Crowdfunding to Compensate for Financial Burdens of Patients with Systemic Sclerosis

Crowdfunding to Compensate for Financial Burdens of Patients with Systemic Sclerosis | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Crowdfunding to Compensate for Financial Burdens of Patients with Systemic Sclerosis Theodore Okoli, Bina Kassamali, Subin Lim, Raza H. Mir, Katherine Young, and 5 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4000921/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 4 You are reading this latest preprint version Abstract Systemic sclerosis (SSc) is a rare autoimmune disease associated with significant morbidity and mortality, as well as high financial burdens. This study examined the use of the crowdfunding platform GoFundMe as a means to support SSc-related medical care. We found that a subset of patients with systemic sclerosis turn to the crowdfunding platform GoFundMe in an attempt to cover out of pocket expenses related to their disease. However, these campaigns are met with limited success. Altogether, our study demonstrates the significant medical and financial burden faced by individuals with SSc. Crowdfunding GoFundMe Systemic Sclerosis Health Equity Figures Figure 1 Introduction Systemic sclerosis (SSc) is a rare autoimmune disease that significantly impairs quality of life and has the highest mortality rate among rheumatologic conditions [ 1 ]. SSc is also associated with high financial burdens, as many treatments are not covered by health insurance due to a lack of FDA approved therapies for this disease state [ 1 – 5 ]. Previous studies have explored the use of crowdfunding as a means to financially support patients with dermatologic diseases such as juvenile dermatomyositis, epidermolysis bullosa, and alopecia, but no studies to date have investigated the use of crowdfunding for SSc [ 6 – 8 ]. In this study, we examined the use of the popular crowdfunding platform GoFundMe as a means to support SSc-related medical care. Methods On May 23, 2021, GoFundMe’s publically available internal search engine was used to identify campaigns soliciting donations for SSc. Data were retrieved from GoFundMe via a Python script designed to target all campaigns containing the words “systemic sclerosis” and “scleroderma.” Duplicate campaigns or campaigns unrelated to SSc were excluded. Campaign websites were reviewed to collect data on donation recipients, impact of SSc on quality of life, sources of financial burden, fundraising goals and outcomes, and allocation of donations. Stata SE 16.1 was utilized for data analysis. Results Among 1,672 campaigns evaluated, 652 met inclusion criteria (Table 1 ). Of these campaigns, 78.2% (n = 510) were created on behalf of someone with SSc and 31.1% (n = 203) were created by someone with SSc. 71.8% (n = 468) and 38.8% (n = 253) of campaigns reported functional impairment and psychological distress associated with having SSc, respectively. 82.7% (n = 539) of campaigns stated that the fundraising recipient had financial burdens related to SSc, including loss or expected loss of income (n = 218, 33.4%), incomplete insurance coverage (n = 166, 25.4%), lack of coverage for procedures (n = 54, 8.3%), lack of coverage for medications (n = 30, 4.6%), and lack of health insurance (n = 13, 2%). Table 1 Characteristics of SSc crowdfunding campaigns Characteristic N (%) N = 652 Funding recipient Self (person with SSc) Another person with SSc SSc-related charitable organization 203 (31.1) 510 (78.2) 48 (7.4) Impact of SSc described in campaign Financial burden Functional impairment Psychosocial distress Unspecified impact on quality of life 539 (82.7) 468 (71.8) 253 (38.8) 102 (15.7) Sources of financial burden Loss or expected loss of income Lack of health insurance Incomplete insurance coverage Lack of insurance coverage for medications Lack of insurance coverage for procedures 218 (33.4) 13 (2) 166 (25.4) 30 (4.6) 54 (8.3) Fundraising goal (average, [range]) Amount raised (average, [range]) Campaigns meeting fundraising goal $ 21,627.83 [ $ 100 - $ 300,000] $ 5,409.66 [ $ 0 - $ 44,780] 96 (14.8) Abbreviation: SSc, systemic sclerosis 14.8% (n = 96) of campaigns met their fundraising goal. The average fundraising goal was $ 21,627.83 (range $ 100 - $ 300,000); the average amount raised was $ 5,409.66 (range $ 0 - $ 44,780). 