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."
30 Million People Are Uninsured. New Startup Wants to Connect Them Directly to Doctors.
When Eli Hall was in his thirties, he had a kidney stone that needed surgery. Despite having medical insurance, his out-of-pocket costs for the procedure came to $4,000.
Mira promises that most routine visits will cost around $99 or slightly above.
Hall, an Arizona-based small business owner soon discovered that such costs were proving to be the norm. As a result, he stopped buying insurance altogether. Now he pays in to a subscription-based model of healthcare where $300 per month will get him, his wife, and two children unlimited access (either over the phone or through in-office visits) to doctors in the Redirect Health network. This subscription also meets the Affordable Care Act insurance mandate.
Hall's move away from the traditional insurance care model might have been deliberate, but not everyone is as lucky. In 2018, the Centers for Disease Control and Prevention reported that 30.1 million people under the age of 65 were uninsured in the United States. Now, a new startup called TalktoMira is helping those without insurance access doctors for routine visits — affordably.
The service, accessed through the website (or phone or text), evaluates a user's symptoms and returns recommendations for specific doctors that factor in wait times, traffic conditions, and pricing. Khang T. Vuong, the founder and CEO, expects that doctors will be willing to provide discounts through this model, as they're eliminating the administrative costs associated with the insurance middleman. Some discounts can be as high as 50 percent, according to the website.
Mira promises that most routine visits will cost around $99 or slightly above. "This provides people who can't afford paying $3,000 to $4,000 per year in insurance premiums an alternative to access basic healthcare," Vuong says.
As of press time, Mira is available in the Washington D.C., Northern Virginia, and Dallas, and will soon expand across the country via a partnership with a national network of healthcare providers.
"For those who live in places where we don't have a presence, users can still search for the nearest and least busy urgent cares. The goal is to build a national database of walk-in clinics with straightforward upfront pricing so the 30 million uninsured and 56 million underinsured have access to same or next day primary care at an upfront affordable cost," Vuong says.
Getting Around Traditional Insurance
Mira caters to the uninsured by helping them navigate the healthcare system the moment they need it. "Currently cash patients have to rely mainly on Google for searching for options," Vuong says, adding that patients do also occasionally work with the app ZocDoc for booking. "However [ZocDoc] info has no pricing information; we fill in that much-needed gap," Vuong says. In focus groups TalktoMira conducted, a majority (70 percent) reported cost of service as their main barrier to healthcare.
As Hall's subscription-based model proves, cash-driven access like TalktoMira is not the only option for the uninsured. Direct primary care like the kind that Redirect Health delivers is another way to get around high premiums. It does so by effectively eliminating the administrative costs associated with the middleman, says David Slepak, the director of business development at Redirect. Doctors who are tired of packed schedules and the administrative headaches involved with the insurance model are only too happy to be a part of subscription or cash-based models, explains Vuong.
But TalktoMira and direct primary care models don't resolve the challenges of insurance related to catastrophic events.
James Corbett, Principal at Initium Health, points out the uninsured can also access federally qualified health centers across the country or a free clinic, but these might have problems of long wait times.
"Not a Cure-All"
TalktoMira might not provide the same level of consistency that seeing a primary care doctor does, though Vuong says there are ways to see the same doctor again by choosing them through the system. He adds that TalkToMira also empowers patients by asking them about their satisfaction after the visit and to see if any further checkups might be warranted, thus enabling patients to rate their doctors just like they would any other service provider.
"I might not have one primary care doctor, but I have the entire system behind me," says Hall.
But TalktoMira and direct primary care models don't resolve the challenges of insurance related to catastrophic events. The subscription model won't kick in if the patient has a heart attack and needs to be hospitalized, for example. So patients are also encouraged to purchase a high-deductible, low-premium plan for such contingencies.
"We're spending so much on insurance for the car that we can't afford the gas to drive the car."
Vuong recognizes TalktoMira doesn't solve all the problems related to insurance, but it can at least start by helping to facilitate access to routine visits. Even the insured don't always seek out a doctor because of copays and high deductibles, Slepak says. "We're spending so much on insurance for the car that we can't afford the gas to drive the car," he says.
TalktoMira is hoping that by making routine care accessible, it might both lessen the crunch in emergency rooms where many people don't really belong, and also nip problems in the bud.
"It's not a cure-all, not a panacea," admits Vuong. "It won't get you a knee replacement. But at least I can get you in the system so you might not have to get to that point."
By now you have probably heard something about CRISPR, the simple and relatively inexpensive method of precisely editing the genomes of plants, animals, and humans.
The treatment of disease in fetuses, the liminal category of life between embryos and humans, poses the next frontier.
Through CRISPR and other methods of gene editing, scientists have produced crops to be more nutritious, better able to resist pests, and tolerate droughts; engineered animals ranging from fruit flies to monkeys to make them better suited for scientific study; and experimentally treated the HIV virus, Hepatitis B, and leukemia in human patients.
