Matt Fuchs is the editor-in-chief of Leaps.org. He is also a contributing reporter to the Washington Post and has written for the New York Times, Time Magazine, WIRED and the Washington Post Magazine, among other outlets. Follow him on Twitter @fuchswriter.
Since March, 35 patients in the care of Dr. Gregory Jicha, a neurologist at the University of Kentucky, have died of Alzheimer's disease or related dementia.
Meanwhile, with 233 active clinical trials underway to find treatments, Jicha wonders why mainstream media outlets don't do more to highlight potential solutions to the physical, emotional and economic devastation of these diseases. "Unfortunately, it's not until we're right at the cusp of a major discovery that anybody pays attention to these very promising agents," he says.
Heightened awareness would bring more resources for faster progress, according to Jicha. Otherwise, he's concerned that current research pipelines will take over a decade.
In recent years, newspapers with national readerships have devoted more technology reporting to key developments in social media, artificial intelligence, wired gadgets and telecom. Less prominent has been news about biotech—innovations based on biology research—and new medicines emerging from this technology. That's the impression of Jicha as well as Craig Lipset, former head of clinical innovation at Pfizer. "Scientists and clinicians are entirely invested [in biotech], yet no one talks about their discoveries," he says.
With the popular press rightly focusing on progress with a vaccine for COVID-19 this year, notable developments in biomarkers, Alzheimer's and cancer research, gene therapies for cystic fibrosis, and therapeutics related to biological age may be going unreported. Jennifer Goldsack, Executive Director of the nonprofit Digital Medicine Society, is confused over the media's soft touch with biotech. "I'm genuinely interested in understanding what editors of technology sections think the public wants to be reading."
The Numbers on Media Coverage
A newspaper's health section is a sensible fit for biotech reporting. In 2020, these departments have concentrated largely on COVID-19—as they should—while sections on technology and science don't necessarily pick up on other biotech news. Emily Mullin, staff writer for the tech magazine OneZero, has observed a gap in newspaper coverage. "You have a lot of [niche outlets] reporting biotech on the business side for industry experts, and you have a lot of reporting heavily from the science side focused on [readers who are] scientists. But there aren't a lot of outlets doing more humanizing coverage of biotech."
Indeed, the volume of coverage by top-tier media outlets in the U.S. for non-COVID biotech has dropped 32 percent since the pandemic spiked in March, according to an analysis run for this article by Commetric, a company that looks at media reputation for clients in many sectors including biotech and artificial intelligence. Meanwhile, the volume of coverage for AI has held steady, up one percent.
Commetric's CEO, Magnus Hakansson, thinks important biotech stories were omitted from mainstream coverage even before the world fell into the grips of the virus. "Apart from COVID, it's been extremely difficult for biotech companies to push out their discoveries," he says. "People in biotech have to be quite creative when they want to communicate [progress in] different therapeutic areas, and that is a problem."
In mid-February, just before the pandemic dominated the news cycle, researchers used machine learning to find a powerful new antibiotic capable of killing strains of disease-causing bacteria that had previously resisted all known antibiotics. Science-focused outlets hailed the work as a breakthrough, but some nationally-read newspapers didn't mention it. "There is this very silent crisis around antibiotic resistance that no one is aware of," says Goldsack. "We could be 50 years away from not being able to give elective surgeries because we are at such a high risk of being unable to control infection."
Could mainstream media strike a better balance between cynicism toward biotech and hyping animal studies that probably won't ever benefit the humans reading about them?
What's to Gain from More Mainstream Biotech
A brighter public spotlight on biotech could result in greater support and faster progress with research, says Lipset. "One of the biggest delays in drug development is patient recruitment. Patients don't know about the opportunities," he said, because, "clinical research pipelines aren't talked about in the mainstream news." Only about eight percent of oncology patients participate.
The current focus on COVID-19, while warranted, could also be excluding lines of research that seem separate from the virus, but are actually relevant. In September, Nir Barzilai, director of the Institute of Aging Research at Albert Einstein College of Medicine, told me about eight different observational studies finding decreased COVID-19 severity among people taking a drug called metformin, which is believed to slow down the major hallmarks of biological aging, such as inflammation. Once a vaccine is approved and distributed, biologically older people could supplement it with metformin.