29.6% (n = 193) of campaigns allocated donations to pay for procedures, 26.1% (n = 170) for hospitalizations, 24.4% (n = 159) for travel for medical care, and 22.1% (n = 144) for medications (Fig. 1 ). 88.8% (n = 579) of campaigns stated that the donations would make life less burdensome or stressful for the recipient. Discussion This study highlights both the financial hardships experienced by individuals with SSc, as well as the limited effectiveness of crowdfunding in providing substantial support. The majority of campaigns described quality-of-life-impairing financial strain, most commonly from a loss or expected loss of income. This likely reflects the campaigns’ frequent reporting of SSc-associated functional impairment, a known risk factor for work disability among individuals with SSc [ 9 ]. Inadequate insurance coverage was the second biggest source of financial burden, with the top four areas of need relating to hospitalizations, travel for medical care, medications, and procedures. This result is in line with other dermatology crowdfunding studies that report incomplete insurance coverage for juvenile dermatomyositis, epidermolysis bullosa, and alopecia [ 6 – 8 ]. Given that most campaigns were created on behalf of individuals with SSc, our study also suggests that the financial burdens of SSc extend beyond patients themselves and are shared by their loved ones. Unfortunately, despite the widespread financial need and dedicated efforts observed in our study, most campaigns were unsuccessful at meeting their fundraising goals. This finding is consistent with prior studies in which crowdfunding campaigns for other dermatologic diseases fell short of their targets [ 6 – 8 ]. Well-intentioned as crowdfunding may be, this study and others suggest it may not be a reliable source of healthcare financing. Addressing root causes of these high out of pocket expenses for patients, including a dearth of FDA-approved treatments, is much more imperative. Potential limitations of this study include the inability to evaluate specific factors that contribute to crowdfunding success, such as social network size. Conclusion Our study highlights the financial challenges confronting individuals with SSc, from disease-related loss of income to underinsurance. Moving forward, insurers and the government should make their policies and practices more equitable to mitigate these burdens. Declarations Funding Sources: None Conflicts of Interest: None declared. IRB Approval Status: No IRB required Author Contribution B.K. and T.O. helped organize, write, and edit the main manuscript. T.O. also assisted in data collection. B.K. also assisted in data analysis. S.L. assisted in data collection and with edits to the main manuscript. R.M. assisted in coding the Python script. Ka.Y. helped with data collection and preparation of Figure 1. S.H. helped with data collection. Ke.Y. assisted with the planning of the data columns and points. J.M. helped with data analysis. A.L. and D.M. oversaw data collection, data analysis, and preparation of the main manuscript. A.L. and D.M. also helped with editing. References Min MS, Kassamali B, Mazori DR, Vleugels RA, Merola JF, Cobos G (2021) The catch-22 of Limited Food and Drug Administration approval for connective tissue disease therapies. J Am Acad Dermatol 85(2):517–519. 10.1016/j.jaad.2021.03.103 Morrisroe K, Stevens W, Sahhar J, Ngian G-S, Ferdowsi N, Hansen D (2019) The clinical and economic burden of systemic sclerosis related interstitial lung disease. Rheumatology 59(8):1878–1888. 10.1093/rheumatology/kez532 Fischer A, Zimovetz E, Ling C, Esser D, Schoof N (2017) Humanistic and cost burden of systemic sclerosis: A review of the literature. Autoimmun rev 16(11):1147–1154. 10.1016/j.autrev.2017.09.010 Zhou Z, Fan Y, Tang W, Liu X, Thomason D, Zhou Z-Y (2019) Economic burden among commercially insured patients with systemic sclerosis in the United States. J Rhuematol 46(8):920–927. 10.3899/jrheum.180445 Denton CP, Khanna D (2017) Systemic sclerosis. Lancet 390(10103):1685–1699. 10.1016/s0140-6736(17)30933-9 Goldman N, Kassamali B, Shahriari N, Lonowski S, Nwankwo C, Tran A (2022) Crowdsourcing as a means of fundraising for juvenile dermatomyositis. Pediatr Dermatol 39(3):379–381. 10.1111/pde.14943 Lim S, Encarnacion I, O’Connell KA, Smith RJ (2023) Crowdfunding to alleviate financial burdens among patients with epidermolysis bullosa. Arch Dermatol Res 316(1). 