Rare cancer advocate steps up as PVI President with HTA reform in her sights

The Patient Voice Initiative (PVI) has found its new President: Sarah McGoram, a Canberra-based mother, school teacher, and rare cancer warrior.

McGoram’s story is a masterclass in relentless patient advocacy. Living with the rare disease Gastrointestinal Stromal Tumours (GIST), she has been a lifeline: linking patients to clinical trials, uncovering pathways to new treatments and building support communities in the past 15 years. Her work earned her an Order of Australia Medal in 2023, a rare honour that speaks volumes about her impact.

“Our voices as patients and carers matter because they ensure that decisions about medicines and health technologies reflect what truly matters to people living with illness,” McGoram said.

In 2010, when her husband and nine of his relatives were diagnosed with Fabry disease, McGoram’s advocacy took on a new dimension. She plunged into the complex world of health technology assessment (HTA), championing affordable access to life-altering therapies not just for her family, but for all affected.

“As a patient, I have faced the challenges of not being able to access affordable medicine for my rare cancer. I have also advocated for my husband as he navigated treatment access through the Life Savings Drugs Program and subsequent treatment through the HTA process,” she said.

McGoram steps in at a critical time for Patient Voice Initiative. The organisation continues to support patients navigating the HTA landscape and is pushing hard to see the latest policy and consumer co-design recommendations put into action.

Ann Single, CEO of Patient Voice Initiative and President of HTAi, has recently warned that without sufficient resources, the HTA reforms risk stagnation – with devastating consequences for patients and families. Delays drain the energy and resources of patient advocacy groups and risk eroding the trust of the very communities they serve.

This is especially relevant as the Department of Health faced a 6%-10% reduction in internal resources from 1 July 2025, with more reductions anticipated in 2026-27.

“I look forward to being part of an organisation that equips patients with the knowledge and confidence to navigate and influence health technology assessment processes.  By making these processes more inclusive, transparent, and accountable, we can help deliver real results for patients,” McGoram stated.

Her appointment follows the departure of founding President Jessica Bean, a fierce advocate for those living with Cystic Fibrosis, who after nine years is passing the torch but will remain engaged through the Advisory Committee and the Patient Voice Podcast.

McGoram described Bean’s leadership as having “made a significant impact on patient advocacy in Australia”.

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