Principal Investigator: Avery LaChance, MD, MPH
Juvenile Dermatomyositis (JDM) is a rare disease of muscle inflammation with an annual incidence between 2-4 per million children. This study investigates how the crowdsourcing platform GoFundMe is utilized by families of children with JDM to offset the financial burden of this disease. Forty-eight campaigns for JDM were identified using the GoFundMe search-engine containing entries from 2013-2021. In total, 83.3%, 6.3% and 10.4% of campaigns were fundraising for JDM-related care expenses, research, and unrelated expenses (i.e. college-funds), respectively. Among campaigns for JDM-related care, the most cited expenses were treatment/medical bills (65.0%), travel for medical care (27.5%) and mobility/home renovations—i.e. ramp installation—(15.0%). While only 5.0% of patients were uninsured, 40.0% cited inadequate insurance coverage. Loss of income was also common in caregivers (42.5%), with 32.5% reporting significant reduction in work-hours. The median fundraising goal was $10,000 with a mean of 62.1% raised after one year. Travel to academic hospitals was a significant expense, suggesting that alternative care strategies like incorporating telehealth and home-treatments may reduce caregiver burden. In addition, many JDM medications are considered “off-label” which complicates insurance coverage. Overall, crowdsourcing appeared to be a partially effective method of fundraising in JDM although this study highlights significant out-of-pocket expense.
Juvenile Dermatomyositis (JDM) is a rare idiopathic inflammatory myopathy with an annual incidence between 2-4 per million children. This study investigates how the crowdsourcing platform GoFundMe is utilized by families of children with JDM to offset the financial burden of this disease. Forty-eight campaigns for JDM were identified using the GoFundMe search-engine containing entries from 2013-2021. In total, 83.3%, 6.3% and 10.4% of campaigns were fundraising for JDM-related care expenses, research, and unrelated expenses (i.e. college-funds), respectively. Among campaigns for JDM-related care, the most cited expenses were treatment/medical bills(65.0%), travel for medical care (27.5%) and mobility/home renovations—i.e. ramp installation—(15.0%). While only 5.0% of patients were uninsured, 40.0% cited inadequate insurance coverage. Loss of income was also common in caregivers (42.5%), with 32.5% reporting significant reduction in work-hours. The median fundraising goal was $10,000 with a mean of 62.1% raised after one year. Travel to academic hospitals was a significant expense, suggesting that alternative strategies for care like incorporating telehealth and home-treatments may reduce caregiver burden. In addition, many JDM medications are considered “off-label” which complicates insurance coverage. Overall, crowdsourcing appeared to be a partially effective method of fundraising in JDM although this study highlights significant out-of-pocket expense.
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