Participants of two Leukaemia Foundation surveys have helped inform the Pharmaceutical Benefits Advisory Committee of the benefits of brentuximab vedotin, a potentially life-saving treatment for Australians diagnosed with a form of Hodgkin lymphoma*, supporting its listing on the PBS from April 1.

The PBS listing of brentuximab vedotin gives individuals with a rare sub-type of Hodgkin lymphoma access to potentially life-saving treatments that previously cost between $7,400 and $16,100 for a course.

Committed to improving the lives of people living with blood cancer the Leukaemia Foundation presented comprehensive consumer submissions to assist the Pharmaceutical Benefits Advisory Committee in its consideration of the two applications for brentuximab vedotin.

The Leukaemia Foundation undertook two surveys, the first in 2015 and another in 2016, seeking quality of life information from people living with relapsed or refractory Hodgkin lymphoma with 69 respondents providing insights into the severe and debilitating impact their diagnosis, or that of a loved one, had had on their life, work and career.

They also highlighted the significant inequities in accessing the latest available treatment with some people provided with the treatment on compassionate grounds while others had to raise substantial funds.

Those who could access brentuximab vedotin reported less disruption to their lifestyle as a result of fewer side-effects, that the treatment offered a bridge to transplant and the chance to stay alive and survive Hodgkin lymphoma.

The Leukaemia Foundation of Australia said the decision to list brentuximab vedotin on the PBS is truly wonderful news for people living with Hodgkin lymphoma and ensure equal access to the life-saving treatment for all Australians who require it.

“The PBS listing of brentuximab vedotin is wonderful news for people with Hodgkin lymphoma and this achievement demonstrates a successful united-front approach,” said a spokesperson.

“Together we can help elevate the vital needs of people impacted by a blood cancer diagnosis and achieve great outcomes for more Australian families.”

Each year in Australian, around 600 people are diagnosed with Hodgkin lymphoma and while it can occur at any age, it is most common in adolescents and young adults.

For many, a diagnosis of Hodgkin lymphoma impacts on every single aspect of their life and a life-saving treatment like brentuximab vedotin can become, quite literally, a matter of life or death.

Annamaria Gregorace of NSW was diagnosed with Hodgkin lymphoma at the age of 19. After chemotherapy and a stem cell transplant she enjoyed a couple of good years before relapsing in 2016. The Keynote 204 trial of brentuximab vedotin proved to be ‘the best treatment by a long shot’.

“I’m very excited to hear access to brentuimab vedotin has been expanded on the PBS,” said Annamaria.

“It proved to be such an easy treatment – and if it can work as well for others as it did for me – then this is a great result for people with Hodgkin lymphoma.”

For Jonathon Tarascio of Melbourne, Victoria, the whole experience of Hodgkin lymphoma has been ‘a rollercoaster ride” and an expensive one at that. Four cycles of brentuximab vedotin cost Jonathon (and his generous parents, extended family and friends) $42,000. It didn’t work but Jonathon is responding well to immunotherapy and he says it is important to keep trying and to be open to new therapies.

“The PBS listing of brentuximab vedotin not only gives Hodgkin lymphoma patients access to advanced treatments without financial limitations, but it also provides hope,” said Jonathon.

“Imagine, knowing there is a novel and relatively successful therapy available, but being denied access because it’s unaffordable.”

The Leukaemia Foundation is committed to improving the lives of people living with blood cancer and this is a great example of how collaboration is helping to make a real difference.

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*The listings are for the following two patient groups:
– patients with relapsed or refractory CD30 + Hodgkin lymphoma following autologous stem cell transplant (ASCT)
– patients with relapsed or refractory CD30 + Hodgkin lymphoma following at least two prior therapies when ASCT or multi-agent chemotherapy is not a treatment option.