The Use of Crowdfunding to Support Radiation Therapy Cancer Treatments

Discussion

Success in crowdfunding for different forms of radiation therapy was mostly based on the number of social media interactions that a campaign was able to generate, with no significant differences in fundraising success existing between age, gender, insurance status, campaign length, or original goal amount. Other studies have similarly found no difference in donation totals between patient age, sex, and insurance status (9). While one might suspect that a lengthier campaign could generate greater funding due to a longer period of accepted donations, this was not found to be a significant factor in campaign fundraising goal realization. Few studies to date have assessed the impact of social media sharing with GoFundMe campaign success (11). Yet in a crowdfunding platform that is based on raising and spreading awareness for an individual cause, it stands to reason that the ability of a campaign to extend beyond immediate family and into multiple degrees of separation from a social circle would allow a campaign to generate more funding. Almost half of all campaign organizers were immediate family members (Table II), yet efficacious campaigns often had hundreds or thousands of donations. Indeed, improving fundraising outcomes for campaigns centered on enhanced sharing and spread of campaign information, particularly to members outside of immediate family.

The mean amount raised by all campaigns was less than 33% of the goal amount stated by campaign organizers, with previous studies showing even lower rates of success for cancer crowdfunding campaigns (9, 11). A majority of campaigns cited indirect costs related to treatment as opposed to the direct costs associated with cancer care, indicating that concerns such as travel costs, time away from work, and family support were of concern to patients and families organizing campaign posts. Campaigns rarely delved into extensive detail on the radiation therapy being requested, with approximately a quarter of campaigns listing thorough explanations of the treatment, and less than one in five campaigns providing a link for donators to learn more regarding the therapy being requested by organizers.

While radiation therapy accounts for a fraction of the cost of overall cancer care (6) and is a relatively cost-effective modality compared to pharmaceutical agents (12), notable variation in radiation costs can exist depending on patient geographic region and the type of radiation therapy being sought (8). Not all modalities of radiation therapy are equally cost-effective, with a 2012 study in the Journal of the National Cancer Institute finding that the median Medicare reimbursement for prostate cancer proton therapy treatment averaged $32,428, while the cost of intensity-modulated radiation therapy (IMRT) for comparable treatment amounted to $18,575 (13). Due to relatively high facility and equipment expenses, and lack of randomized phase three trials for clinical superiority over other radiation modalities in the treatment of many cancer types, proton therapy has come under scrutiny regarding cost-effectiveness (14). Several studies have further noted that insurance coverage for proton therapy represents a significant barrier to patient care, with only thirty percent of private insurers approving initial requests for treatment in some instances (15). Given the limited access to proton centers across the country, and the impact of insurance delays or denials of treatment, many patients and families have resorted to alternative means of funding their treatment expenses with crowdfunding platforms such as GoFundMe (9, 11, 16).

We observed the highest mean goal amount set by campaigns across all groups in the Proton therapy category ($40,724), yet campaigns raising money to fund proton therapy also raised the largest amount on average ($20,850) and had the largest percentage of successful campaigns (25.1%) compared to other therapy categories (Table III). Higher requested amounts may be due to a combination of factors, which include higher direct costs of care and difficulty with insurance coverage, and may also be compounded by increased indirect costs such as travel expenses due to the limited number of proton centers and regionality of treatment. We also observed that campaigns requesting donations for proton therapy cited travel expenses and time lost from work as additional cost burdens, more than any other treatment category (Table III). Previous studies have demonstrated that patients receiving proton therapy are more likely to travel over 200 miles compared to those seeking treatment with traditional photon-based approaches, lending support to the idea that this is truly an increased financial need and consideration in this cohort of patients (17). The proton radiotherapy treatment category demonstrated the youngest average age among groups in the study (14.6), consistent with increased proton treatment use among pediatric populations relative to the general population (18). Availability of these centers is increasing, but there is still substantially more limited access compared to access to photon treatment centers, which can further contribute to increased indirect costs of treatment such as travel and time lost from work (18).

Notably, indirect costs related to supporting family were most often cited by campaigns that sought treatment for SRT (6.5%, p<0.01), where the average patient age was more than double that of the proton therapy group (Table III). This indicates that in this population, patients may be more likely to be caregivers or financial providers for their household. With an increased understanding of these social factors, healthcare professionals may be able to better tailor therapy according to patient schedules in order to reduce the burden of these additional costs. Overall, indirect expenses related to travel for therapy (31.7%) as well as living expenses (29.2%) were cited most often across all four treatment categories (Table III).

Based on these results, we recommend that practices implement tools for financial toxicity screening for patients and families when planning for treatment and develop strategies that may assist families with these additional burdens to reduce the financial toxicity of cancer treatment. Such strategies have already been implemented by some practices across the country and include education regarding resources and foundations that assist with additional costs of treatment, vouchers for travel and gas expenses, and funds that address stay and boarding in a treatment location that is different from the home location of the patient (19-21). Even a brief discussion of costs between providers and patients may reduce expenses (22, 23). Increased transparency regarding direct costs of care and intentional discussions regarding differences in costs between radiation therapy modalities for a specific indication would also enhance patient education and understanding of financial obligations being undertaken. Our analysis of crowdfunding campaigns seeking assistance for cancer treatment reveals that the burdens of direct and indirect costs are substantial for families. A combined approach that explains direct costs of care with transparency, implements screening tools for financial toxicity, and provides substantive resources for mitigation of indirect costs of care is needed to address these issues.

Study limitations. Limitations to this study include that the designation of insurance status was determined by organizer self-reporting within the crowdfunding platform. There may be limited applicability of these results to patients requesting treatment funds for cancer care outside of the GoFundMe crowdfunding platform, as user demographics and campaign characteristics may differ across crowdfunding platforms.

Clinical implications. Future work in this area of research includes the exploration of strategies that may address patient concerns regarding direct and indirect costs of care. Clinical practices could use screening tools in their workflow and collaborate with social workers to identify areas of significant cost burden for patients and their families. Clinical practices can enhance transparency of costs associated with different radiation therapy modalities and can implement funding programs that are designed to address distinct costs associated with care such as travel expenses, boarding, and assistance with mitigation of time lost from work. Further work is needed on the effect of enhanced transparency in mitigating expenditures, the impact of financial toxicity risk screening tools for identifying indirect cost needs, and the efficacy of resources for addressing such needs.