Helen Maguire MP calls for faster access to treatment for people with Huntington’s disease.

On Wednesday 19 November, Helen Maguire MP will speak at an event in Parliament hosted by the Huntington’s Disease Association, urging the government, NHS and regulators to ensure that any future treatment for Huntington’s disease reaches patients without unnecessary delays.

The event will bring together people affected by Huntington’s disease, their families, carers, clinicians and researchers to discuss the progress being made in finding a treatment. This includes encouraging early results from the AMT-130 gene therapy trial, which slowed the progression of Huntington’s disease by around 75% in participants.

Huntington’s disease is a rare, inherited neurodegenerative condition that gradually affects movement, cognition and mental health. Every child of a parent with the faulty gene has a 50% chance of inheriting it. For many families, that means living with the daily reality of caring for loved ones while knowing they may face the same future.

Helen Maguire MP said:

“We are finally seeing hope on the horizon for people with Huntington’s disease, but hope must be matched by action. When a safe, effective treatment becomes available, it is essential that patients don’t face unnecessary delays caused by red tape or a lack of coordination between the NHS, regulators and government.”

Among those attending the reception will be Carly Evans, 32, from St Thomas in Swansea, who tested positive for the Huntington’s gene in 2020, the same condition her father is now living with.

Carly said,

“My dad is battling the disease right now, so I look after him. It can be a lonely and isolating world sometimes. Huntington’s disease affects my dad, me, and everyone else in my family. It’s a cruel, destructive disease. When I heard there was a breakthrough in research, it gave me hope”

The Huntington’s Disease Association supports families across England and Wales who are affected by this devastating disease.

Cath Stanley BEM, Chief Executive of the Huntington’s Disease Association, said,

It’s wonderful to see people coming together today to discuss how we can better support those affected by Huntington’s disease. This condition touches entire families, and every bit of understanding and support matters. We are determined to make sure that when a treatment becomes available, everyone who can benefit from it will have the chance to access it”

We look forward to sharing more about the event next week.