Man with rare condition issues plea to HSE to fund drug access episode artwork

EPISODE · Jun 17, 2026 · 11 MIN

Man with rare condition issues plea to HSE to fund drug access

from Lunchtime Live

Lunchtime Live were contacted a few days ago by a concerned uncle who shared the deeply personal story of his nephew Barry, who has a rare genetic condition called Von Hippel-Lindau syndrome, which causes tumours to grow uncontrollably in his body. To make matters worse, a new drug used to treat the condition called belzutifan isn’t available in Ireland, despite being allowed in the UK and Northern Ireland. Barry joined Andrea to discuss the impact his condition has on his life and what access to the Drug would mean for him.

Episode metadata supplied by the publisher feed · Published Jun 17, 2026

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Man with rare condition issues plea to HSE to fund drug access

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