10.1007/s00403-023-02781-5 Desai S, Manjaly P, Lee KJ, Li SJ, Manjaly C, Huang KP, Mostaghimi A (2022) Useofcrowdfundingforexpensesrelatedtomedicalhairloss.JAmAcadDermatol.;86(5):1109–1110.doi:10.1016/j.jaad.2020.09.008.Epub2020Sep11.PMID:32926974 Lee JJY, Gignac MAM, Johnson SR (2021Sept) Employment outcomes in systemic sclerosis. Best Pract Res Clin Rheumatol 35(3):101667. 10.1016/j.berh.2021.101667 Additional Declarations No competing interests reported. Cite Share Download PDF Status: Under Review Version 1 posted Editorial decision: Revision requested 14 Apr, 2024 Editor assigned by journal 01 Mar, 2024 Submission checks completed at journal 01 Mar, 2024 First submitted to journal 29 Feb, 2024 You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-4000921","acceptedTermsAndConditions":true,"allowDirectSubmit":false,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":275812155,"identity":"87934759-ec7a-4fbf-a3e6-c2badf3b8cce","order_by":0,"name":"Theodore Okoli","email":"","orcid":"","institution":"Rosalind Franklin University of Medicine and Science","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Theodore","middleName":"","lastName":"Okoli","suffix":""},{"id":275812156,"identity":"1d271788-d501-4128-8047-4f469b4f4c41","order_by":1,"name":"Bina Kassamali","email":"","orcid":"","institution":"Harvard Medical School","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Bina","middleName":"","lastName":"Kassamali","suffix":""},{"id":275812157,"identity":"c60336c9-6190-4342-9930-6c5d98de9dd8","order_by":2,"name":"Subin Lim","email":"","orcid":"","institution":"Eastern Virginia Medical School","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Subin","middleName":"","lastName":"Lim","suffix":""},{"id":275812158,"identity":"b8b1ef81-4c15-41a3-a924-76e953efbb76","order_by":3,"name":"Raza H. Mir","email":"","orcid":"","institution":"Brigham and Women’s Hospital","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Raza","middleName":"H.","lastName":"Mir","suffix":""},{"id":275812159,"identity":"1f10f0da-777d-4ba1-8e13-1c7837506d2f","order_by":4,"name":"Katherine Young","email":"","orcid":"","institution":"Harvard Medical School","correspondingAuthor":false,"submittingAuthor":false,"prefix":"","firstName":"Katherine","middleName":"","lastName":"Young","suffix":""},{"id":275812160,"identity":"4cd0f027-4011-4174-ad75-af67e3c5949c","order_by":5,"name":"Sarah B. 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LaChance","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAABBklEQVRIie3PsWrCQBzH8X84MMtfskaC5hUSDuJi9VWUQLqICC4ODoKgizhfaB5C6QsE/qBLurfo0iWThULARWiNShftQXXqcN/px8GHuwNQqf5jOgA7j+lxxOdTBNCGMsJ+CCY3E7P9R2KM2HvWHWxso/SxtLqwsavCTz+3UCvP49+JSQVuiWXqhk+dwBKQutFrwMMIAi4jQOAxLFDTWbe9NQJpAmPO8tGSEZv0HcMvajbekhNpCFxlOfmWEofQY8VxfouJJ9IS+vR4SywlLmHPKs7IFUnncY8O+TnpaZHj81BCKqvJIsMd2cbkhTj26UEw/Rm2/Xp5Jvv+xTuvhkqlUqnu6QBRe1pYo8+egwAAAABJRU5ErkJggg==","orcid":"","institution":"Brigham and Women’s Hospital","correspondingAuthor":true,"submittingAuthor":false,"prefix":"","firstName":"Avery","middleName":"H.","lastName":"LaChance","suffix":""}],"badges":[],"createdAt":"2024-02-29 19:15:18","currentVersionCode":1,"declarations":"","doi":"10.21203/rs.3.rs-4000921/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-4000921/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":52033669,"identity":"d55255c7-e6d1-4987-b836-d3d7c120ef1c","added_by":"auto","created_at":"2024-03-05 16:42:17","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":20693,"visible":true,"origin":"","legend":"\u003cp\u003eCategories to which SSc crowdfunding campaigns allocated their donations\u003c/p\u003e\n\u003cp\u003eAbbreviation: SSc, systemic sclerosis\u003c/p\u003e","description":"","filename":"floatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-4000921/v1/d5140a4955265cc9c2ad9011.png"},{"id":52033718,"identity":"68c27921-6b1e-45a0-ab13-68e22c0008ae","added_by":"auto","created_at":"2024-03-05 16:42:26","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":206253,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4000921/v1/14fb9aa0-0f9c-4989-82cb-5a1b5f6be87a.pdf"}],"financialInterests":"No competing interests reported.","formattedTitle":"Crowdfunding to Compensate for Financial Burdens of Patients with Systemic Sclerosis","fulltext":[{"header":"Introduction","content":"\u003cp\u003eSystemic sclerosis (SSc) is a rare autoimmune disease that significantly impairs quality of life and has the highest