Economic Impact of AS: Results from Caregiver Survey
The results from a caregiver survey on the economic impact of Angelman syndrome (AS) were presented by Elizabeth Chertavian from Medicus Economics. The survey found that caregivers incur an average of over £85,000 in costs per year when caring for individuals with AS. This includes both monetary and non-monetary impacts, with work impairment due to caregiving being a significant cost factor. Caregivers also spend their own money on supportive therapies and devices. The survey results will be published in an academic journal and made available to manufacturers and the AS community to support access to therapies. The survey will continue to be available in the Global Angelman Syndrome Registry to gather more data and can be adapted for use in other countries. Further studies are being explored to quantify the full economic impact of AS and support insurance coverage for future therapies.
In this talk, Elizabeth Chertavian from Medicus Economics presents the results from a survey conducted to assess the economic impact of Angelman syndrome (AS) on caregivers. The survey was launched as a module inside the Global Angelman Registry, with a focus on the United States. Chertavian expresses gratitude to all the participants who filled out the survey and emphasizes the importance of quantifying the economic impact of disease, particularly from the perspective of caregivers.
Medicus Economics has been working closely with FAST (Foundation for Angelman Syndrome Therapeutics) to develop the economic evidence required for future access to Angelman syndrome therapies. Quantifying the economic impact of a disease is crucial when communicating with economic decision-makers, including policy makers and payers. While the economic impact is borne by various groups, including insurance payers, healthcare systems, and governments, it is also significant for patients and their caregivers. The caregiver impact survey aimed to quantify this specific aspect of the economic impact, which is often understudied but essential to understand.
The caregiver impact survey was launched as a module within the Global Angelman Registry. The survey was initially focused on the United States, with the intention of adapting and replicating it in other countries in the future. The survey received responses from 105 caregivers, providing valuable data and insights into the economic impact of caring for individuals with Angelman syndrome. Chertavian expresses gratitude to the registry team for their assistance in coding the survey and collating the data.
The survey findings revealed that caregivers incur an average of over £85,000 in costs per year when caring for individuals with Angelman syndrome. These costs include both monetary and non-monetary impacts, with accepted health economic methods used to assign a value to the non-monetary impacts. Work impairment due to caregiving was identified as a significant component of the overall cost, accounting for nearly half of the expenses. This includes caregivers who reduced their work hours or completely stepped back from work to provide care. The second largest category of costs reported by caregivers was the out-of-pocket expenses for supportive therapies, devices, and other necessities for their loved ones with Angelman syndrome.
Comparison and Implications
The survey findings were benchmarked against the costs associated with caregiving for other rare diseases. The results aligned with expectations, considering the wide range of impacts associated with Angelman syndrome, including cognitive, behavioral, and sleep-related challenges. Chertavian emphasizes that the survey findings represent an average and may not reflect the full range of experiences among caregivers. Nonetheless, quantifying this aspect of the economic impact is crucial in understanding the overall picture.
The results of the survey are being prepared for publication in an academic journal. The goal is to make this data available to manufacturers and the broader Angelman community, enabling them to communicate with economic decision-makers and advocate for access to approved therapies. The survey will continue to be available in the Global Angelman Syndrome Registry, allowing for further expansion of the results as more individuals participate. Additionally, there are ongoing efforts by FAST, Medicus, and others to explore additional studies that can provide a comprehensive understanding of the economic impact and support insurance coverage for future therapies.
In conclusion, the caregiver impact survey has provided valuable insights into the economic impact of Angelman syndrome on caregivers. The findings highlight the significant costs incurred by caregivers and the need to consider their perspectives when advocating for access to therapies. By quantifying this aspect of the economic impact, the Angelman community can build a compelling case for the importance of supporting caregivers and ensuring affordable access to necessary treatments.
- Title: Economic Impact of AS: Results from Caregiver Survey
- Author(s): Elizabeth Chertavian
- Author(s)’ affiliation: Medicus Economics, LLC
- Publication date: 2023-11-12
- Collection: 2023 FAST Science Summit