Crowdsourcing as a Means of Fundraising for Juvenile Dermatomyositis

Principal Investigator: Avery LaChance, MD, MPH

Authors: Nathaniel Goldman, Bina Kassamali, Neda Shahriari, MD, Sarah Lonowski, MD, MBA, Ruth Ann Vleugels, MD, MPH, MBA, Avery LaChance, MD, MPH
Lay Abstract

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.

Scientific Abstract

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.

Clinical Implications
Many patients and caregivers of people with rare disease must cope with an added financial and psychological burden of illness. This study uses the crowdsourcing website GoFundMe to examine the extent of these “hidden costs.”

If the PDF viewer does not load initially, please try refreshing the page.

Comments are closed.