mortality rate among rheumatologic conditions [\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e]. SSc is also associated with high financial burdens, as many treatments are not covered by health insurance due to a lack of FDA approved therapies for this disease state [\u003cspan additionalcitationids=\"CR2 CR3 CR4\" citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e]. Previous studies have explored the use of crowdfunding as a means to financially support patients with dermatologic diseases such as juvenile dermatomyositis, epidermolysis bullosa, and alopecia, but no studies to date have investigated the use of crowdfunding for SSc [\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. In this study, we examined the use of the popular crowdfunding platform GoFundMe as a means to support SSc-related medical care.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eOn May 23, 2021, GoFundMe\u0026rsquo;s publically available internal search engine was used to identify campaigns soliciting donations for SSc. Data were retrieved from GoFundMe via a Python script designed to target all campaigns containing the words \u0026ldquo;systemic sclerosis\u0026rdquo; and \u0026ldquo;scleroderma.\u0026rdquo; Duplicate campaigns or campaigns unrelated to SSc were excluded. Campaign websites were reviewed to collect data on donation recipients, impact of SSc on quality of life, sources of financial burden, fundraising goals and outcomes, and allocation of donations. Stata SE 16.1 was utilized for data analysis.\u003c/p\u003e"},{"header":"Results","content":"\u003cp\u003eAmong 1,672 campaigns evaluated, 652 met inclusion criteria (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Of these campaigns, 78.2% (n\u0026thinsp;=\u0026thinsp;510) were created on behalf of someone with SSc and 31.1% (n\u0026thinsp;=\u0026thinsp;203) were created by someone with SSc. 71.8% (n\u0026thinsp;=\u0026thinsp;468) and 38.8% (n\u0026thinsp;=\u0026thinsp;253) of campaigns reported functional impairment and psychological distress associated with having SSc, respectively. 82.7% (n\u0026thinsp;=\u0026thinsp;539) of campaigns stated that the fundraising recipient had financial burdens related to SSc, including loss or expected loss of income (n\u0026thinsp;=\u0026thinsp;218, 33.4%), incomplete insurance coverage (n\u0026thinsp;=\u0026thinsp;166, 25.4%), lack of coverage for procedures (n\u0026thinsp;=\u0026thinsp;54, 8.3%), lack of coverage for medications (n\u0026thinsp;=\u0026thinsp;30, 4.6%), and lack of health insurance (n\u0026thinsp;=\u0026thinsp;13, 2%).\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eCharacteristics of SSc crowdfunding campaigns\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCharacteristic\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eN (%)\u003c/p\u003e \u003cp\u003eN\u0026thinsp;=\u0026thinsp;652\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFunding recipient\u003c/p\u003e \u003cp\u003eSelf (person with SSc)\u003c/p\u003e \u003cp\u003eAnother person with SSc\u003c/p\u003e \u003cp\u003eSSc-related charitable organization\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e203 (31.1)\u003c/p\u003e \u003cp\u003e510 (78.2)\u003c/p\u003e \u003cp\u003e48 (7.4)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eImpact of SSc described in campaign\u003c/p\u003e \u003cp\u003eFinancial burden\u003c/p\u003e \u003cp\u003eFunctional impairment\u003c/p\u003e \u003cp\u003ePsychosocial distress\u003c/p\u003e \u003cp\u003eUnspecified impact on quality of life\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e539 (82.7)\u003c/p\u003e \u003cp\u003e468 (71.8)\u003c/p\u003e \u003cp\u003e253 (38.8)\u003c/p\u003e \u003cp\u003e102 (15.7)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSources of financial burden\u003c/p\u003e \u003cp\u003eLoss or expected loss of income\u003c/p\u003e \u003cp\u003eLack of health insurance\u003c/p\u003e \u003cp\u003eIncomplete insurance coverage\u003c/p\u003e \u003cp\u003eLack of insurance coverage for medications\u003c/p\u003e \u003cp\u003eLack of insurance coverage for procedures\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e218 (33.4)\u003c/p\u003e \u003cp\u003e13 (2)\u003c/p\u003e \u003cp\u003e166 (25.4)\u003c/p\u003e \u003cp\u003e30 (4.6)\u003c/p\u003e \u003cp\u003e54 (8.