"Shining the spotlight on this research now could really be critical because COVID has shown what happens in older adults and how they're more at risk," says Jenna Bartley, a researcher of aging and immunology at the University of Connecticut, but she believes mainstream media sometimes miss stories on anti-aging therapies or portray them inaccurately.
The question remains why.
The Theranos Effect and Other Image Problems
Before the pandemic, Mullin, the biotech writer at OneZero, looked into a story for her editor about a company with a new test for infectious diseases. The company said its test, based on technology for editing genes, was fast, easy to use, and could be tailored to any pathogen. Mullin told her editor the evidence for the test's validity was impressive.
He wondered if readers would agree. "This is starting to sound like Theranos," he said.
The brainchild of entrepreneur Elizabeth Holmes, Theranos was valued at $9 billion in 2014. Time Magazine named Holmes one of its most influential people, and the blood-testing company was heavily covered by the media as a game changer for health outcomes—until Holmes was exposed by the Wall Street Journal as a fraud and criminally charged.
In the OneZero article, Mullin and her editor were careful to explain the gene-editing tech was legit, explicitly distinguishing it from Theranos. "I was like, yes—but this actually works! And they can show it works."
While the Holmes scandal explains some of the mistrust, it's part of a bigger pattern. The public's hopes for biotech have been frustrated repeatedly in recent decades, fostering a media mantra of fool me twice, shame on me. A recent report by Commetric noted that after the bursting of the biotech market bubble in the early 2000s, commentators grew deeply skeptical of the field. An additional source of caution may be the number of researchers in biotech with conflicts of interest such as patents or their own startups. "It's a landmine," Mullin said. "We're conditioned to think that scientists are out for the common good, but they have their own biases."
Yet another source of uncertainty: the long regulatory road and cost for new therapies to be approved by the FDA. The process can take 15 years and over a billion dollars; the percentage of drugs actually crossing the final strand of red tape is notoriously low.
"The only time stories have reached the news is when there's a sensational headline about the cure for cancer," said Lipset, "when, in fact it's about mice, and then things drop off." Meanwhile, consumer protection hurdles for some technologies, such as computer chips, are less onerous than the FDA gauntlet for new medicines. The media may view research breakthroughs in digital tech as more impactful because they're likelier to find their way into commercially available products.
And whereas a handful of digital innovations have been democratized for widespread consumption—96 percent of Americans now own a cell phone, and 72 percent use social media—journalists at nationally-read newspapers may see biotech as less attainable for the average reader. Sure, we're all aging, but will the healthcare system grant everyone fair access to treatments for slowing the aging process? Current disparities in healthcare sow reason for doubt.
And yet. Recall Lipset's point that more press coverage would drive greater participation in clinical trials, which could accelerate them and diversify participants. Could mainstream media strike a better balance between cynicism toward biotech and hyping animal studies that probably won't ever benefit the humans reading about them?
Biotech in a Post-COVID World
Imagine it's early 2022. Hopefully, much of the population is protected from the virus through some combination of vaccines, therapeutics, and herd immunity. We're starting to bounce back from the social and economic shocks of 2020. COVID-19 headlines recede from the front pages, then disappear altogether. Gradually, certain aspects of life pick up where they left off in 2019, while a few changes forced by the pandemic prove to be more lasting, some for the better.
Among its possible legacies, the virus could usher in a new era of biotech development and press coverage, with these two trends reinforcing each other. While government has mismanaged its response to the virus, the level of innovation, collaboration and investment in pandemic-related biotech has been compared to the Manhattan Project. "There's no question that vaccine acceleration is a success story," said Kevin Schulman, a professor of medicine and economics at Stanford. "We could use this experience to build new economic models to correct market failures. It could carry over to oncology or Alzheimer's."
As Winston Churchill said, never let a good crisis go to waste.
