Unmet financial needs among patients crowdfunding to support gynecologic cancer care.

BACKGROUND: Patients may use crowdfunding to solicit donations, typically from multiple small donors using internet-based means, to offset the financial toxicity of cancer care. OBJECTIVE: To describe crowdfunding campaigns by gynecologic cancer patients and to compare campaign characteristics and needs expressed between patients with cervical, uterine, and ovarian cancer. STUDY DESIGN: We queried the public crowdfunding forum GoFundMe.com for "cervical cancer," "uterine cancer," and "ovarian cancer." The first 200 consecutive posts for each cancer type fundraising within the United States were analyzed. Data on campaign goals and needs expressed were manually extracted. Descriptive statistics and bivariate analyses were performed. RESULTS: Among the 600 fundraising pages, the median campaign goal was $10,000 [IQR $5000-$23,000]. Campaigns raised a median of 28.6% of their goal with only 8.7% of campaigns reaching their goal after a median of 54 days online. On average, ovarian cancer campaigns had higher monetary goals, more donors, and larger donation amounts than cervical cancer campaigns and raised more money than both cervical and uterine cancer campaigns. Campaigns were fundraising to support medical costs (80-85%) followed by lost wages (36-56%) or living expenses (27-41%). Cervical cancer campaigns reported need for non-medical costs more frequently than uterine or ovarian cancer campaigns. States without Medicaid expansions (31% of the national population) were over-represented among cervical cancer and uterine cancer, but not ovarian cancer campaigns. CONCLUSIONS: Crowdfunding pages reveal patients fundraising for out-of-pocket costs in the thousands of dollars and a wide range of unmet financial needs based on cancer type.

Characterizing online crowdfunding campaigns for patients with kidney cancer.

BACKGROUND: Cancer patients incur high care costs; however, there is a paucity of literature characterizing unmet financial obligations for patients with urologic cancers. Kidney cancer patients are particularly burdened by costs associated with novel systemic treatments. This study aimed to ascertain the characteristics of GoFundMe® crowdfunding campaigns for patients with kidney cancer, in order to better understand the financial needs of this population. METHODS: We performed a cross-sectional, quantitative, and qualitative analysis of all kidney cancer GoFundMe® campaigns since 2010. Fundraising metrics such as goal funds and amount raised, were extracted. Eight independent investigators collected patient, disease and campaign-level variables from campaign stories (κ = 0.72). In addition, we performed a content analysis of campaign narratives spotlighting the primary appeal of the patient's life story. RESULTS: A total of 486 GoFundMe® kidney cancer campaigns were reviewed. The median goal funds were 10,000USD [IQR = 5000, 20,000] and the median amount raised was 1450USD [IQR = 578, 4050]. Most campaigns were for adult males (53%) and 62% of adults had children. A minority were for pediatric patients (17%). Thirty-seven percent of adult patients were primary wage earners and 43% reported losing their job or substantially reducing hours due to illness. Twenty-nine percent reported no insurance or insufficient coverage. Campaigns most frequently sought funds for medical bills (60%), nonmedical bills (27%), and medical travel (23%). Qualitative campaign narratives mostly emphasized patients' hardship (46.3%) or high moral character (35.2%). Only 8% of campaigns achieved their target funds. CONCLUSIONS: Despite fundraising efforts, patients with kidney cancer face persistent financial barriers, incurring both medical and nonmedical cost burdens. This may be compounded by limited or no insurance. Cancer care providers should be aware of financial constraints placed on kidney cancer patients, and consider how these may impact treatment regimens.

Crowdfunding for complementary and alternative medicine: What are cancer patients seeking?

BACKGROUND: Complementary and alternative medicine (CAM) is increasingly being integrated into conventional medical care for cancer, used to counter the side effects of conventional cancer treatment, and offered as an alternative to conventional cancer care. Our aim is to gain a broader understanding of trends in CAM interventions for cancer and crowdfunding campaigns for these interventions. METHODS: GoFundMe campaigns fundraising for CAM were retrieved through a database of crowdfunding campaign data. Search terms were drawn from two National Institutes of Health lists of CAM cancer interventions and a previous study. Campaigns were excluded that did not match these or related search terms or were initiated outside of June 4th, 2018 to June 4th, 2019. RESULTS: 1,396 campaigns were identified from the US (n = 1,037, 73.9%), Canada (n = 165, 11.8%), and the UK (n = 107, 7.7%). Most common cancer types were breast (n = 344, 24.6%), colorectal (n = 131, 9.4%), and brain (n = 98, 7.0%). CAM interventions sought included supplements (n = 422, 30.2%), better nutrition (n = 293, 21.0%), high dose vitamin C (n = 276, 19.8%), naturopathy (n = 226, 16.2%), and cannabis products (n = 211, 15.1%). Mexico (n = 198, 41.9%), and the US (n = 169, 35.7%) were the most common treatment destinations. CONCLUSIONS: These findings confirm active and ongoing interest in using crowdfunding platforms to finance CAM cancer interventions. They confirm previous findings that CAM users with cancer tend to have late stage cancers, cancers with high mortality rates, and specific diseases such as breast cancer. These findings can inform targeted responses where facilities engage in misleading marketing practices and the efficacy of interventions is unproven.

