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There's finally a treatment for my five-year-old's dementia - but it'll cost me £3m
Yahoo • • health
Key Points:
- Tate McDaid, a five-year-old boy from Swansea diagnosed with Sanfilippo Syndrome, a rare childhood dementia, requires a gene therapy treatment approved in the US that costs nearly £3 million.
- The treatment, FAYUVI, developed by Ultragenyx, is priced at $3.95 million in the US, and there is uncertainty about how families outside the US, including those in the UK, can afford or access it.
- Sanfilippo Syndrome causes progressive neurodegeneration, and early treatment is critical as Tate is already showing cognitive decline; the therapy could delay disease progression but is not yet available in the UK.
- Tate’s mother, Tammy, has raised over £160,000 but this covers only about 5% of the treatment cost, and she is seeking support and potential price reductions from the pharmaceutical company.
- Welsh health officials and Noah's Ark Children's Hospital staff are currently in talks with US counterparts to explore possible access pathways for Tate to receive the gene therapy.
