals and sleep has been one of those sacrifices,” she said, of getting the huge amount of signatures on the petition.
Brentuximab Vedotin is offering hope and a good chance of long term survival to relapsed and refractory Hodgkin’s Lymphoma patients, but comes with a hefty price tag.
Creator of the petition Mrs Brugger said she and the other members of My Name if Chris were compelled to at least try to convince the PBAC to place Brentuximab on the register after seeing how difficult it was for patients to obtain access.
“Chris and I have known of the successes of the drug with relapsed and refractory Hodgkin’s Lymphoma fighters by keeping up to date with the latest research,” said Mrs Brugger.
“In December Chris was told he now needed to access this drug but given it was not covered by the PBS, we had to self-fund.
“We are fortunate enough to have incredible friends and a wonderful community to support us in our fundraising efforts, but we know there are many people out there without that support and know of patients who have died because they could not afford it,” she said.
Currently one vial of the drug is $5300 and depending on the weight of the patient, up to four vials could be needed totally $21,200.
Mrs Brugger's husband, Chris has had two doses of Brentuximab and it has been nothing short of life changing.
The Bruggers decided to take matters into their own hands and wrote a lengthy submission to the PBAC and started the petition, which gained signatures from all over Australia and overseas including the UK and USA.
“An original target was set at 1500 however that was reached within a week.
“We decided to aim for 5000, just falling short – but we are amazed that we had such a strong response given the relatively small number of people who need access to Brentuximab,” Mrs Brugger said.
“I started Brentuximab in January and the change was almost instant. Now two doses later I am working part time for the first time in 11 months, I am physically active, all the symptoms have subsided, my blood tests have been fantastic and most importantly, I am able to play with my sons," Mr Brugger said.
“One question we were asked was why we spent so much time on this when even if the decision was favourable, it would be too late for Chris.
“Our response was simple: If we can help save just one life, give hope to just one person, then we would do everything in our power to do just that.
“My Name is Chris is not just about Chris and our personal cancer battle – it is about raising awareness, helping people to take control of their health and realise there are other options out there. We know this is so much bigger than us,” she said.
My Name is Chris is currently fundraising to provide this potentially life-saving drug to Mr Brugger, however the group have long term goals to help others in the same situation.
“From the outset, the founders of My Name is Chris have had our eye on what we can achieve in the long term,” said Mrs Brugger.
“We have three phases – the first to fundraise to save Chris, the second to lobby the PBAC to place Brentuximab Vedotin on the PBS and the third is to set up a My Name is Chris foundation.
“There is a lot of work to be done, but the founders are a passionate bunch and are determined to reach our goals.”
The PBAC meet this month with the outcomes released on April, 24. If Brentuximab is not listed on the PBS, the My Name is Chris founders will continue to lobby in preparation for the PBAC’S next meeting in July, 2015.
You can help support the campaign by visiting www.mynameischris.com.au or calling 0412 419 447.
