Disturbing news that it appears the market for dubious or outright fraudulent cures is now in friends asking friends to fund those treatments.
Two recent reports add to the literature on the use of crowdfunding platforms to support the pursuit of unproven treatments for serious health problems:
- One research team looked at the largest crowdfunding platform (GoFundMe) and three other well-trafficked sites that permit medical crowdfunding (YouCaring, CrowdRise, and Fund Razr). The search terms they used were related to (a) homeopathy or naturopathy for cancer, (b) hyperbaric oxygen therapy (HBOT) for brain injury, (c) stem cell therapy for brain injury, and (d) spinal cord injury, and (e) long-term antibiotic therapy for “chronic Lyme disease”—all of which the researchers considered poorly supported and/or potentially dangerous. The study found that from Nov 1, 2015 through December 11, 2017, 1,059 campaigns had sought a total of $27.25 million and raised nearly $6.8 million. GoFundMe hosted 98% of the campaigns, YouCaring had 2%, and the others had none that met the researchers’ inclusion criteria. [Vox F and others. Medical crowdfunding for scientifically unsupported or potentially dangerous treatments. JAMA 320:1705-1706, 2018]
- Another research team searched GoFundMe in June 2018 for campaigns that included the words “cancer” and variations on the word “homeopathy.” They found 220 unique campaigns with all but eight located in the United States and Canada. The campaigns, which mentioned 26 unproven interventions, requested nearly US $5.8 million and garnered pledges of more than $1.4 million. In addition to homeopathy, the most common methods were dietary changes such as juicing and organic foods (39% of campaigns). The other methods for which funding was sought by at least 10% of the campaigns were: (a) dietary supplements and herbal remedies, (b) vitamin C infusions, and (c) oxygen, ozone, and hyperbaric treatments. Unsubstantiated claims for the treatments sought were made in 29% of the campaigns. Among those seeking the treatments: (a) 38% wanted to try every available treatment and use it in addition to standard treatment; (b) 29% chose to forgo standard treatment because of fear of adverse effects or doubts about effectiveness, and (c) 31% could not pursue standard treatment for financial or medical reasons. At least 28% had died after their campaign began. [Snyder J, Caulfield T. Patients’ crowdfunding campaigns for alternative cancer treatments. Lancet Oncology. DOI:https://doi.org/10.1016/S1470-2045(18)30950-1, 2019]
Past issues of Consumer Health Digest have summarized the findings of studies of crowdfunding that involved cancer patients in the UK, claims that stem cell treatments were being offered through research studies, and claims that stem cell treatments had been proven effective.
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The NY Times has a fascinating article on the latest research into the Placebo Effect. The Times does a good job of outlining the history of the Effect, including the beginning of modern science’s interest in it, with none other than Benjamin Franklin in the mix. The latest research helps paint a picture that if correct, could help us understand the interconnection between faith healing, eastern medicine, therapeutic touch, and western medicine. It also holds out the possibility of even making our drugs more effective. Read on…
The latest issue of Consumer Health Digest reports on a researcher who has identified 30 companies in Canada engaged in direct to consumer marketing of stem cells. Here’s an exerpt from the Consumer Health Digest.
Based on a series of Web searches, a researcher has identified 30 companies in Canada engaged in direct-to-consumer marketing of stem cell treatments offered at 43 distinct clinics in six provinces, with most located in Ontario. Her findings included:
- Most of the companies advertised stem cell treatments only for orthopedic diseases and injuries, pain management, and sports-related injuries, but other companies offered treatments for cosmetic purposes, hair loss, neurological, aging, immunological diseases, muscular dystrophy, lung diseases, urological diseases, sex-related issues, and cardiac disease.
- Sixteen of the companies disclosed no risks in Web ads, while the other 14 companies typically described only the possibility of short-term problems
- Only two sites disclosed that serious risks were possible.
- None provided information about long-term follow-up care.
- Most companies advertised positive but unquantified claims, but five made explicit quantitative claims without links to supportive evidence.
- Most of the companies did not disclose what they charge for their procedures. [Turner L. Direct-to-consumer marketing of stem cell interventions by Canadian businesses. Regenerative Medicine. Epub ahead of print, Sept 26, 2018]
To sign up for the Consumer Health Digest go to this web page.
I’m posting this because of the notoriety of the man charged in this. Given the large number of alternative medicine followers here on the Olympic Peninsula I thought this would be of interest.
The Los Angeles City Attorney has charged Timothy Morrow, 83, with child abuse causing death and practicing medicine without a license. The City Attorney’s press release describes the circumstances this way:
During 2014, Morrow allegedly began to treat the 13-year-old victim for his diabetes by prescribing herbs in lieu of the insulin the victim’s pediatrician had prescribed. In August, 2014, Morrow allegedly came to the family’s Harbor Gateway home to treat the 13-year-old victim after he became sick and semi-comatose due to complications from his Type-1 diabetes. Shortly before the victim died, Morrow allegedly told the victim’s parents not to give him insulin but instead to administer the herbal oils that he was selling. The victim suffered a cardiac arrest and died the next day as a result of complications from his diabetes. The medical examiner determined the victim would have lived had he received proper medical treatment.
Morrow’s YouTube channel offers 40 videos and has 2,700 subscribers. His current “Message from Our Founder”on the Common Sense Herbal Products Web site describes him as a “Master Herbalist and Iridologist” to whom God began talking about herbs over 25 years ago. The site includes a page offering a “Social Network Marketing System” as a business opportunity along with a home business compensation plan structured like many other multilevel marketing companies. Morrow’s mission page claims: “Keep in mind: there are no side effects to herbs, no labels that read “Keep Out of Reach of Children.” These herbs, in fact, are gentle enough for children.”