Global public and philanthropic investment in childhood cancer research: systematic analysis of research funding, 2008-16.

Childhood cancers caused an estimated 75 000 deaths in children aged 0-14 years in 2018, of which 90% were in low-income and middle-income countries, and yet this group is missing from global health agendas. We examined global patterns in public and philanthropic funding for childhood cancer research-a proxy for global research activity-to address the critical gaps in knowledge. We used data from the Dimensions database to systematically search for and analyse 3414 grants from 115 funders across 35 countries between 2008 and 2016, organised by funding source, recipient, tumour type, research focus, and pipeline categories, to investigate trends over time. During this period, global funding for childhood cancer research was US$2 billion, of which $772 million (37·9%) was for general childhood cancer, $449 million (22·0%) was for leukaemias, and $330 million (16·2%) was for CNS tumours. $1·6 billion (77·7%) of funding was awarded from, and to, institutions based in the USA. Preclinical research received $1·2 billion (59·3%), and around $525 million (25·7%) included support for clinical trials, but only $113 million (5·5%) supported health-care delivery research. Overall, funding was inadequate and geographically inequitable, and new commitments to funding have declined since 2011.

Downstream Effect of a Proton Treatment Center on an Academic Medical Center.

PURPOSE: To quantify the effects of opening a proton center (PC) on an academic medical center (AMC)/radiation oncology department. METHODS AND MATERIALS: Radiation treatment volume and relative value units from fiscal year 2015 (FY15) to FY17 were retrospectively analyzed at the AMC and 2 community-based centers. To quantify new patient referrals to the AMC, we reviewed the electronic medical record for all patients seen at the PC since consults were initiated in November 2015 (n = 1173). Patients were excluded if the date of entry into the AMC electronic medical record predated their PC consultation. Hospital resource use and professional and technical charges were obtained for these patients. Academic growth, philanthropy, and resident education were evaluated based on grant submissions, clinical trial enrollment, philanthropy, and pediatric case exposure, respectively, from PC opening through FY17. RESULTS: From FY15 to FY17, radiation fractions at the AMC and the 2 community sites decreased by 14% (95% confidence interval [CI], 12%-16%, P < .001) and increased by 19% (95% CI, 16%-23%, P < .001) and 2% (95% CI, -1.1 to 4.3%, P = NS), respectively; the number of new starts decreased by 3% (95% CI, -13% to 7%, P = NS) and 2% (95% CI, -20% to 16%, P = NS) and increased by 13% (95% CI -2% to 27%, P = NS), respectively. At the AMC, technical and professional relative value units decreased by 5% and 14%, respectively. The PC made 561 external referrals to the AMC, which resulted in $2.38 million technical and $2.13 million professional charges at the AMC. Fifteen grant submissions ($12.83 million) resulted in 6 awards ($3.26 million). Twenty-two clinical trials involving proton therapy were opened, on which a total of 5% (n = 54) of patients enrolled during calendar years 2017 and 2018. The PC was involved in gift donations of $1.6 million. There was a nonsignificant 37% increase in number of pediatric cases. CONCLUSIONS: Despite a slight decline in AMC photon patient volumes and relative value units, a positive downstream effect was associated with the addition of a PC, which benefited the AMC.

Fertility preservation options in pediatric and adolescent patients with cancer.

The incidence of childhood cancer has steadily increased since the 1950s, with approximately 16,000 children diagnosed each year. However, with the advent of more effective multimodal therapies, childhood cancer survival rates have continued to improve over the past 40 years, with >80% of patients now surviving into adulthood. Fertility preservation (FP) has become an important quality-of-life issue for many survivors of childhood cancer. As a result, the therapeutic options have become less gonadotoxic over time and more patients are being offered FP options. This review examines the indications for consultation, male and female FP options both in the prepubertal patient and adolescent patient, and the unique ethical issues surrounding FP in this vulnerable population. Cancer 2018;124:1867-76. © 2018 American Cancer Society.

The state of advocacy in cancer.

