NeuroEndocrine Cancer Australia (NECA) is thrilled to announce the recent recommendation for listing on the Pharmaceutical Benefits Scheme (PBS) of a life-changing treatment (Belzutifan) for Von Hippel-Lindau (VHL) patients by the Pharmaceutical Benefits Advisory Committee (PBAC). When listed this significant milestone will see the cost of the treatment, previously $12,000 per month, reduced to just $7.70 for those holding a healthcare card, making it accessible to more Australians who desperately need it.
For years, treatment options for VHL have been severely limited, with patients often facing surgery or radiotherapy as their only options. These treatments, particularly surgery to the spine, come with serious risks, including loss of mobility, months of rehabilitation, and a range of other complications. The effects of VHL are far-reaching, impacting not only the spine but also the brain, eyes, hearing, kidneys, and pancreas, often leading to neuroendocrine cancer.
4 July 2024, NECA organised a Parliamentary event for VHL patients, their families and healthcare professionals, offering them a platform to share their experiences and discuss the challenges of living with VHL. The stories shared during this event underscored the urgent need for better treatment options. This event was well attended by many key stakeholders that were able to lobby to support VHL patients in lobbying to have this treatment expedited on to the PBS list.
Our Advocacy Efforts Include:
- Senate Inquiry Participation: Advocating for equitable access to diagnosis and treatment for rare and less common cancers, including neuroendocrine cancers.
- Patient Stories in the Media: Amplifying the voices of patients like Simon, Amelia, Ryan, Lana, and Vanessa through regional radio, newspapers, and national programs such as The Project.
- Promoting the House of Representatives Petition: Garnering 17,803 signatures in support of VHL patients.
- Parliamentary Event: Engaging key political figures, including Michael Usher, Zali Steggall, Ged Kearney, Sophie Scamps, Wendy Askew, Michaelia Cash, Henry Pike, David Smith, Elizabeth De Somer (CEO Medicines Australia), and Jamie Snashall (Minister Butler’s Senior Advisor).
- National Media Coverage: Highlighting the plight of VHL patients on nightly news, including an interview with NECA Ambassador Michael Usher.
- Ongoing Lobbying: Continuing to advocate for VHL patients in meetings with Members of Parliament.
- PBAC Meetings: Engaging with the Pharmaceutical Benefits Advisory Committee in July, leading to the recommendation for PBS listing on 23 August.
- Continued Media Presence: Ongoing national coverage, including a Seven News interview with Ryan, Lana, and NECA CEO Meredith Cummins on August 24.
Meredith Cummins, CEO of NeuroEndocrine Cancer Australia, expressed the organisation’s relief with this vital approval: “Having the decision by PBAC for this treatment to be recommended for listing on the PBS is wonderful – we are hopeful that it will be available before the end of the year, providing VHL patients and their families with renewed hope. This treatment can reduce the growth of life-threatening tumours and, in many cases, shrink them completely, sparing patients from surgeries that can severely impact their mobility and overall quality of life.”
She added, “We are so pleased to have been able to work with the VHL community, advocate for them, and achieve this outcome, which is long overdue for VHL patients. VHL is a devastating condition, and the VHL community deserves to have this treatment available to them, offering equity of access to care and hope for the future.”
NeuroEndocrine Cancer Australia remains committed to supporting VHL patients and will continue to advocate for improved treatment options and outcomes for all Australians living with rare and complex cancers.
