Life-saving treatment 'too costly'

Caitlin fights to make meds for ultra-rare disease available

- BY DEBORAH CICUREL

AN Irishwoman who has a deadly ultra-rare disease has been told by health chiefs that the only potentially lifesaving treatment is not “cost-effective” enough.

Caitlin Monachan had suffered with health problems since her teens with no explanation, and only got an answer when she reached her 20s.

Caitlin, 26, who works as front of house for a restaurant chain in Belfast, had been struggling with high cholesterol, fragile bones, blood not clotting, and enlarged spleen.

But it wasn't until she was referred to a chemical pathologist consultant at the Belfast Health and Social Care Trust in 2023 for her high cholesterol level, that she realised she may have an ultra-rare genetic disease.

Following genetic testing in January 2024, it was confirmed on January 14 that Caitlin had ASMD Niemann-Pick Type B.

ASMD Niemann-Pick is an inherited condition that causes progressive damage to organs like the liver, lungs and spleen.