Introduction

Crowdfunding is defined as financing predetermined aims through pooling of small contributions [1]. Collections for health needs via Internet donations are a novel phenomenon and have gained considerable public attention.

Thus, medical crowdfunding emerged, which is willingly used for financing therapies for children with rare diseases and patients with malignancies [2–4].

However, there are concerns that collections may be spent on unproven therapies [5], diverting funding to risky clinical trials [6].

Rheumatic diseases are one of the leading causes of disability [7] and are related to preterm mortality [8]. The advent of biological drugs impedes the development of irreversible consequences of many rheumatic diseases. However, novel therapies are costly and could be unavailable for many patients. Simultaneously, rheumatic diseases often require regular rehabilitation and orthopedic surgery, which some public healthcare systems may struggle to provide.

In such settings, medical crowdfunding might help cover unmet medical needs of people suffering from rheumatic illness. Yet, there is still a dearth of knowledge on crowdfunding for patients suffering from rheumatic diseases.

We aimed to characterize medical crowdfunding campaigns for the needs of patients with rheumatic diseases.

Material and methods

The study had a retrospective character and according to local regulations it did not require Ethical Board approval. We utilized data from the largest medical crowdfunding website in Poland, Siepomaga.pl, from the period 2009–2017. A description of the data collection process is presented elsewhere [2].

Initially, we selected all campaigns with at least one disease that was noted as affecting the musculoskeletal system and connective tissue according to the International Statistical Classification of Diseases and Related Health Problems, 10^th Revision (ICD-10; Chapter M) [9].

Further, all collections for patients with at least one rheumatic disease (inflammatory arthropathy, connective tissue disease, vasculitis, bone and/or cartilage disease) were included. We carefully analyzed all included collections and excluded campaigns that raised funds for goals unrelated to rheumatic disease treatment.

For example, if a campaigner suffered from multiple comorbidities, including rheumatoid arthritis, but the aim of the collections was not mainly related to the treatment of rheumatoid arthritis, we excluded the campaign. We also excluded cases of injuries and/or post-traumatic complications. For data analysis descriptive statistics was used.

Results

Overall, 54 (2%) campaigners admitted suffering from at least one disease of the musculoskeletal system and connective tissue disease according to ICD-10 out of all 2,656 campaigns. Finally, we included 23 (0.9%) collections. The median age of campaigners was 25 (interquartile range: 8–43), and 13 of 23 (56.3%) were male. Fifteen of 23 (65.2%) campaigns collected an amount of funds at least equivalent to the financial target. The median amount of collected funds was 3,369 (1,214–9,593) euros. Table I contains the characteristics of the analyzed collections.

The number of collections was as follows: surgery (n = 7), conservative treatments (n = 10) (medications and/or rehabilitation), medical equipment or its repair (n = 5), and search for proper diagnosis by a foreign specialist (n = 1).

Discussion

Approximately one out of one hundred crowdfunding campaigns were dedicated to the needs of people suffering from rheumatic diseases. The previous research found that collections for adults with financial targets higher than 4,000 euros were less likely to be successful [2].

Rheumatic and musculoskeletal diseases were not statistically significantly associated with lower or higher odds of financial success [2]. In the analyzed subpopulation, the age of campaigners was mainly below 50 years. It may be related to limited Internet access and knowledge about medical crowdfunding among the middle-aged and the elderly.

One-third of the collections were dedicated to patients who needed surgery. Generally, the described procedures were non-trivial and concerned reoperations to repair previous surgical complications or to enhance mobility. Patients in the Polish public healthcare system on average wait the longest for major orthopedic procedures among comparable countries [10]. Hence, it is to be expected that some people may seek solutions to their health problems in the private sector.

There were four collections for children suffering from TNF receptor associated periodic syndrome (TRAPS) to buy anakinra. Currently, the drug is refunded via a drug program for treating TRAPS [11], but in the years 2009–2017, anakinra for TRAPS could be financed only as an out-of-pocket purchase. Importantly, financial targets significantly differed between these four campaigns. A dose of anakinra in TRAPS is related to both body mass and the severity of the disease, which may explain the disproportions in financial targets.

Regular physical activity and rehabilitation are fundamental parts of long-term rheumatic disease management. However, the previous analysis found that campaigns collecting funds for rehabilitation were less likely to reach the financial target [2].

In contrast to surgery or novel drugs, rehabilitation could not be perceived as a “therapeutic miracle”; because of limited perceived efficaciousness, crowdfunding for rehabilitation may receive less social interest and donations [12].

The Polish public healthcare system does not fully finance the medical equipment mentioned in several campaigns. For example, the Polish National Health Fund (NFZ) provides a discount for electric wheelchairs up to 3,000 Polish zloty (~ 650 euro), but only for patients with at least bilateral limb paralysis and/or paresis. Therefore, medical crowdfunding may meet the needs of patients with rheumatic disease who suffer from immobility.

Conclusions

Polish people with rheumatic diseases collect funds via medical crowdfunding, mostly for needs not covered by public healthcare or to obtain better health services in the private sector.

Contribution: Mikołaj Kamiński and Aleksandra Borys performed preselection of records and they were further checked by Paweł Hrycaj. Finally all authors approved the final version of the paper.