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FEBRUARY 2022 InTouch | 9 Genetic muscle disorders (including the muscular dystrophies, ion channel muscle disease and congenital myopathies) can have long term consequences for the individual and whānau/family. However, there have been few studies internationally that have tried to quantify the financial costs of these conditions for those affected. It is important to understand health care costs as this information can help with decision making in funding of services and treatments. A New Zealand study used information collected as part of the nationwide MD-Prev study conducted with people with genetic muscle disorders (GMD) and their whānau in 2016. Information on direct healthcare costs (e.g., medical equipment, hospitalisations, outpatient care, and paid formal home care support), direct non-healthcare costs (e.g., unpaid, informal care provided by a non-professional), and indirect costs (e.g., missed workdays or productivity loss) was collected. Based on this information, we were able to estimate costs of these services/resources using cost data from administrative databases (e.g. Pharmac). This enable us to calculate the average cost per person and costs to New Zealand per year. Our study estimated that the direct healthcare costs per year for all genetic muscle disorders was $38,441 per person, with indirect costs (for those people currently in paid employment) averaging around $4,320 per person per year. Taken together the total one-year cost per person was $38,657. Importantly the study highlighted a significant unmet need relating to unpaid care (i.e., care from a service needs and difficulties with accessing health care resources/ services for people with genetic muscle disorders in New Zealand. With our health and disability system undergoing a reform and the subsequent establishment of the Ministry of Disabled People and Accessibility Governance Board, RESEARCH Hannah Park from Auckland University on the long-term costs and consequences of muscle disorders. The financial cost of genetic muscle disorders The research was supervised by Professor Alice Theadom (above left) and Dr Braden Te Ao from Auckland University of Technology. The health economics analysis was conducted by Hannah Park from Auckland University as part of her Masters in Public Health. Genetic muscle disorders (including the muscular dystrophies, ion channel muscle disease and congenital myopathies) can have long term consequences for the individual and whānau/family. family member or friend that is not funded by the state), this was estimated to be $55,283 per person. At a national level, the total costs of GMD in NZ is $31.8 million. Unpaid care contributed the most to this national cost ($20 million), followed by paid formal care ($16.5 million) and then hospital admissions ($3.9 million). These findings illustrate that even with relatively high formal care utilisation, informal care is still a significant area of unmet need and suggests that people with GMDs struggle with accessing formal care support services. As would be expected, increased severity was associated with higher costs. In summary, our study illustrates and quantifies the unmet health we hope that these findings will bring awareness and help provide evidence-based recommendations to improve the health and wellbeing of people and their whānau living with these conditions.