Lipset thinks the virus has primed us to pay attention, bringing biotech into the public's consciousness like never before. He's amazed at how many neighbors and old friends from high school are coming out of the woodwork to ask him how clinical trials work. "What happens next is interesting. Does this open a window of opportunity to get more content out? People's appetites have been whetted."
High-profile wins could help to sustain interest, such as deployment of rapid tests of COVID-19 to be taken at home, a version of which the FDA authorized on November 18th. The idea bears resemblance to the Theranos concept, also designed as a portable analysis, except this test met the FDA's requirements and has a legitimate chance of changing people's lives. Meanwhile, at least two vaccines are on track to gain government approval in record time. The unprecedented speed could be a catalyst for streamlining inefficiencies in the FDA's approval process in non-emergency situations.
Tests for COVID-19 represent what some view as the future of managing diseases: early detection. This paradigm may be more feasible—and deserving of journalistic ink—than research on diseases in advanced stages, says Azra Raza, professor of medicine at Columbia University. "Journalists have to challenge this conceit of thinking we can cure end-stage cancer," says Raza, author of The First Cell. Beyond animal studies and "exercise helps" articles, she thinks writers should focus on biotech for catching the earliest footprints of cancer when it's more treatable. "Not enough people appreciate the extent of this tragedy, but journalists can help us do it. COVID-19 is a great moment of truth telling."
Another pressing truth is the need for vaccination, as half of Americans have said they'll skip them due to concerns about safety and effectiveness. It's not the kind of stumbling block faced by iPhones or social media algorithms. AI stirs plenty of its own controversy, but the public's interest in learning about AI and engaging with it seems to grow regardless. "Who are the publicists doing such a good job for AI that biotechnology is lacking?" Lipset wonders.
The job description of those publicists, whoever they are, could be expanding. Scientists are increasingly using AI to measure the effects of new medicines that target diseases—including COVID-19—and the pathways of aging. Mullin noted the challenge of reporting breakthroughs in the life sciences in ways the public understands. With many newsrooms tightening budgets, fewer writers have science backgrounds, and "biotech is daunting for journalists," she says. "It's daunting for me and I work in this area." Now factor in the additional expertise required to understand biotech and AI. "I learned the ropes for how to read a biotech paper, but I have no idea how to read an AI paper."
Nevertheless, Mullin believes reporters have a duty to scrutinize whether this convergence of AI and biotech will foster better outcomes. "Is it just the shiny new tool we're employing because we can? Will algorithms help eliminate health disparities or contribute to them even more? We need to pay attention."
Jessica Ware is obsessed with bugs.
My guest today is a leading researcher on insects, the president of the Entomological Society of America and a curator at the American Museum of Natural History. Learn more about her here.
You may not think that insects and human health go hand-in-hand, but as Jessica makes clear, they’re closely related. A lot of people care about their health, and the health of other creatures on the planet, and the health of the planet itself, but researchers like Jessica are studying another thing we should be focusing on even more: how these seemingly separate areas are deeply entwined. (This is the theme of an upcoming event hosted by Leaps.org and the Aspen Institute.)
Listen to the Episode
Entomologist Jessica Ware
D. Finnin / AMNH
Maybe it feels like a core human instinct to demonize bugs as gross. We seem to try to eradicate them in every way possible, whether that’s with poison, or getting out our blood thirst by stomping them whenever they creep and crawl into sight.
But where did our fear of bugs really come from? Jessica makes a compelling case that a lot of it is cultural, rather than in-born, and we should be following the lead of other cultures that have learned to live with and appreciate bugs.
The truth is that a healthy planet depends on insects. You may feel stung by that news if you hate bugs. Reality bites.
Jessica and I talk about whether learning to live with insects should include eating them and gene editing them so they don’t transmit viruses. She also tells me about her important research into using genomic tools to track bugs in the wild to figure out why and how we’ve lost 50 percent of the insect population since 1970 according to some estimates – bad news because the ecosystems that make up the planet heavily depend on insects. Jessica is leading the way to better understand what’s causing these declines in order to start reversing these trends to save the insects and to save ourselves.
