Australian Study Examines High Cost of Raising a Child with Chromsome 15 Disoders

September 2, 2021

Australian Study Examines High Cost of Angelman Related Conditions

by Marisa Wexler, MS | 

The total cost of raising a child with Angelman syndrome (AS) is almost $100,000 AUD — more than $70,000 USD — per year, according to an Australian study.

The data suggest that, in Angelman and other conditions that cause intellectual abnormalities, less-severe cognitive impairment is associated with less costs. This suggests that early diagnosis (and, consequently, early interventions to improve cognition) may be cost-saving, according to researchers.

The study, “The Cost of Raising Individuals with Fragile X or Chromosome 15 Imprinting Disorders in Australia,” was published in the Journal of Autism and Developmental Disorders.

Raising a child is expensive at the best of times, and having a child with a rare disease can mean having to pay for extra medical costs in addition to non-medical costs. Understanding these costs at the societal level can help to identify areas of unmet need, and suggest strategies for lowering the burden caused by rare diseases.

A team of researchers in Australia surveyed caregivers of 108 individuals (ages 8 months to 45 years) affected by a rare disease that causes cognitive impairment. Specifically, there were 27 individuals with Angelman syndrome, 35 with fragile X syndrome (FXS), 32 with Prader-Willi syndrome (PWS), and 14 with chromosome 15q duplication (Dup15q).

Using the collected data, the researchers estimated the average yearly societal cost of each condition — that is, the cost incurred to all parts of society, including the affected fa