Americans Fell for a Theranos-Style Scam 100 Years Ago. Will We Ever Learn?
The huckster understands what people want – an easy route to good health -- and figures out just how to provide it as long as no one asks too many questions.
"Americans are very much prone to this sort of thinking: Give me a pill or give me a magical bean that can make me lose weight!"
The keys to success: Hoopla, fancy technology, and gullibility. And oh yes, one more thing: a blood sample. Well, lots and lots of blood samples. Every testing fee counts.
Sound familiar? It could be the story of the preternaturally persuasive Elizabeth Holmes, the disgraced founder of Theranos who stands accused of perpetrating a massive blood-testing fraud. But this is a different story from a different time, one that dates back 100 years but sounds almost like it could unfold on the front page of The Wall Street Journal today.
The main difference: Back then, watchdogs thought they'd be able to vanquish fake medicine and scam science. Fat chance, it turned out. It seems like we're more likely to lose-weight-quick than make much of a dent into quackery and health fraud.
Why? Have we learned anything at all over the past century? As we sweep into a new decade, experts says we're not as advanced as we'd like to think. But the fight against fraud and fakery continues.
Quackery: As American As America Itself
In the 17th century, British healers of questionable reputation got a new name -- "quack," from the Dutch word "quacksalver," which originally referred to someone who treats others with home remedies but developed a new meaning along the lines of "charlatan." And these quacks got a new place to sell their wares: the American colonies.
By 1692, a Boston newspaper advertised a patent medicine that promised to cure "the Griping of the Guts, and the Wind Cholick" and – for good measure – "preventeth that woeful Distemper of the Dry Belly Ach." A couple centuries later, the most famous woman in the United States wasn't a first lady or feminist but a hawker of nostrums named Lydia Estes Pinkham whose "vegetable compound" promised to banish "female complaints." One advertisement suggested that the "sure cure" would have saved the life of a Connecticut clergyman whose wife killed him after suffering from feminine maladies for 16 years.
By the early 20th century, Americans were fascinated by electricity and radiation, and both healers and hucksters embraced the new high-tech era. Men with flagging libidos, for example, could irradiate their private parts with the radioactive Radiendocrinator or buy battery-powered electric belts equipped with dangling bits to supercharge their, um, dangling bits.
The Rise of the Radio Wave 'Cure'
Enter radionics, the (supposed) science of better health via radio waves. The idea was that "healthy people radiate healthy energy," and sickness could be reversed through diagnosis and re-tuning, write Dr. Lydia Kang and Nate Pedersen in their 2017 book "Quackery: A Brief History of the Worst Ways to Cure Everything."
Detecting illness and fixing it required machinery -- Dynamizers, Radioclasts and Oscillocasts – that could cost hundreds of dollars each. Thousands of physicians bought them. Fortunately, they could work remotely, for a fee. The worried-and-potentially-unwell just needed to send a blood sample and, of course, a personal check.
Sting operations revealed radionics to be bogus. A skeptic sent a blood sample to one radionics practitioner in Albuquerque who reported back with news of an infected fallopian tube. In fact, the blood sample came from a male guinea pig. As an American Medical Association leader reported, the guinea pig "had shown no female characteristics up to that time, and a postmortem examination yielded no evidence of ladylike attributes."
When Quackery Refused to Yield
The rise of bogus medical technology in the early 20th century spawned a watchdog industry as organizations like the American Medical Association swept into action, said medical historian Eric Boyle, author of 2012's "Quack Medicine: A History of Combating Health Fraud in Twentieth-Century America."
"When quackery was recognized as a major problem, the people who campaigned for its demise were confident that they could get rid of it," he said. "A lot of people believed that increased education, the truths of science, and laws designed to protect consumers would ultimately drive quackery from the marketplace. And then throughout the century, as modern medicine developed, and more effectively treated one disease after another, many observers remained confident in that prediction."
There's a bid to "flood the information highway with truth to turn the storm of fake promotional stuff into a trickle."
But fake medicine persisted as Americans continued their quest to get- healthy-quick… or get-rich-quick by promising to help others to get- healthy-quick. Even radionics refused to die. It's still around in various forms. And, as the Theranos scandal reveals, we're still hoping our blood can offer the keys to longevity and good health.