The first thing Jeroen Perk saw after he partially regained his sight nearly a decade ago was the outline of his guide dog Pedro.
“There was a white floor, and the dog was black,” recalls Perk, a 43-year-old investigator for the Dutch customs service. “I was crying. It was a very nice moment.”
Perk was diagnosed with retinitis pigmentosa as a child and had been blind since early adulthood. He has been able to use the implant placed into his retina in 2013 to help identify street crossings, and even ski and pursue archery. A video posted by the company that designed and manufactured the device indicates he’s a good shot.
Less black-and-white has been the journey Perk and others have been on after they were implanted with the Argus II, a second-generation device created by a Los Angeles-based company called Second Sight Medical Devices.
The Argus II uses the implant and a video camera embedded in a special pair of glasses to provide limited vision to those with retinitis pigmentosa, a genetic disease that causes cells in the retina to deteriorate. The camera feeds information to the implant, which sends electrical impulses into the retina to recapitulate what the camera sees. The impulses appear in the Argus II as a 60-pixel grid of blacks, grays and whites in the user’s eye that can render rough outlines of objects and their motion.
Smartphone and computer manufacturers typically stop issuing software upgrades to their devices after two or three years, eventually rendering them bricks. But is the smartphone approach acceptable for a device that helps restore the most crucial sense a human being possesses?
Ross Doerr, a retired disability rights attorney in Maine who received an Argus II in 2019, describes the field of vision as the equivalent of an index card held at arm’s length. Perk often brings objects close to his face to decipher them. Moreover, users must swivel their heads to take in visual data; moving their eyeballs does not work.
Despite its limitations, the Argus II beats the alternative. Perk no longer relies on his guide dog. Doerr was uplifted when he was able to see the outlines of Christmas trees at a holiday show.
“The fairy godmother department sort of reaches out and taps you on the shoulder once in a while,” Doerr says of his implant, which came about purely by chance. A surgeon treating his cataracts was partnered with the son of another surgeon who was implanting the devices, and he was referred.
Doerr had no reason to believe the shower of fairy dust wouldn’t continue. Second Sight held out promises that the Argus II recipients’ vision would gradually improve through upgrades to much higher pixel densities. The ability to recognize individual faces was even touted as a possibility. In the winter of 2020, Doerr was preparing to travel across the U.S. to Second Sight’s headquarters to receive an upgrade. But then COVID-19 descended, and the trip was canceled.
The pandemic also hit Second Sight’s bottom line. Doerr found out about its tribulations only from one of the company’s vision therapists, who told him the entire department was being laid off. Second Sight cut nearly 80% of its workforce in March 2020 and announced it would wind down operations.
Ross Doerr has mostly stopped using his Argus II, the result of combination of fear of losing its assistance from wear and tear and disdain for the company that brought it to market.
Second Sight’s implosion left some 350 Argus recipients in the metaphorical dark about what to do if their implants failed. Skeleton staff seem to have rarely responded to queries from their customers, at least based on the experiences of Perk and Doerr. And some recipients have unfortunately returned to the actual dark as well, as reports have surfaced of Argus II failures due to aging or worn-down parts.
Product support for complex products is remarkably uneven. Although the iconic Ford Mustang ceased production in the late 1960s, its parts market is so robust that it’s theoretically possible to assemble a new vehicle from recently crafted components. Conversely, smartphone and computer manufacturers typically stop issuing software upgrades to their devices after two or three years, eventually rendering them bricks. Consumers have accepted both extremes.
But is the smartphone approach acceptable for a device that helps restore the most crucial sense a human being possesses?
Margaret McLean, a senior fellow at the Markkula Center for Applied Ethics at Santa Clara University in California, notes companies like Second Sight have a greater obligation for product support than other consumer product ventures.
“In this particular case, you have a great deal of risk that is involved in using this device, the implant, and the after care of this device,” she says. “You cannot, like with your car, decide that ‘I don’t like my Mustang anymore,’ and go out and buy a Corvette.”