Non-profit advocacy organizations have been important in raising public awareness, promoting education, and enhancing political activism for issues related to cancer. Grassroots efforts aimed at fund-raising have substantially augmented federal funding for community outreach and research. The objective of this review was to evaluate successful accomplishments of several major non-profit organizations that are focused on cancer. A review of news media, medical literature, and financial records (using GuideStar) was performed to access the organizational structure and productivity of several successful cancer advocacy organizations. Compared to other cancer advocacy groups, the American Cancer Society is the oldest (>100years old) and worth the most with net assets of over $1.25 billion dollars and an annual total revenue of over $900 million dollars. The ACS also has the highest overhead at 41%. Most of the gynecologic cancer advocacy groups are approximately 20years old and have collective total annual revenue of over $17M dollars. The Ovarian Cancer Research Fund has been the most successful at raising funds and building net assets to date while maintaining an overhead of <10%. The most active and financially successful cancer organizations tend to be older, have higher overhead, spend less on total administration, spend more on fund-raising, have more events (rather than a limited number), and use aggressive social media strategies.

Scalable, sustainable cost-effective surgical care: a model for safety and quality in the developing world, part I: challenge and commitment.

BACKGROUND: With an estimated backlog of 4,000,000 patients worldwide, cleft lip and cleft palate remain a stark example of the global burden of surgical disease. The need for a new paradigm in global surgery has been increasingly recognized by governments, funding agencies, and professionals to exponentially expand care while emphasizing safety and quality. This three-part article examines the evolution of the Operation Smile Guwahati Comprehensive Cleft Care Center (GCCCC) as an innovative model for sustainable cleft care in the developing world. METHODS: The GCCCC is the result of a unique public-private partnership between government, charity, and private enterprise. In 2009, Operation Smile, the Government of Assam, the National Rural Health Mission, and the Tata Group joined together to work towards the common goal of creating a center of excellence in cleft care for the region. RESULTS: This partnership combined expertise in medical care and training, organizational structure and management, local health care infrastructure, and finance. A state-of-the-art surgical facility was constructed in Guwahati, Assam which includes a modern integrated operating suite with an open layout, advanced surgical equipment, sophisticated anesthesia and monitoring capabilities, central medical gases, and sterilization facilities. CONCLUSION: The combination of established leaders and dreamers from different arenas combined to create a synergy of ambitions, resources, and compassion that became the backbone of success in Guwahati.

Advancing neurosurgery through translational research.

Every year, the number of published research articles increases significantly. However, many potentially useful ideas are lost in this flood of data. Translational research provides a framework through which investigators or laboratories can maximize the likelihood that the product of their research will be adopted in medical practice. There are 2 recognizable models of translation appropriate for the majority of research: investigator driven and industry enabled. Investigator-driven research has more range because it does not have to consider the profit margin of research, but it is a slow process. The industry-enabled model accelerates the translational research process through the power of industry funding but is interested primarily in products with potential for profit. Two cases are examined to illustrate different methods of partnering with industry. IMRIS is a company founded by investigators to distribute intraoperative magnetic resonance imaging technology based on a movable high-field magnet. It took 7 years for IMRIS to make its first sale, but it is now a successful company. With neuroArm, a surgical robot, investigators decided to sell the intellectual property to an established company to ensure successful global commercialization. Translational research advances medicine by creating and distributing effective solutions to contemporary problems.

Similarities and differences in philanthropic and federal support for medical research in the United States: an analysis of funding by nonprofits in 2006-2008.

PURPOSE: The medical community currently has no detailed source of information on philanthropic research funding. The authors sought to identify trends in research funding by members of the Health Research Alliance (HRA), a consortium of nonprofit funders of biomedical research, and compare findings with research support from the federal government. METHOD: Thirty-two HRA members uploaded information about grants with start dates in 2006, 2007, and 2008. Data were collected about each grant, investigator, and recipient institution. Disease categorization codes were assigned by a computer process similar to that used by the National Institutes of Health (NIH). RESULTS: In the three years under study, HRA members awarded 9,934 grants, totaling $2,712,418,254 in research and training support. Grant funding increased by 26% between 2006 and 2008. In contrast, NIH research spending increased by only 3% over the same time. Fifty-six percent of HRA grant dollars supported research projects, whereas 30% supported career development and training. During the same period, more than two-thirds of NIH grant dollars supported research projects, although NIH invested proportionally less in career development and training (7%). The largest proportion of HRA grant dollars addressed cancer, followed by diabetes and genetics. Sixty-three percent of HRA-supported investigators were men and 36% were women; 66% of investigators were white, 32% Asian, and fewer than 2% black. CONCLUSIONS: These results indicate that nonprofit organizations play an important role in developing careers and advancing research in significant disease areas such as cancer and diabetes, and in basic science areas such as genetics.