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An Open Letter to the Australian Huntington’s Community

On 23 March 2021, the news began rolling out across the world that Roche would stop administering the treatments or placebos to patients in the GENERATION HD1 trial. More information will become available in the next weeks and months. The news from the study data analysis this week, however, suggests that in the current GENERATION HD1 trial, there is not enough benefit from the drug to support continued treatment. Roche is clear that the reason for stopping the drug does not relate to new concerns about the safety of the treatment. Importantly, Roche has not said they are stopping its HD program overall. The coming months may reveal Roche’s plans for HD following GENERATION HD1.

Since the news from Roche came out, Australian clinicians, state organisation leaders, and Huntington’s researchers have been meeting on teleconferences to discuss what this means for the Australian Huntington’s disease community. We share your disappointment at the sudden news that the treatment aspect of the trial has been stopped. But we also remain optimistic about the future.

 

What does this news from Roche mean for the HD community?

The Roche trial will leave us all with many valuable learnings to apply in future trials. And many more very promising treatments are being explored in research studies. For example, here in Australia, we have two very important trials underway across five sites in four cities: Brisbane, Sydney, Perth and Melbourne. These trials are sponsored by Wave Life Sciences, a company based in Boston, USA. Wave is getting ready to start a third trial, which will also roll out in Australia. Outside of Australia, at least 10 more HD trials are underway or getting started, all with significant financial investment. We have a lot more treatments to try, and research will continue until treatments are found.

We are very grateful to those people who have volunteered for our HD clinical trials so far, and to the many of you who have participated in research. Australia is a key research hub, recognised internationally for our work in HD. We need the Australian HD community to continue giving their time and energy, so that together we can move closer to treatments that make a real difference for families with HD. Everyone can help. This includes people with HD, their family members, clinicians and support workers of all kinds, and our state organisations.

Across Australia, we are committed to making things better for families with HD, with better treatments, care, and support. Despite the very disappointing news this week, we remain full of energy, and we will continue to work as a united Australian community to do whatever is necessary so that every person who is affected by HD can live their best life.

 

Written collectively by the CEOs of Australian Huntington’s Associations with leading national HD clinicians and researchers

Huntington’s NSW ACT, Huntington’s WA, Huntingtons Queensland, Huntington’s SA & NT, Huntington’s Tasmania, Huntington’s Victoria

 

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