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Emily’s Fight for Access to Life-Saving Drug | Cork News
Description
A determined woman from County Kilkenny, Emily Felix, is fighting for her life in court after being denied timely access to a life-changing drug for her rare disease. Diagnosed with Friedreich’s ataxia at 12, now 28, Emily relies on a wheelchair and needs help with daily tasks—but she’s also a working professional and law student. The drug, omaveloxolone (Skyclarys), approved in EU countries for teens and up, could slow her disease’s progression. The HSE delayed its decision for over a year, despite the manufacturer submitting a new proposal. Emily’s legal team argues every day counts—delay means irreversible damage. The High Court has granted her judicial review, ordering the HSE to finalize its decision and potentially provide interim access. Her case, set for September, is more than a legal battle—it’s a fight for survival and dignity.
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