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFundraising goal (average, [range])\u003c/p\u003e \u003cp\u003eAmount raised (average, [range])\u003c/p\u003e \u003cp\u003eCampaigns meeting fundraising goal\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e21,627.83 [\u003cspan\u003e$\u003c/span\u003e100 - \u003cspan\u003e$\u003c/span\u003e300,000]\u003c/p\u003e \u003cp\u003e\u003cspan\u003e$\u003c/span\u003e5,409.66 [\u003cspan\u003e$\u003c/span\u003e0 - \u003cspan\u003e$\u003c/span\u003e44,780]\u003c/p\u003e \u003cp\u003e96 (14.8)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003ctfoot\u003e \u003ctr\u003e\u003ctd colspan=\"2\"\u003eAbbreviation: SSc, systemic sclerosis\u003c/td\u003e\u003c/tr\u003e\u003c/tfoot\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e14.8% (n\u0026thinsp;=\u0026thinsp;96) of campaigns met their fundraising goal. The average fundraising goal was \u003cspan\u003e$\u003c/span\u003e21,627.83 (range \u003cspan\u003e$\u003c/span\u003e100 - \u003cspan\u003e$\u003c/span\u003e300,000); the average amount raised was \u003cspan\u003e$\u003c/span\u003e5,409.66 (range \u003cspan\u003e$\u003c/span\u003e0 - \u003cspan\u003e$\u003c/span\u003e44,780). 29.6% (n\u0026thinsp;=\u0026thinsp;193) of campaigns allocated donations to pay for procedures, 26.1% (n\u0026thinsp;=\u0026thinsp;170) for hospitalizations, 24.4% (n\u0026thinsp;=\u0026thinsp;159) for travel for medical care, and 22.1% (n\u0026thinsp;=\u0026thinsp;144) for medications (Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). 88.8% (n\u0026thinsp;=\u0026thinsp;579) of campaigns stated that the donations would make life less burdensome or stressful for the recipient.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e"},{"header":"Discussion","content":"\u003cp\u003eThis study highlights both the financial hardships experienced by individuals with SSc, as well as the limited effectiveness of crowdfunding in providing substantial support. The majority of campaigns described quality-of-life-impairing financial strain, most commonly from a loss or expected loss of income. This likely reflects the campaigns\u0026rsquo; frequent reporting of SSc-associated functional impairment, a known risk factor for work disability among individuals with SSc [\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e]. Inadequate insurance coverage was the second biggest source of financial burden, with the top four areas of need relating to hospitalizations, travel for medical care, medications, and procedures. This result is in line with other dermatology crowdfunding studies that report incomplete insurance coverage for juvenile dermatomyositis, epidermolysis bullosa, and alopecia [\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Given that most campaigns were created on behalf of individuals with SSc, our study also suggests that the financial burdens of SSc extend beyond patients themselves and are shared by their loved ones.\u003c/p\u003e \u003cp\u003eUnfortunately, despite the widespread financial need and dedicated efforts observed in our study, most campaigns were unsuccessful at meeting their fundraising goals. This finding is consistent with prior studies in which crowdfunding campaigns for other dermatologic diseases fell short of their targets [\u003cspan additionalcitationids=\"CR7\" citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e]. Well-intentioned as crowdfunding may be, this study and others suggest it may not be a reliable source of healthcare financing. Addressing root causes of these high out of pocket expenses for patients, including a dearth of FDA-approved treatments, is much more imperative.\u003c/p\u003e \u003cp\u003ePotential limitations of this study include the inability to evaluate specific factors that contribute to crowdfunding success, such as social network size.\u003c/p\u003e"},{"header":"Conclusion","content":"\u003cp\u003eOur study highlights the financial challenges confronting individuals with SSc, from disease-related loss of income to underinsurance. Moving forward, insurers and the government should make their policies and practices more equitable to mitigate these burdens.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eFunding Sources:\u003c/strong\u003e None\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflicts of Interest:\u003c/strong\u003e None declared.