There are also currently FDA-approved trials to treat blindness, cancer, and sickle cell disease in humans using gene editing, and there is consensus that CRISPR's therapeutic applications will grow significantly in the coming years.
While the treatment of human disease through use of gene editing is not without its medical and ethical concerns, the avoidance of disease in embryos is far more fraught. Nonetheless, Nature reported in November that He Jiankui, a scientist in China, had edited twin embryos to disable a gene called CCR5 in hopes of avoiding transmission of HIV from their HIV-positive father.
Though there are questions about the effectiveness and necessity of this therapy, He reported that sequencing has proven his embryonic gene edits were successful and the twins were "born normal and healthy," although his claims have not been independently verified.
More recently, Denis Rebrikov, a Russian scientist, announced his plans to disable the same gene in embryos to be implanted in HIV-positive women later this year. Futuristic as it may seem, prenatal gene editing is already here.
The treatment of disease in fetuses, the liminal category of life between embryos and humans, poses the next frontier. Numerous conditions—some minor, some resulting in a lifetime of medical treatment, some incompatible with life outside of the womb—can be diagnosed through use of prenatal diagnostic testing. There is promising research suggesting doctors will soon be able to treat or mitigate at least some of them through use of fetal gene editing.
This research could soon present women carrying genetically anomalous fetuses a third option aside from termination or birthing a child who will likely face a challenging and uncertain medical future: Whether to undergo a fetal genetic intervention.
However, genetic intervention will open the door to a host of ethical considerations, particularly with respect to the relationship between pregnant women and prenatal genetic counselors. Current counselors theoretically provide objective information and answer questions rather than advise their pregnant client whether to continue with her pregnancy, despite the risks, or to have an abortion.
In practice, though, prenatal genetic counseling is most often directive, and the nature of the counseling pregnant women receive can depend on numerous factors, including their religious and cultural beliefs, their perceived ability to handle a complicated pregnancy and subsequent birth, and their financial status. Introducing the possibility of a fetal genetic intervention will exacerbate counselor reliance upon these considerations and in some cases lead to counseling that is even more directive.
Some women in the near future will face the choice of whether to abort, keep, or treat a genetically anomalous fetus.
Future counselors will have to figure out under what circumstances it is even appropriate to broach the subject. Should they only discuss therapies that are FDA-approved, or should they mention experimental treatments? What about interventions that are available in Europe or Asia, but banned in the United States? Or even in the best case of scenario of an FDA-approved treatment, should a counselor make reference to it if she knows for a fact that her client cannot possibly afford it?
Beyond the basic question of what information to share, counselors will have to confront the fact that the very notion of fixing or "editing" offspring will be repugnant to many women, and inherent in the suggestion is the stigmatization of individuals with disabilities. Prenatal genetic counselors will be on the forefront of debates surrounding which fetuses should remain as they are and which ones should be altered.
Despite these concerns, some women in the near future will face the choice of whether to abort, keep, or treat a genetically anomalous fetus in utero. Take, for example, a woman who learns during prenatal testing that her fetus has Angelman syndrome, a genetic disorder characterized by intellectual disability, speech impairment, loss of muscle control, epilepsy, and a small head. There is currently no human treatment for Angelman syndrome, which is caused by a loss of function in a single gene, UBE3A.
But scientists at the University of North Carolina have been able to treat Angelman syndrome in fetal mice by reactivating UBE3A through use of a single injection. The therapy has also proven effective in cultured human brain cells. This suggests that a woman might soon have to consider injecting her fetus's brain with a CRISPR concoction custom-designed to target UBE3A, rather than terminate her pregnancy or bring her fetus to term unaltered.
Assuming she receives the adequate information to make an informed choice, she too will face an ethical conundrum. There will be the inherent risks of injecting anything into a developing fetus's brain, including the possibility of infection, brain damage, and miscarriage. But there are also risks specific to gene editing, such as so-called off-target effects, the possibility of impacting genes other than the intended one. Such effects are highly unpredictable and can be difficult to detect. So too is it impossible to predict how altering UBE3A might lead to other genetic and epigenetic changes once the baby is born.
There are no easy answers to the many questions that will arise in this space.
A woman deciding how to act in this scenario must balance these risks against the potential benefits of the therapy, layered on top of her belief system, resources, and personal ethics. The calculus will be different for every woman, and even the same woman might change her mind from one pregnancy to the next based on the severity of the condition diagnosed and other available medical options.
Her genetic counselor, meanwhile, must be sensitive to all of these concerns in helping her make her decision, keeping up to date on the possible new treatments, and carefully choosing which information to disclose in striving to be neutral. There are no easy answers to the many questions that will arise in this space, but better to start thinking about them now, before it is too late.