Science Fact vs. Science Fiction: Can You Tell the Difference?
A portrait of skepticism while reading information online.
Today's growing distrust of science is not an academic problem. It can be a matter of life and death.
Take, for example, the tragic incident in 2016 when at least 10 U.S. children died and over 400 were sickened after they tried homeopathic teething medicine laced with a poisonous herb called "deadly nightshade." Carried by CVS, Walgreens, and other major American pharmacies, the pills contained this poison based on the alternative medicine principle of homeopathy, the treatment of medical conditions by tiny doses of natural substances that produce symptoms of disease.
Such "alternative medicines" take advantage of the lack of government regulation and people's increasing hostility toward science.
These children did not have to die. Numerous research studies show that homeopathy does not work. Despite this research, homeopathy is a quickly-growing multi-billion dollar business.
Such "alternative medicines" take advantage of the lack of government regulation and people's increasing hostility toward science. Polling shows that the number of people who believe that science has "made life more difficult" increased by 50 percent from 2009 to 2015. According to a 2017 survey, only 35 percent of respondents have "a lot" of trust in scientists; the number of people who do "not at all" trust scientists increased by over 50 percent from a similar poll conducted in December 2013.
Children dying from deadly nightshade is only one consequence of this crisis of trust. For another example, consider the false claim that vaccines cause autism. This belief has spread widely across the US, and led to a host of problems. For instance, measles was practically eliminated in the US by 2000. However, in recent years outbreaks of measles have been on the rise, driven by parents failing to vaccinate their children in a number of communities.
The Internet Is for… Misinformation
The rise of the Internet, and more recently social media, is key to explaining the declining public confidence in science.
Before the Internet, the information accessible to the general public about any given topic usually came from experts. For instance, researchers on autism were invited to talk on mainstream media, they wrote encyclopedia articles, and they authored books distributed by large publishers.
The Internet has enabled anyone to be a publisher of content, connecting people around the world with any and all sources of information. On the one hand, this freedom is empowering and liberating, with Wikipedia a great example of a highly-curated and accurate source on the vast majority of subjects. On the other, anyone can publish a blog piece making false claims about links between vaccines and autism or the effectiveness of homeopathic medicine. If they are skilled at search engine optimization, or have money to invest in advertising, they can get their message spread widely. Russia has done so extensively to influence elections outside of its borders, whether in the E.U. or the U.S.
Unfortunately, research shows that people lack the skills for differentiating misinformation from true information. This lack of skills has clear real-world effects: U.S. adults believed 75 percent of fake news stories about the 2016 US Presidential election. The more often someone sees a piece of misinformation, the more likely they are to believe it.
To make matters worse, we all suffer from a series of thinking errors such as the confirmation bias, our tendency to look for and interpret information in ways that conform to our intuitions.
Blogs with falsehoods are bad enough, but the rise of social media has made the situation even worse. Most people re-share news stories without reading the actual article, judging the quality of the story by the headline and image alone. No wonder research has indicated that misinformation spreads as much as 10 times faster and further on social media than true information. After all, creators of fake news are free to devise the most appealing headline and image, while credible sources of information have to stick to factual headlines and images.
To make matters worse, we all suffer from a series of thinking errors such as the confirmation bias, our tendency to look for and interpret information in ways that conform to our intuitions and preferences, as opposed to the facts. Our inherent thinking errors combined with the Internet's turbine power has exploded the prevalence of misinformation.
So it's no wonder we see troubling gaps between what scientists and the public believe about issues like climate change, evolution, genetically modified organisms, and vaccination.
What Can We Do?
Fortunately, there are proactive steps we can take to address the crisis of trust in science and academia. The Pro-Truth Pledge, founded by a group of behavioral science experts (including myself) and concerned citizens, calls on public figures, organizations, and private citizens to commit to 12 behaviors listed on the pledge website that research in behavioral science shows correlate with truthfulness.
Signers are held accountable through a crowdsourced reporting and evaluation mechanism while getting reputational rewards because of their commitment. The scientific consensus serves as a key measure of credibility, and the pledge encourages pledge-takers to recognize the opinions of experts - especially scientists - as more likely to be true when the facts are disputed.
The pledge "really does seem to change one's habits," encouraging signers to have attitudes "of honesty and moral sincerity."
Launched in December 2016, the pledge has surprising traction. Over 6200 private citizens took the pledge. So did more than 500 politicians, including members of US state legislatures Eric Nelson (PA), James White (TX), and Ogden Driskell (WY), and national politicians such as members of U.S. Congress Beto O'Rourke (TX), Matt Cartwright (PA), and Marcia Fudge (OH). Over 700 other public figures, such as globally-known public intellectuals Peter Singer, Steven Pinker, Michael Shermer, and Jonathan Haidt, took the pledge, as well as 70 organizations such as Media Bias/Fact Check, Fugitive Watch, Earth Organization for Sustainability, and One America Movement.
