Tasmania loses its only Huntington’s disease Specialist as community calls for urgent government action 

Budget cut leaves Tasmania’s HD community without local specialist support 

Huntington’s Australia is making an urgent public appeal to the Tasmanian Government after being forced to cut the state’s only dedicated Huntington’s Disease (HD) Specialist position. This critical service collapse is due to the non-renewal of an agreement with the Tasmanian Department of Health, set to expire in December 2025. Without immediate funding renewal, Tasmanian families impacted by HD will lose access to their sole local specialist.  

“This was an incredibly difficult decision,” said Julie Neil, Head of Community Programs at Huntington’s Australia. “We’ve done everything possible to maintain this role, but without confirmed funding, we cannot sustain it. For a state facing one of the highest rates of HD globally, eliminating our only full-time specialist is the complete dismantling of essential, local support.” 

A disease rooted in Tasmanian history 

Huntington’s disease has deep roots in Tasmania. The condition was first introduced to Australia when a woman from Somerset, England, migrated to Launceston in 1842. Today, the state has the second highest rate of HD in the world per capita (after Venezuela). Around 150 Tasmanians are living with the disease, with hundreds more at risk. 

“Tasmania’s historical connection to Huntington’s disease makes this loss even more devastating,” Ms Neil continued. “Families are already travelling long distances and facing enormous emotional and physical strain. Continued government support is not optional. It is critical.” 

Continuing remote support 

While the local position will end, Huntington’s Australia will continue providing remote support through its national HD Specialist Team, led by Community Programs Team Leader Monica, and Support Coordinator Tamara, based in Hobart. 

“We’re ready to work with the Tasmanian Government on a sustainable funding solution,” Ms Neil said. “Our community cannot wait another year. Continuity of care is essential.” 

Huntington’s Australia stresses that while remote support will continue to be provided nationally, the complete absence of a local, full-time specialist is devastating for high-needs clients who rely on complex face-to-face planning and coordination. The organisation is actively meeting with government personnel, but long-term support remains unconfirmed. 

Huntington’s Australia urgently calls on the Tasmanian Government to immediately commit to a sustainable, long-term funding model to reinstate the HD Specialist role and adequately serve this high-needs community. 

“We urge Tasmanians to contact their local MPs and the Minister for Health to share how the loss of local Huntington’s services affects them and their families,” Ms Neil said. “Community voices are powerful, and government needs to hear them.”