Analyzing Crowdfunding Reliance and Unmet Needs in Brain Cancer

Introduction: Patients with brain tumors and their families face dual challenges: managing a life-threatening illness and coping with financial burdens that frequently exceed insurance coverage. High costs of treatment are compounded by essential non-medical expenses. Crowdfunding platforms like GoFundMe have become an increasingly popular strategy to solicit public donations to cover expenses. The extent to which public fundraising campaigns address the broader socioeconomic needs of patients with brain tumors is unclear. This study was designed to understand the use of crowdfunding to address these needs.

Methods: Using web scraping, data were extracted from 5,373 publicly available GoFundMe campaigns, identified using search terms from the 2021 WHO classification of CNS tumors. Campaigns outside the United States, non-English campaigns, and those raising funds for organizations were excluded. Campaigns were analyzed with regard to demographic information, medical diagnosis, treatment, and types of medical and non-medical expenses described in funding campaign narratives.

Results: Of the 5,373 campaigns screened, gliomas (22%), meningiomas (8%), and medulloblastomas (5%) were the most common primary CNS tumors mentioned. The most common medical expenses cited were surgery (69%), radiation (43%), chemotherapy (38%), and experimental treatments (7%). Non-medical expenses included transportation (54%), housing (46%), household costs (40%), disability support (67%) and income loss (12%). End-of-life expenses, including palliative and funeral costs were reported in 12% of campaigns. The average length of campaigns was 44 months. The average amount raised by a campaign was $22,58 and average campaign goal was $44,247.

Conclusion : These findings highlight the socioeconomic burdens borne by patients with brain tumors beyond direct medical expenses. The use of crowdfunding for basic supports underscores gaps in healthcare and social safety nets. The next step in this line of inquiry is a survey for GoFundMe campaign creators to learn more about patient demographics and the economic impact of their illness.