In a powerful demonstration of solidarity and urgency, the Von-Hippel-Lindau (VHL) Awareness event held at Parliament House on 4 July 2024 brought together VHL patients, carers, and policymakers to advocate for the fast-tracked approval of Belzutifan, the only medicine showing significant promise in treating Von Hippel Lindau (VHL) disease.
The event, organised by NeuroEndocrine Cancer Australia, followed the overwhelming support evidenced by the House of Representatives Petition, which gathered 17,803 signatures. Invitations were extended to Members of Parliament from across Australia, VHL patients, and their carers. The event highlighted the desperate need for Belzutifan, a medication that has shown remarkable success in real-world evidence and clinical trials in shrinking tumours, halting their growth, and in some cases, making them disappear entirely, thus eliminating the need for future surgeries.
Watch recording of this event here.
A Groundbreaking Treatment
Ryan, a VHL patient, expressed the burden many feel:
Amelia, another patient, asked,
These personal stories underscored the urgency of making Belzutifan available through the Pharmaceutical Benefits Scheme (PBS). The inclusion of Belzutifan on the PBS would bring the cost down from $12,000 per month to a more affordable $7.70 for those patients with a healthcare card.
The real sense of hope and urgency of PBS approval around this ground breaking treatment was re-iterated by two of Australia’s leading experts in VHL.
Dr. Minmin Li, captured the hope that Belzutifan represents for VHL patients, “For the first time ever, we have disease control.”
Significant Attendance and Support
With over 60 people registered and many more attending, including Members of Parliament, Senior Advisors, and the CEO of Medicines Australia, the event showcased widespread support. Hon. Zali Steggall OAM MP hosted the event, with Hon. Ged Kearney MP, Assistant Minister for Health, officially opening it, and Michael Usher, the event’s ambassador, facilitating the panel discussion.
Lana, a VHL patient in attendance, shared her experience with MPs and MedNews, highlighting the impact the medication would have on her life.
Lana added,
“It (VHL) is a troll which attacks me again and again – there is never really a break because even when I don’t have imminent surgery on the horizon, I am dealing with deficits from previous ones and the underlying anxiety that comes from having an uncertain future.”
A Call to Action
We urge the Government to implement Recommendation 10 from the recent Senate Inquiry: 3.134. The committee recommends that the Australian Government utilise the Health Technology Assessment Policy and Methods Review to provide Australian rare and less common cancer patients with timely and affordable access to novel medicines.
Henry Pike MP emphasized the importance of grassroots advocacy, urging patients to contact their local MPs to influence an outcome.
A Plea for Equitable Access
Meredith Cummins, CEO of NeuroEndocrine Cancer Australia, stressed,
“Patients should not have to choose between available treatment or suffering without care because that treatment is completely cost prohibitive,” urged Zali Steggall, MP.
“I urge the government to act on the recommendations from the recent Inquiry into Rare Cancers, including Neuroendocrine Cancer, and list Belzutifan on the PBS.”
As the parliamentary bells rang, calling MPs back to their sessions, the stories of Ryan, Amelia, Chris, and others echoed through the halls, a compelling reminder that the approval of Belzutifan is not just a matter of policy but a matter of life and hope for many Australian families.
This event was kindly covered by the following media. The Nightly, ABC Radio, MedNews and BioPharma Dispatch