And, whether the Argus II implant works or not, its physical presence can impact critical medical decisions. Doerr’s doctor wanted him to undergo an MRI to assist in diagnosing attacks of vertigo. But the physician was concerned his implant might interfere. With the latest available manufacturer advisories on his implant nearly a decade old, the procedure was held up. Doerr spent months importuning Second Sight through phone calls, emails and Facebook postings to learn if his implant was contraindicated with MRIs, which he never received. Although the cause of his vertigo was found without an MRI, Doerr was hardly assured.
“Put that into context for a minute. I get into a serious car accident. I end up in the emergency room, and I have a tag saying I have an implanted medical device,” he says. “You can’t do an MRI until you get the proper information from the company. Who’s going to answer the phone?”
Second Sight’s management did answer the call to revamp its business. It netted nearly $78 million through a private stock placement and an initial public offering last year. At the end of 2021, Second Sight had nearly $70 million in cash on hand, according to a recent filing with the Securities and Exchange Commission.
And while the Argus II is still touted at length on Second Sight’s home page, it appears little of its corporate coffers are earmarked toward its support. These days, the company is focused on obtaining federal approvals for Orion, a new implant that would go directly into the recipient’s brain and could be used to remedy blindness from a variety of causes. It obtained a $6.4 million grant from the National Institutes of Health in May 2021 to help develop Orion.
Presented with a list of written questions by email, Second Sight’s spokesperson, Dave Gentry of the investor relations firm Red Chip Companies, copied a subordinate with an abrupt message to “please handle.” That was the only response from a company representative. A call to Second Sight acting chief executive officer Scott Dunbar went unreturned.
Whether or not the Orion succeeds remains to be seen. The company’s SEC filings suggest a viable and FDA-approved device is years away, and that operational losses are expected for the “foreseeable future.” Second Sight reported zero revenue in 2020 or 2021.
Moreover, the experiences of the Argus II recipients could color the reception of future Second Sight products. Doerr notes that his insurer paid nearly $500,000 to implant his device and for training on how to use it.
“What’s the insurance industry going to say the next time this crops up?” Doerr asks, noting that the company’s reputation is “completely shot” with the recipients of its implants.
Perk, who made speeches to praise the Argus II and is still featured in a video on the Second Sight website, says he also no longer supports the company.
Jeroen Perk, an investigator for the Dutch customs service, cried for joy after partially regaining his sight, but he no longer trusts Second Sight, the company that provided his implant.
Nevertheless, Perk remains highly reliant on the technology. When he dropped an external component of his device in late 2020 and it broke, Perk briefly debated whether to remain blind or find a way to get his Argus II working again. Three months later, he was able to revive it by crowdsourcing parts, primarily from surgeons with spare components or other Argus II recipients who no longer use their devices. Perk now has several spare parts in reserve in case of future breakdowns.
Despite the frantic efforts to retain what little sight he has, Perk has no regrets about having the device implanted. And while he no longer trusts Second Sight, he is looking forward to possibly obtaining more advanced implants from companies in the Netherlands and Australia working on their own products.
Doerr suggests that biotech firms whose implants are distributed globally be bound to some sort of international treaty requiring them to service their products in perpetuity. Such treaties are still applied to the salvage rights for ships that sunk centuries ago, he notes.
“I think that in a global tech economy, that would be a good thing,” says McLean, the fellow at Santa Clara, “but I am not optimistic about it in the near term. Business incentives push toward return on share to stockholders, not to patients and other stakeholders. We likely need to rely on some combination of corporately responsibility…and [international] government regulation. It’s tough—the Paris Climate Accord implementation at a slow walk comes to mind.”
Unlike Perk, Doerr has mostly stopped using his Argus II, the result of combination of fear of losing its assistance from wear and tear and disdain for the company that brought it to market. At 70, Doerr says he does not have the time or energy to hold the company more accountable. And with Second Sight having gone through a considerable corporate reorganization, Doerr believes a lawsuit to compel it to better serve its Argus recipients would be nothing but an extremely costly longshot.
“It’s corporate America at its best,” he observes.