When Insurance Falls Short: Crowdfunding Patterns for Endometriosis and Fertility Preservation in the U.S.

INTRODUCTION: Crowdfunding has emerged as a useful strategy to alleviate the burden of medical expenses, but most research has primarily addressed cancer. Endometriosis and infertility are common and impose significant financial burdens that may benefit from crowdfunding; however, data on the utility of crowdfunding for these conditions is limited. OBJECTIVE: To describe and compare crowdfunding patterns in the United States among patients with endometriosis and patients undergoing fertility preservation, and to study the role of U.S. states’ socioeconomic status on these patterns. METHODS: The crowdfunding platform GoFundMe was queried for the terms “endometriosis” OR “egg freeze.” All data obtained from these searches was collected using BrowseAI, an automated web scraping tool configured to extract structured information from all results returned by the original query. We then analyzed and compared campaign characteristics. We further studied the impact of state socioeconomic status on campaign success by using the following metrics by U.S. state: household income, gross domestic product, and Gini coefficient. RESULTS: Of 536 campaigns, 196 (36.6%) were for endometriosis and 340 (63.4%) were for fertility preservation. The mean total amount requested for endometriosis was lower when compared to fertility preservation ($13,122 vs $25,212, p<.001). The mean raised sum was lower for endometriosis when compared to fertility preservation ($1,930 vs $11,068, p<.001). Campaigns crowdfunding for fertility preservation were more successful, with 16.2% of campaigns meeting their stated goal, compared to 2.0% of campaigns for endometriosis (p<.001). Among campaigns for endometriosis, routine living expenses represented the most frequent reason for fundraising (64.3%). Most fertility preservation campaigns referred to a current or prior cancer diagnosis (75.9%). Fertility preservation campaigns that mentioned a cancer diagnosis requested significantly higher amounts (p=.002) and achieved greater fundraising success (p<.001) than those that did not. In multivariable logistic regression analysis, compared with endometriosis campaigns, fertility preservation campaigns were independently associated with raising above the median amount requested (aOR 4.63, 95% CI 2.75–7.78), raising above the cohort’s achieved median amount (aOR 2.66, 95% CI 1.64–4.32), and meeting the requested amount (aOR 6.16, 95% CI 2.05–18.55, Table 1). A higher median household income percentile was positively associated with crowdfunding for fertility treatments and negatively associated with crowdfunding for endometriosis (Figure 1). CONCLUSIONS: Crowdfunding appears to be an efficient but insufficient way to raise money for both endometriosis and fertility preservation, consistent with previous reports on crowdfunding for gynecologic cancer. Raising money for fertility preservation reached higher success rates compared to raising money for endometriosis. Fertility treatments are less likely to be covered by insurance compared to endometriosis treatments. Patients seeking funds for fertility preservation who have a current or prior cancer diagnosis may also require financial support for cancer-related expenses, adding to the financial burden. The relative success of fertility preservation campaigns may be explained by the frequent mention of cancer, which could evoke a stronger emotional response from potential donors, as well as by the greater public awareness of fertility preservation compared with endometriosis. Limitations include the use of a single crowdfunding platform and the inability to generalize results outside of the U.S.Figure 1Table 1