From cancer patient to patient advocate

“We had a full life, running a B&B in Byron Bay and I was still working as an advertising photographer, so it took some time to get our heads around the devastating diagnosis.”

DAVID Young, aged 64 from Byron Bay, decided to follow doctor’s orders and started to have annual health checks from the age of 50, but after three years, his GP became concerned about his blood results and referred him to a haematologist.
In 2012 he was shocked to receive a diagnosis of Waldenström’s macroglobulinemia (WM), a rare type of non-Hodgkin’s lymphoma, and was told he only had two to six years to live and would need to start immediate intensive chemotherapy.
“My wife and I were knocked for six by the news and went on an emotional rollercoaster with our dreams of retirement, travel and growing old together smashed,” says Young.
“We had a full life, running a B&B in Byron Bay and I was still working as an advertising photographer, so it took some time to get our heads around the devastating diagnosis.
“I decided I needed to learn more about WM, so I spent a couple of days researching and discovered that the prognosis and treatment were not quite as dire as I had been told.”
At the time of diagnosis, he had no symptoms, but eventually he started to experience fatigue, anaemia, leg and foot cramps, and night sweats.
He started taking rituximab which helped with his symptoms for a few years, but then it started to wane. He continued his research and discovered a clinical trial for zanubrutinib (Brukinsa), which he enrolled in.
Within a couple of months his symptoms abated, and he has now been on zanubrutinib for four years and is “pretty close to remission”.
“I’m delighted that Brukinsa (zanubrutinib) has just received Therapeutic Goods Administration approval for the treatment of adult patients with Waldenström’s macroglobulinemia and also for adult patients with mantle cell lymphoma (MCL) – another type of non-Hodgkin’s lymphoma,” he says.
“Brukinsa has given me a life with very few side effects and is keeping me in remission. And as it’s a capsule, it’s non-invasive with no down time, unlike traditional treatment with intravenous chemotherapy and its well-known harsh side effects.
“Thanks to Brukinsa, I went from feeling sorry for myself to climbing Cradle Mountain in Tasmania, so I want other people to benefit from this targeted treatment that has given me so much,” he says.
On behalf of WMozzies, Young was delighted to be invited by the Pharmaceutical Benefits Advisory Committee (PBAC) to take part in a pilot program as consumer advocates in the Brukinsa PBAC decision process.
WM and MCL patients will have immediate free of charge access to Brukinsa through a BeiGene sponsored Pre-Reimbursement Access Program until such time that WM and MCL are listed for reimbursement on the Pharmaceutical Benefits Scheme.
In a first for the PBAC, BeiGene (who discovered Brukinsa) expect to enter a facilitated resolution pathway in order to seek a listing date for WM.
Young’s mantra for other cancer patients is to take charge of their life and to do their own research. He has been a cancer advocate since 2013 and is the team leader of WMozzies, a patient support organisation for WM.
He also works with The Cancer Council, NSW Cancer Institute, The Leukaemia Foundation and Cancer Voices NSW.
“I’m passionate about educating people about cancer and encouraging cancer patients to take responsibility for researching the latest information and treatments out there,” says Young.