A study shows the disadvantages of medical crowdfunding
A study shows the disadvantages of medical crowdfunding
(Reuters Health) - While crowdfunding platforms can fill insurance gaps, helping patients pay for essential care and avoiding medical debt, they are also being used to raise large sums of money for ineffective and experimental treatments. , suggests a recent study.
The researchers found numerous campaigns to raise funds to pay for unproven therapies, according to the study published in JAMA.
"Large sums of money are being collected for dangerous, marginal and ineffective interventions known without responsibility by fundraisers or providers of what are often extremely expensive, useless or even harmful procedures," said co-author Art. Caplan , specialist in medical ethics of the NYU School of Medicine in New York City.
To take a closer look at the problem, Caplan and his colleagues focused on the largest collective financing site, GoFundMe, and three other well-run sites that allowed for medical fundraising: YouCaring, CrowdRise, and FundRazr. They focused on five treatments that have no scientific support or are experimental or potentially dangerous: homeopathy or naturopathy for cancer; hyperbaric oxygen therapy for brain injury; Stem cell therapy for brain and spinal cord injuries; and long-term antibiotic therapy for chronic Lyme disease.
The researchers identified all existing fundraising campaigns published from November 1, 2015 through December 11, 2017 using the search terms related to the therapies of interest. Of the 1,636 campaigns identified by the researchers, 1,059 mentioned the intention to use the funds collected for one of the five treatments. These campaigns sought a total of more than $ 27 million. The vast majority, 98 percent of the campaigns, were in GoFundMe.
In the end, these crowdfunding campaigns raised a total of $ 6.8 million, or approximately 25 percent of what was requested. The largest proportion, almost $ 3.5 million, was raised in 474 campaigns to raise funds for homeopathic or naturopathic treatments for cancer.
The 190 campaigns to raise funds for hyperbaric oxygen therapy for brain injuries reached almost $ 785,500 of the $ 4 million sought.
The stem cell therapy campaigns for brain injuries, which sought nearly $ 6 million, raised $ 1.25 million, and the stem cell therapy campaigns for spinal cord injuries, which sought $ 2.6 million, raised $ 590,446. Campaigns to raise funds for long-term antibiotic therapy for chronic Lyme sought approximately $ 2.16 million and raised approximately $ 690,000.
The dangers of such campaigns, said Caplan, reside in the lack of regulation.
"Generous donors are robbing donors and desperate families are exploiting desperate patients and families," he said. "Crowdsourcing sites in health care should insist on standard campaigns that indicate where the money goes, what happens if all the requested money is not collected, what the return policy is and that something should be published about the result of the intervention if it is obtained. "
While the study opens the discussion on an important issue, it confuses the problem by combining clearly unproven therapies, such as homeopathy to treat cancer, with treatments that are being tested in clinical trials, such as stem cell therapy for breast cancer. spinal cord and hyperbaric oxygen over brain injury, said Lisa Parker, director of the Center for Bioethics and Health Law at the University of Pittsburgh.
However, there are two obvious disadvantages to collective funding for these treatments, Parker said. First, patients can harm their health if they use money financed by crowdfunding to pay for therapies that have proven not to work and previous proven treatments. Secondly, if they use money financed with collective funds to pay for experimental therapies outside of clinical trials, that denies society the information it would get if the patient were part of the clinical trial.
The findings came as no surprise to Dr. Jeffrey Kahn, director of the Johns Hopkins Berman Bioethics Institute. "It's the predictable consequence of people's ability to reach the public without intermediaries, of trust or without trust," Kahn said. "It's a way to get around these intermediaries, be they doctors or insurance companies, to get what they want to achieve."
But intermediaries "serve a purpose," Kahn said. "In this case, it's about protecting people from spending their money on things that do not work or that can hurt them." This is not a new problem, do you remember laetrile and the people who go to Mexico to treat cancer? an extract from the apricot pits that was discovered not only was not useful but also harmful. "
SOURCE: bit.ly/2PQEVqB JAMA, online October 23, 2018.
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