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The family of eight-week-old Toby Gavin is pleading with Ireland’s Health Service Executive (HSE) to urgently reconsider its refusal to fund life-saving medication that could keep their baby alive. Toby suffers from propionic acidemia—a rare and potentially fatal metabolic disorder affecting approximately one in every 150,000 births.
A Life-Changing Diagnosis
Following alarming signs shortly after birth, Toby was admitted to Temple Street Children’s Hospital and placed in intensive care, where clinicians identified dangerously elevated toxin levels in his body. Genetic testing confirmed the diagnosis of propionic acidemia, a condition where the body cannot process certain amino acids, leading to toxic accumulation and life-threatening complications.
Costly Medication, Uncertain Future
Toby’s treatment requires daily administration of CARBAGLU (carglumic acid), a specialised drug used to control ammonia levels. The medication, which costs €4,000 per month—totaling €48,000 annually—is not currently approved under Ireland’s Drug Payments Scheme, and the family’s reimbursement request was declined by the HSE’s Primary Care Reimbursement Service (PCRS).
While Toby receives the drug during hospital stays, his parents face an overwhelming financial burden if discharged without support. Lucy Gavin, his mother, expressed concern:
“We’re just surviving. We’re told the drug is too expensive, but six weeks of hospitalisation surely costs more. Why is this child’s life subject to cost-benefit analysis?”
An Unprecedented Appeal
The Gavins are now appealing to the HSE to provide discretionary funding, arguing that Toby’s case is exceptional. As the drug is rare and the condition extremely uncommon, traditional reimbursement pathways may not accommodate urgent, individual circumstances.
The family also faces future medical challenges, including a probable liver transplant in London and possible enrolment in a clinical trial in Manchester.
Public Support and Government Intervention Needed
A GoFundMe campaign has been launched to help cover medication costs. However, the family stresses that health decisions should not be reliant on public charity alone.
Ministerial intervention or compassionate exemption by the HSE could ensure Toby’s continuity of care outside hospital walls. The Gavins urge policymakers to consider the moral and economic dimensions of their case—and to act before it’s too late.
“Toby didn’t choose to be born with this condition,” said Ms Gavin. “We’re asking the HSE to show compassion and recognise that some cases defy convention—and deserve exceptional support.”
Pictured: Lucy Gavin with her family, Toby, Niall and Ivy.