Why Do We Still Fall for Scams?
In our own era, the Theranos company rose to prominence when founder and CEO Elizabeth Holmes convinced journalists and investors that she'd found a way to cheaply test drops of blood for hundreds of conditions. Then it all fell apart, famously, when the world learned that the technology didn't work. The company has folded, and Holmes faces a federal trial on fraud charges this year.
"There were a lot of prominent, very smart people who bought into the myth of Elizabeth Holmes," a former employee told "60 Minutes," even though the blood tests never actually worked as advertised.
Shouldn't "prominent, very smart people" know better? "People are gullible," said Dr. Stephen Barrett, a psychiatrist and leading quack-buster who runs the QuackWatch website. But there's more to the story. According to him, we're uniquely vulnerable as individuals to bogus medicine.
Scam artists specifically pinpoint their target audiences, such as "smart people," desperate people and alienated people, he said.
Smart people, for example, might be overconfident about their ability to detect fraud and fall for bogus medicine. Alienated people may distrust the establishment, whether it's the medical field or government watchdogs, and be more receptive to alternative sources of information.
Dr. Barrett also points a finger at magical thinking, which comes in different forms. It could mean a New Age-style belief that our minds can control the world around us. Or, as professional quack-buster Alex Berezow said, it could refer to "our cultural obsession with quick fixes."
"Americans are very much prone to this sort of thinking: Give me a pill or give me a magical bean that can make me lose weight! But complex problems need complex solutions," said Berezow, a microbiologist who debunks junk science in his job as a spokesman for the American Council on Science & Health.
American mistrust of expertise makes matters worse, he said. "When I tell people they need to get vaccinated, I'm called a shill for the pharmaceutical industry," he said. "If I say dietary supplements generally don't work, I'm a shill for doctors who want to keep people sick."
What can ordinary citizens do to protect themselves from fake medicine? "You have to have a healthy skepticism of everything," Berezow said. "When you come across something new, is someone trying to take advantage of you? It's a horrible way to think about the world, but there's some truth to it."
"Like any chronic disease, we will have to live with it while we do our best to fight it."
The government and experts have their own roles to play via regulation and education, respectively. For all the criticism it gets, the Food & Drug Administration does serve as a bulwark against fakery in prescription medicine. And while celebrities like Gwyneth "Goop" Paltrow hawk countless questionable medical products on the Internet, scientists and physicians are fighting back by using social media as a tool to promote the truth. There's a bid to "flood the information highway with truth to turn the storm of fake promotional stuff into a trickle," said Dr. Randi Hutter Epstein, a writer in residence at Yale School of Medicine and author of 2018's "Aroused: The History of Hormones and How They Control Just About Everything."
What's next? Like death, taxes and Cher, charlatans are likely to always be with us. Boyle quoted the late William Jarvis, a pioneering quack-buster in the late 20th century who believed health fraud would never be eradicated: "Like any chronic disease, we will have to live with it while we do our best to fight it."
For years, a continuous glucose monitor would beep at night if Dana Lewis' blood sugar measured too high or too low. At age 14, she was diagnosed with type 1 diabetes, an autoimmune disease that destroys insulin-producing cells in the pancreas.
The FDA just issued its first warning to the DIY diabetic community, after one patient suffered an accidental insulin overdose.
But being a sound sleeper, the Seattle-based independent researcher, now 30, feared not waking up. That concerned her most when she would run, after which her glucose dropped overnight. Now, she rarely needs a rousing reminder to alert her to out-of-range blood glucose levels.
That's because Lewis and her husband, Scott Leibrand, a network engineer, developed an artificial pancreas system—an algorithm that calculates adjustments to insulin delivery based on data from the continuous glucose monitor and her insulin pump. When the monitor gives a reading, she no longer needs to press a button. The algorithm tells the pump how much insulin to release while she's sleeping.
"Most of the time, it's preventing the frequent occurrences of high or low blood sugars automatically," Lewis explains.
Like other do-it-yourself device innovations, home-designed artificial pancreas systems are not approved by the Food and Drug Administration, so individual users assume any associated risks. Experts recommend that patients consult their doctor before adopting a new self-monitoring approach and to keep the clinician apprised of their progress.