The pledge is effective in changing behaviors. A candidate for Congress, Michael Smith, took the Pro-Truth Pledge. He later posted on his Facebook wall a screenshot of a tweet by Donald Trump criticizing minority and disabled children. However, after being called out that the tweet was a fake, he went and searched Trump's feed. He could not find the original tweet, and while Trump may have deleted it, the candidate edited his own Facebook post to say, "Due to a Truth Pledge I have taken, I have to say I have not been able to verify this post." He indicated that he would be more careful with future postings.
U.S. Army veteran and pledge-taker John Kirbow described how the pledge "really does seem to change one's habits," helping push him both to correct his own mistakes with an "attitude of humility and skepticism, and of honesty and moral sincerity," and also to encourage "friends and peers to do so as well."
His experience is confirmed by research on the pledge. Two research studies at Ohio State University demonstrated the effectiveness of the pledge in changing the behavior of pledge-takers to be more truthful with a strong statistical significance.
Taking the pledge yourself, and encouraging people you know and your elected representatives to do the same, is an easy and effective way to fight misinformation and to promote a culture that values the truth.
Breakthrough therapies are breaking patients' banks. Key changes could improve access, experts say.
Single-treatment therapies are revolutionizing medicine. But insurers and patients wonder whether they can afford treatment and, if they can, whether the high costs are worthwhile.
CSL Behring’s new gene therapy for hemophilia, Hemgenix, costs $3.5 million for one treatment, but helps the body create substances that allow blood to clot. It appears to be a cure, eliminating the need for other treatments for many years at least.
Likewise, Novartis’s Kymriah mobilizes the body’s immune system to fight B-cell lymphoma, but at a cost $475,000. For patients who respond, it seems to offer years of life without the cancer progressing.
These single-treatment therapies are at the forefront of a new, bold era of medicine. Unfortunately, they also come with new, bold prices that leave insurers and patients wondering whether they can afford treatment and, if they can, whether the high costs are worthwhile.
“Most pharmaceutical leaders are there to improve and save people’s lives,” says Jeremy Levin, chairman and CEO of Ovid Therapeutics, and immediate past chairman of the Biotechnology Innovation Organization. If the therapeutics they develop are too expensive for payers to authorize, patients aren’t helped.
“The right to receive care and the right of pharmaceuticals developers to profit should never be at odds,” Levin stresses. And yet, sometimes they are.
Leigh Turner, executive director of the bioethics program, University of California, Irvine, notes this same tension between drug developers that are “seeking to maximize profits by charging as much as the market will bear for cell and gene therapy products and other medical interventions, and payers trying to control costs while also attempting to provide access to medical products with promising safety and efficacy profiles.”
Why Payers Balk
Health insurers can become skittish around extremely high prices, yet these therapies often accompany significant overall savings. For perspective, the estimated annual treatment cost for hemophilia exceeds $300,000. With Hemgenix, payers would break even after about 12 years.
But, in 12 years, will the patient still have that insurer? Therein lies the rub. U.S. payers, are used to a “pay-as-you-go” model, in which the lifetime costs of therapies typically are shared by multiple payers over many years, as patients change jobs. Single treatment therapeutics eliminate that cost-sharing ability.
"As long as formularies are based on profits to middlemen…Americans’ healthcare costs will continue to skyrocket,” says Patricia Goldsmith, the CEO of CancerCare.
“There is a phenomenally complex, bureaucratic reimbursement system that has grown, layer upon layer, during several decades,” Levin says. As medicine has innovated, payment systems haven’t kept up.
Therefore, biopharma companies begin working with insurance companies and their pharmacy benefit managers (PBMs), which act on an insurer’s behalf to decide which drugs to cover and by how much, early in the drug approval process. Their goal is to make sophisticated new drugs available while still earning a return on their investment.
New Payment Models
Pay-for-performance is one increasingly popular strategy, Turner says. “These models typically link payments to evidence generation and clinically significant outcomes.”
A biotech company called bluebird bio, for example, offers value-based pricing for Zynteglo, a $2.8 million possible cure for the rare blood disorder known as beta thalassaemia. It generally eliminates patients’ need for blood transfusions. The company is so sure it works that it will refund 80 percent of the cost of the therapy if patients need blood transfusions related to that condition within five years of being treated with Zynteglo.
In his February 2023 State of the Union speech, President Biden proposed three pilot programs to reduce drug costs. One of them, the Cell and Gene Therapy Access Model calls on the federal Centers for Medicare & Medicaid Services to establish outcomes-based agreements with manufacturers for certain cell and gene therapies.
A mortgage-style payment system is another, albeit rare, approach. Amortized payments spread the cost of treatments over decades, and let people change employers without losing their healthcare benefits.
Only about 14 percent of all drugs that enter clinical trials are approved by the FDA. Pharma companies, therefore, have an exigent need to earn a profit.
The new payment models that are being discussed aren’t solutions to high prices, says Bill Kramer, senior advisor for health policy at Purchaser Business Group on Health (PBGH), a nonprofit that seeks to lower health care costs. He points out that innovative pricing models, although well-intended, may distract from the real problem of high prices. They are attempts to “soften the blow. The best thing would be to charge a reasonable price to begin with,” he says.