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eIRB Approval Status:\u003c/strong\u003e No IRB required\u003c/p\u003e\u003ch2\u003eAuthor Contribution\u003c/h2\u003e\u003cp\u003eB.K. and T.O. helped organize, write, and edit the main manuscript. T.O. also assisted in data collection. B.K. also assisted in data analysis. S.L. assisted in data collection and with edits to the main manuscript. R.M. assisted in coding the Python script. Ka.Y. helped with data collection and preparation of Figure 1. S.H. helped with data collection. Ke.Y. assisted with the planning of the data columns and points. J.M. helped with data analysis. A.L. and D.M. oversaw data collection, data analysis, and preparation of the main manuscript. A.L. and D.M. also helped with editing.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eMin MS, Kassamali B, Mazori DR, Vleugels RA, Merola JF, Cobos G (2021) The catch-22 of Limited Food and Drug Administration approval for connective tissue disease therapies. J Am Acad Dermatol 85(2):517\u0026ndash;519. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.jaad.2021.03.103\u003c/span\u003e\u003cspan address=\"10.1016/j.jaad.2021.03.103\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eMorrisroe K, Stevens W, Sahhar J, Ngian G-S, Ferdowsi N, Hansen D (2019) The clinical and economic burden of systemic sclerosis related interstitial lung disease. 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Best Pract Res Clin Rheumatol 35(3):101667. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003e10.1016/j.berh.2021.101667\u003c/span\u003e\u003cspan address=\"10.1016/j.berh.2021.101667\" targettype=\"DOI\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":false,"hideJournal":false,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"archives-of-dermatological-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"","sideBox":"Learn more about [Archives of Dermatological Research](https://www.springer.com/journal/403)","snPcode":"403","submissionUrl":"https://submission.nature.com/new-submission/403/3","title":"Archives of Dermatological Research","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false},"keywords":"Crowdfunding, GoFundMe, Systemic Sclerosis, Health Equity","lastPublishedDoi":"10.21203/rs.3.rs-4000921/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4000921/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eSystemic sclerosis (SSc) is a rare autoimmune disease associated with significant morbidity and mortality, as well as high financial burdens. This study examined the use of the crowdfunding platform GoFundMe as a means to support SSc-related medical care. We found that a subset of patients with systemic sclerosis turn to the crowdfunding platform GoFundMe in an attempt to cover out of pocket expenses related to their disease. However, these campaigns are met with limited success. Altogether, our study demonstrates the significant medical and financial burden faced by individuals with SSc.\u003c/p\u003e","manuscriptTitle":"Crowdfunding to Compensate for Financial Burdens of Patients with Systemic Sclerosis","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-03-05 16:42:07","doi":"10.21203/rs.3.rs-4000921/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-04-14T08:02:20+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-03-01T13:28:55+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-03-01T13:28:54+00:00","index":"","fulltext":""},{"type":"submitted","content":"Archives of Dermatological Research","date":"2024-02-29T19:03:09+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"archives-of-dermatological-research","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"","sideBox":"Learn more about [Archives of Dermatological Research](https://www.springer.com/journal/403)","snPcode":"403","submissionUrl":"https://submission.nature.com/new-submission/403/3","title":"Archives of Dermatological Research","twitterHandle":"","acdcEnabled":true,"dfaEnabled":true,"editorialSystem":"stoa","reportingPortfolio":"Springer Hybrid","inReviewEnabled":true,"inReviewRevisionsEnabled":false}}],"origin":"","ownerIdentity":"56a1dbf9-fdbf-4d90-bcc5-d33fff571d4e","owner":[],"postedDate":"March 5th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2024-04-20T06:08:46+00:00","versionOfRecord":[],"versionCreatedAt":"2024-03-05 16:42:07","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4000921","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4000921","identity":"rs-4000921","version":["v1"]},"buildId":"WrCJVZZCHTDjtuVLN7oU0","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}