DIY closed-loop systems can be uniquely challenging, according to the FDA. Patients may not fully comprehend how the devices are intended to work or they may fail to recognize the limitations. The systems have not been evaluated under quality control measures and pose risks of inappropriate dosing from the automated algorithm or potential incompatibility with a patient's other medications, says Stephanie Caccomo, an FDA spokeswoman.
Earlier this month, in fact, the FDA issued its first warning to the DIY diabetic community, which includes thousands of users, after one patient suffered an accidental insulin overdose.
Patients who built their own systems from scratch may be more well-versed in the operations, while those who are implementing unapproved designs created by others are less likely to be familiar with their intricacies, she says.
"Malfunctions or misuse of automated-insulin delivery systems can lead to acute complications of hypo- and hyperglycemia that may result in serious injury or death," Caccomo cautions. "FDA provides independent review of complex systems to assess the safety of these nontransparent devices, so that users do not have to be software/hardware designers to get the medical devices they need."
Only one hybrid closed-loop technology—the MiniMed 670G System from Minneapolis-based Medtronic—has been FDA-approved for type 1 use since September 2016. The term "hybrid" indicates that the system is not a fully automatic closed loop; it still requires minimal input from patients, including the need to enter mealtime carbohydrates, manage insulin dosage recommendations, and periodically calibrate the sensor.
Meanwhile, some tech-savvy people with type 1 diabetes have opted to design their own systems. About one-third of the DIY diabetes loopers are children whose parents have built them a closed system, according to Lewis' website.
Lewis began developing her system in 2014, well before Medtronic's device hit the market. "The choice to wait is not a luxury," she says, noting that "diabetes is inherently dangerous," whether an individual relies on a device to inject insulin or administers it with a syringe.
Hybrid closed-loop insulin delivery improves glucose control while decreasing the risk of low blood sugar in patients of various ages with less than optimally controlled type 1 diabetes, according to a study published in The Lancet last October. The multi-center randomized trial, conducted in the United Kingdom and the United States, spanned 12 weeks and included adults, adolescents, and children aged 6 years and older.
"We have compelling data attesting to the benefits of closed-loop systems," says Daniel Finan, research director at JDRF (formerly the Juvenile Diabetes Research Foundation) in New York, a global organization funding the study.
Medtronic's system costs between $6,000 and $9,000. However, end-user pricing varies based on an individual's health plan. It is covered by most insurers, according to the device manufacturer.
To give users more choice, in 2017 JDRF launched the Open Protocol Automated Insulin Delivery Systems initiative to collaborate with the FDA and experts in the do-it-yourself arena. The organization hopes to "forge a new regulatory paradigm," Finan says.
As diabetes management becomes more user-controlled, there is a need for better coordination. "We've had insulin pumps for a very long time, but having sensors that can detect blood sugars in real time is still a very new phenomenon," says Leslie Lam, interim chief in the division of pediatric endocrinology and diabetes at The Children's Hospital at Montefiore in the Bronx, N.Y.
"There's a lag in the integration of this technology," he adds. Innovators are indeed working to bring new products to market, "but on the consumer side, people want that to be here now instead of a year or two later."
The devices aren't foolproof, and mishaps can occur even with very accurate systems. For this reason, there is some reluctance to advocate for universal use in children with type 1 diabetes. Supervision by a parent, school nurse, and sometimes a coach would be a prudent precaution, Lam says.
People engage in "this work because they are either curious about it themselves or not getting the care they need from the health care system, or both."
Remaining aware of blood sugar levels and having a backup plan are essential. "People still need to know how to give injections the old-school way," he says.
To ensure readings are correct on Medtronic's device, users should check their blood sugar with traditional finger pricking at least five or six times per day—before every meal and whenever directed by the system, notes Elena Toschi, an endocrinologist and director of the Young Adult Clinic at Joslin Diabetes Center, an affiliate of Harvard Medical School.
"There can be pump failure and cross-talking failure," she cautions, urging patients not to stop being vigilant because they are using an automated device. "This is still something that can happen; it doesn't eliminate that."
While do-it-yourself devices help promote autonomy and offer convenience, the lack of clinical trial data makes it difficult for clinicians and patients to assess risks versus benefits, says Lisa Eckenwiler, an associate professor in the departments of philosophy and health administration and policy at George Mason University in Fairfax, Va.