According to Morrow’s attorney, Sanford Perliss, since Edgar’s death, “no one did anything to indicate that Morrow did anything wrong”—no efforts have been made to take away his business license and Edgar’s parents have not sued him. If convicted of the charges, which are misdemeanors, Morrow faces up to two years in jail and a $10,000 fine. He is scheduled for arraignment on March 27th. [Herbalist charged in death of boy with diabetes. CBS/AP, March 7, 2018]
Having been in the room with my late wife at a fake stem cell facility in Mexico, I highly suggest you take this information into consideration before considering doing this therapy in this way. Feel free to contact me for more information on what we experienced.
An investigation of 368 Web sites found through Google with search terms combining stem cell with various buzzwords and practitioner names associated with “complementary and alternative medicine” has revealed:
- 243 sites marketed stem cell therapies and 116 marketed other interventions where stem cells were mentioned in the description of the treatment or its effects. The other interventions included platelet-rich plasma injections (88), prolotherapy (19) and others (9).
- The cells used for transplantation were said to be derived from adipose (fatty) tissue (112 sites), bone marrow (100 sites), blood (28 sites), umbilical cord (26 sites), and other sources [e.g., placenta, amniotic sac, amniotic fluid, embryonic stem cells] (35 sites).
- 20 sites advertised plant cell-based treatments and products (e.g., skin creams).
- The most common advertised treatment targets were: bone, joint, and muscle pain/injury (182 sites); diseases or maladies (82 sites); cosmetic concerns (52 sites); non-cosmetic aging (44 sites); and sexual enhancement (18 sites).
- 80% of the sites were for clinics in the USA; the rest were located in 17 other countries.
- The practitioner types mentioned on the 368 sites included medical doctors (161), naturopaths (63), chiropractors (61), acupuncturists (36), midwives (33), homeopaths (27) and massage therapists (13). Some sites mentioned more than one and some sites listed none.
- Hyperbolic language was found on 32% of the sites.
- Only 31% of the sites mentioned the regulatory status of the intervention, and only 33% noted that the therapy was unproven.
- Only 19% of the sites stated there was limited evidence of efficacy of the intervention and 13% said there was evidence of inefficacy.
- Only 25% of the sites mentioned general risks of the interventions.
The investigators concluded:
Many clinics seem to be engaging in scienceploitation, which can seriously obfuscate public discourse, mislead the public and make it difficult to discern real science from marketing claims that merely reference scientific sounding terminology. The marketing of unproven stem cell therapies has the potential to harm patients and to harm the reputation of stem cell science. It is incumbent on regulators and policymakers to take a proactive approach to managing the risks associated with the growing private market for stem cell-related interventions, and addressing misleading marketing practices is an important part of this strategy.
[Murdoch B and others. Exploiting science? A systematic analysis of complementary and alternative medicine clinic websites’ marketing of stem cell therapies. BMJ Open 8(2), March 2, 2018]
Doctor Barrett in his analysis, points out that while the notion of integrative health and wellness is a popular term today, that it’s meaning is very unclear, and has been used to cover many phony health care practices. I post it here more as FYI only. As long as this steers towards science based application rather than marketing of non scientifically based claims, I’m in favor of it.
Representatives Jared Polis (D-CO) and Mike Coffman (R-CO) have launched the Integrative Health and Wellness Congressional Caucus in the U.S. House of Representatives. The caucus’s stated purpose is to “serve as a non-partisan educational forum for legislators to receive up-to-date information from experts related to best practices and new research, and to discuss legislative and administrative opportunities for integrative health.” The press release announcing their move states:
Integrative health emphasizes prevention, health creation, health promotion and general well-being, and includes therapies like acupuncture, chiropractic, and mindfulness. At a time when the most expensive drains on our nation’s health dollars are chronic conditions like diabetes, heart disease, and high blood pressure, integrative approaches can offer improved outcomes with lower costs. While at least a third of Americans use complementary or alternative medicines, access is often inconsistent. This caucus will provide a platform for legislators to participate together and focus on the important opportunity that integrative health and wellness approaches offers across federally funded health programs, and find ways to make these solutions more available to the American people. [Polis, Coffman launch bipartisan Integrative Health and Wellness Caucus, citing successes of integrative health treatments. Office of Jared Polis. Press release, Oct 25, 2017]
“Integrative medicine” does not have a definable scope. It is a marketing slogan used by practitioners who claim to combine “alternative” and mainstream approaches to medicine to provide the best of both approaches. This may sound reasonable, but (a) the term is actually a smokescreen behind which enthusiasts routinely use dubious practices and (b) some of the preventive measures they embrace are part of standard care and others simply don’t work. [Barrett S. Be wary of “alternative,” “complementary,” and “integrative” health methods. Quackwatch, Oct 30, 2017] It remains to be seen whether caucus members will promote approaches that will improve health care in the U.S. or merely add to its cost.
Interesting story on Homeopathy. There is no science behind homeopathy and this review of it by a noted association, gets to the core of the issue.
The British Veterinary Association’s journal has published two articles that place homeopathy in historical and scientific perspective. Although the articles concern veterinary practices, their conclusions are equally relevant to human drugs. The first article notes that, “For many drugs the mechanism of action is proven, and for most drugs without proven mechanisms of action, scientifically plausible mechanisms exist.” [Lees P and others. Comparison of veterinary drugs and veterinary homeopathy: Part 1. Veterinary Record, Aug 12, 2017] In contrast, the second article notes that “Homeopathy . . . is top down and faith-based; governed by arbitrary laws, invented by the founder, Hahnemann, which are immutable. As such, homeopathy is not just unscientific, it is a genuinely mystical belief system.” [Lees P and others. Comparison of veterinary drugs and veterinary homeopathy: Part 2. Veterinary Record, Aug 19/26, 2017]