Instead, he proposes making better use of research on cost and clinical effectiveness. The Institute for Clinical and Economic Review (ICER) conducts such research in the U.S., determining whether the benefits of specific drugs justify their proposed prices. ICER is an independent non-profit research institute. Its reports typically assess the degrees of improvement new therapies offer and suggest prices that would reflect that. “Publicizing that data is very important,” Kramer says. “Their results aren’t used to the extent they could and should be.” Pharmaceutical companies tend to price their therapies higher than ICER’s recommendations.
Drug Development Costs Soar
Drug developers have long pointed to the onerous costs of drug development as a reason for high prices.
A 2020 study found the average cost to bring a drug to market exceeded $1.1 billion, while other studies have estimated overall costs as high as $2.6 billion. The development timeframe is about 10 years. That’s because modern therapeutics target precise mechanisms to create better outcomes, but also have high failure rates. Only about 14 percent of all drugs that enter clinical trials are approved by the FDA. Pharma companies, therefore, have an exigent need to earn a profit.
Skewed Incentives Increase Costs
Pricing isn’t solely at the discretion of pharma companies, though. “What patients end up paying has much more to do with their PBMs than the actual price of the drug,” Patricia Goldsmith, CEO, CancerCare, says. Transparency is vital.
PBMs control patients’ access to therapies at three levels, through price negotiations, pricing tiers and pharmacy management.
When negotiating with drug manufacturers, Goldsmith says, “PBMs exchange a preferred spot on a formulary (the insurer’s or healthcare provider’s list of acceptable drugs) for cash-base rebates.” Unfortunately, 25 percent of the time, those rebates are not passed to insurers, according to the PBGH report.
Then, PBMs use pricing tiers to steer patients and physicians to certain drugs. For example, Kramer says, “Sometimes PBMs put a high-cost brand name drug in a preferred tier and a lower-cost competitor in a less preferred, higher-cost tier.” As the PBGH report elaborates, “(PBMs) are incentivized to include the highest-priced drugs…since both manufacturing rebates, as well as the administrative fees they charge…are calculated as a percentage of the drug’s price.
Finally, by steering patients to certain pharmacies, PBMs coordinate patients’ access to treatments, control patients’ out-of-pocket costs and receive management fees from the pharmacies.
Therefore, Goldsmith says, “As long as formularies are based on profits to middlemen…Americans’ healthcare costs will continue to skyrocket.”
Transparency into drug pricing will help curb costs, as will new payment strategies. What will make the most impact, however, may well be the development of a new reimbursement system designed to handle dramatic, breakthrough drugs. As Kramer says, “We need a better system to identify drugs that offer dramatic improvements in clinical care.”
In today's podcast episode, law professor Gaia Bernstein talks about the challenges of keeping control over our thoughts and actions, even when some powerful forces are pushing in the other direction.
Each afternoon, kids walk through my neighborhood, on their way back home from school, and almost all of them are walking alone, staring down at their phones. It's a troubling site. This daily parade of the zombie children just can’t bode well for the future.
That’s one reason I felt like Gaia Bernstein’s new book was talking directly to me. A law professor at Seton Hall, Gaia makes a strong argument that people are so addicted to tech at this point, we need some big, system level changes to social media platforms and other addictive technologies, instead of just blaming the individual and expecting them to fix these issues.
Gaia’s book is called Unwired: Gaining Control Over Addictive Technologies. It’s fascinating and I had a chance to talk with her about it for today’s podcast. At its heart, our conversation is really about how and whether we can maintain control over our thoughts and actions, even when some powerful forces are pushing in the other direction.
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We discuss the idea that, in certain situations, maybe it's not reasonable to expect that we’ll be able to enjoy personal freedom and autonomy. We also talk about how to be a good parent when it sometimes seems like our kids prefer to be raised by their iPads; so-called educational video games that actually don’t have anything to do with education; the root causes of tech addictions for people of all ages; and what kinds of changes we should be supporting.
Gaia is Seton’s Hall’s Technology, Privacy and Policy Professor of Law, as well as Co-Director of the Institute for Privacy Protection, and Co-Director of the Gibbons Institute of Law Science and Technology. She’s the founding director of the Institute for Privacy Protection. She created and spearheaded the Institute’s nationally recognized Outreach Program, which educated parents and students about technology overuse and privacy.
Professor Bernstein's scholarship has been published in leading law reviews including the law reviews of Vanderbilt, Boston College, Boston University, and U.C. Davis. Her work has been selected to the Stanford-Yale Junior Faculty Forum and received extensive media coverage. Gaia joined Seton Hall's faculty in 2004. Before that, she was a fellow at the Engelberg Center of Innovation Law & Policy and at the Information Law Institute of the New York University School of Law. She holds a J.S.D. from the New York University School of Law, an LL.M. from Harvard Law School, and a J.D. from Boston University.
Gaia’s work on this topic is groundbreaking I hope you’ll listen to the conversation and then consider pre-ordering her new book. It comes out on March 28.
