Leetchi: The motives, causes of death, and disease burden of crowdfunded health projects

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Unmet needs due to financial strains

On Leetchi, all four types of crowdfunded health projects classified by Renwick and Mossialos [51] were present. The huge majority of campaigns aimed at financing expenses for medical services. Not-for-profit health initiatives served as a motive for crowdfunding in around 15% of campaigns in the form of fundraising for medical institutions or charitable organizations, and patient education and disease awareness campaigns. Donations were requested for research less frequently. Commercial health innovation was listed in only one fraudulent campaign [83] discussed in subsection 4.4 in more detail.

Although the expenses that individuals aimed to finance via crowdfunding varied greatly, unmet medical needs due to financial strains were listed in almost 80% of crowdfunding campaigns (Table 5).Footnote2 Across all conditions, donations were most frequently requested for therapies, typically additional or complementary therapy not financed by the health insurance fund. Animal-assisted therapies were also high on the wish list; although these therapies are not always covered by statutory health insurance, they are expected to ease the emotional and physical burden of affected individuals and families. A similar argument can be made for equipment to facilitate mobility.

The medical condition that individuals were suffering from resulted in significant unmet non-medical needs as well. Individuals could not pay the bill they received, and they could not go on holidays they desired; their (or their children’s) poor health status typically did not allow them to earn sufficient income. Living expenses was the second most frequently listed cost type in accordance with the financial strain that several disorders and diseases exert on families. This finding is in line with the empirical evidence showing that poor health status may be associated with poor socioeconomic conditions, labelled as social drift or selection in the literature [84]. If affected families enjoyed better socioeconomic status, they could finance these expenses without any difficulty.

Crowdfunding motives, causes of death, and disease burden
There is a weak association between the most frequent causes of death and the condition which motivated individuals to ask for donations. According to the WHO, in upper-middle income countries the top ten causes of death are as follows: ischaemic heart disease; stroke; chronic obstructive pulmonary disease, trachea, bronchus and lung cancer; Alzheimer’s disease and other dementias; lower respiratory infections; diabetes mellitus; road injury; liver cancer, stomach cancer [85]. From the most frequent causes of death only three overlap with the most frequently mentioned motives in medical crowdfunding campaigns: cancer (the most frequent motive for crowdfunding); accident (the 4th most frequent motive for crowdfunding), and elderly and dementia (the 7th most frequent motive for crowdfunding). Regarding cancer, when cancer is screened by type, lung cancer and cancer affecting the gastrointestinal or digestive system amount to more than 30% of cases (Table 2). As a result, these two cancer types alone assure that cancer is among the top ten motives for medical crowdfunding.

There is also no strong association between the disease burden measured by disability-adjusted life years and the condition which motivated individuals to ask for donations. In the remaining part of this subsection that association is discussed. First, we show signs of a strong positive association and then we elaborate on those conditions where no association can be found.

Cancer is the most frequent motive for crowdfunding, it is named in more than one-fourth of campaigns. According to the Global Burden of Disease (GBD) Study 2017 cancer is the second leading cause of disability worldwide and it exerts enormous emotional, physical and financial strain on patients, families and health systems [86]. Given the high severity of health loss and the related financial burden, it is no surprise that even insured cancer sufferers ask for donations, most frequently for alternative and highly innovative therapies not financed by the health insurance fund. At the same time, in 12 campaigns donations were also asked for uninsured non-residents reflecting the fact that health systems in low- and middle-income countries typically lack resources to manage cancer. In crowdfunding campaigns, the most frequently listed cancer type by body location or system only partly overlaps with the most common types of cancer as listed by the WHO [87]. For example, while lung, breast, and stomach cancer were high on the list in both cases, brain tumour and leukaemia were frequently mentioned in crowdfunding campaigns (Table 2), but not listed as the most common types of cancer by the WHO [87].

The second most frequent medical condition appearing in around one-tenth of crowdfunding campaigns was mental disorder, typically depression. WHO lists depression as the leading cause of disability worldwide and as a major contributor to the overall global burden of disease [88]. In Europe, mental disorder is ranked fifth when measuring the overall disease burden with the number of years lost due to ill-health, disability or early death [89]. In a health system with universal coverage those suffering from mental disorder asked for donations most frequently for animal-assisted therapies to improve their mental health and for living expenses to compensate for lost income.

In Europe, musculoskeletal disorders are ranked as the third most disabling condition when measured by disability-adjusted life years [89]. Musculoskeletal disorders affect human body movement or musculoskeletal system; these are injuries and disorders characterised by limited mobility, dexterity, and functional ability [90]. Musculoskeletal condition-related disabilities and accidents resulting in injuries were among the most frequent conditions prompting individuals to turn to crowdfunding in Germany, reflecting how burdensome and severely disabling these conditions are. Donations were the most frequently requested for easing mobility, for example, wheelchair-accessible vehicles and handicapped-accessible homes. Similarly, therapeutic fees were also repeatedly mentioned for both musculoskeletal condition-related disabilities and accidents: typically, additional or innovative therapies not financed by the health insurance fund.

In Europe, neurological disorders are ranked as the fourth most disabling condition when measured by disability-adjusted life years [89]. Among others, these disorders include epilepsy, Alzheimer’s disease and other dementias, Parkinson’s disease, multiple sclerosis, and cerebrovascular diseases. Elderly and dementia, sclerosis, and epilepsy were among the most frequent conditions prompting medical crowdfunding. In addition to living expenses, donations were asked for elderly care institutions, for research about sclerosis, and for watch dogs and additional and innovative therapies for patients with epilepsy.

At the same time, neither cardiovascular diseases, having the highest overall disease burden, nor several other diseases characterized by the highest number of years lost due to ill-health, disability or early death (chronic respiratory diseases, diabetes, kidney and digestive diseases, substance use disorders, skin and subcutaneous diseases, sense organ diseases) featured among the most frequent motives for crowdfunding [89]. One possible explanation for this mismatch could be that for these diseases efficient treatments are available for insured individuals, despite the high disease burden.

Moreover, oral health, lipoedema, genetic disorders and rare diseases, not listed among leading causes of disability worldwide [89], prompted individuals to turn to crowdfunding relatively frequently. For oral health, individuals typically requested donations from the crowd when treatments were available but not covered by the health insurance fund. For lipoedema, no effective treatment exists: only the symptoms can be alleviated by removing fat (liposuction). In the past, the statutory health insurance typically did not cover the cost of these liposuction procedures, which prompted desperate patients to ask for donations. Very recently, however, the highest decision-making body of the joint self-government of health insurance funds in Germany, the Gemeinsame Bundesausschus defined a patient group eligible for liposuction at the expense of statutory health insurance [82]. Children suffering from genetic disorders and rare diseases exert enormous emotional and financial strain on families; families typically live only on one income and ask for donations for therapies not covered by the health insurance fund, either due to their additional or innovative nature. Donations for research activities were also relatively frequently mentioned with the hope that the disorder might soon be cured.