"What are the responsibilities of physicians in that context to advise patients?" she questions. Some clinicians foresee the possibility that "down the road, if things go awry" with disease management, that could place them "in a moral quandary."
Whether it's controlling diabetes, obesity, heart disease or asthma, emerging technologies are having a major influence on individuals' abilities to stay on top of their health, says Camille Nebeker, an assistant professor in the School of Medicine at the University of California, San Diego, and founder and director of its Research Center for Optimal Data Ethics.
People engage in "this work because they are either curious about it themselves or not getting the care they need from the health care system, or both," she says. In "citizen science communities," they may partner in participant-led research while gaining access to scientific and technical expertise. Others "may go it alone in solo self-tracking studies or developing do-it-yourself technologies," which raises concerns about whether they are carefully considering potential risks and weighing them against possible benefits.
Dana Lewis admits that "using do-it-yourself systems might not be for everyone. But the advances made in the do-it-yourself community show what's possible for future commercial developments, and give a lot of hope for improved quality of life for those of us living with type 1 diabetes."
The Grim Reaper Can Now Compost Your Body
Ultra-green Seattle isn't just getting serious about living eco-friendly, but dying that way, too. As of this week, Washington is officially the first state to allow citizens to compost their own dead bodies.
Their bodies, including bones, were converted into clean, odorless soil free of harmful pathogens.
The Lowdown
Keep in mind this doesn't mean dumping your relative in a nearby river. Scientists and organizations have ways to help Mother Nature process the remains. For instance, the late actor Luke Perry reportedly was buried in a mushroom suit. Perry's garment is completely biodegradable and the attached microorganisms help the decomposition process cleanly and efficiently.
A biodegradable burial requires only a fraction of the energy used for cremation and can save a metric ton of CO2. The body decomposes in about a month. Besides a mushroom suit, another option coming down the pike in Washington state is to have your body converted directly into soil in a special facility.
A pilot study last summer by a public benefit corporation called Recompose signed up six terminally ill people who donated their remains for such research. Their bodies, including bones, were converted into clean, odorless soil free of harmful pathogens. That soil—about a cubic yard per person--could then be returned after 30 days to the subjects' families.
Green burials open the door to creative memorials. A tree or garden could be planted with your soil. This method provides a climate-friendly alternative to traditional funerals, circumventing toxic embalming fluid, expensive casket materials and other ecological overhead. The fertile soil could also be given to conservationist organizations.
Next Up
The new legislation in Washington will take effect May 1, 2020. The Pacific Northwest state has one of the highest cremation rates in the nation at 78 percent, only second to Nevada. Rising climate change and increased interest in death management will only speed this discussion to the forefront in other states.
A biodegradable burial requires only a fraction of the energy used for cremation and can save a metric ton of CO2.
It's also worth noting Perry wasn't buried in Washington State, but in Tennessee. It is unknown where exactly he was laid to rest, nor if it was done under a legal precedent or special exception.
According to the Green Burial Council, each state varies on how and where you can bury someone. Home burials are usually legal, but to do so requires establishing an official cemetery area on the property. How someone is buried has even more dynamic legislation. There will be new discussions about how neighbors contend with nearby decomposing bodies, legal limitations to private burial techniques, and other issues never addressed before in modern mainstream America.
Open Questions
It's unclear if green burials will be commonplace for those with less financial means or access. Mushroom suits average a couple thousand dollars, making them more expensive than a low-end casket. There are also the less obvious expenses, including designating the place of burial, and getting proper burial support and guidance. In short, you likely won't go to the local funeral home and be taken care of properly. It is still experimental.
As for "natural organic reduction" (converting human remains to soil in reusable modular vessels), Recompose is still figuring out its pricing for Washington residents, but expects the service to cost more than cremation and less than a conventional burial.
For now, environmentally sustainable death care may be comparable to vegetarianism in the 1970s or solar paneling in the 1980s: A discussion among urbanites and upwardly-mobile financial classes, but not yet an accessible option for the average American. It's not a coincidence that the new Washington law received support in Seattle, one of the top 10 wealthiest cities in America. A similar push may take off in less affluent areas if ecological concerns drive a demand for affordable green burial options.
Until then, your neighborhood mortician still has the death business on lock.