In the age of social media, patients who test experimental treatments wield surprising clout.
The tweets and the selfies, the uploaded video clips, felt like a natural way for Jesi Stracham to record her halting progress as she fought to recover from a motorcycle accident that had left her paralyzed from the chest down.
She had no idea, as she tapped away at her iPhone from her hospital bed, what her bubbly posts would unleash.
The stock of a Cambridge-based biotech company would rise and fall with her updates. Investors would scrutinize Stracham’s words and pore over individual frames in her videos. Stracham herself would be subjected to uncomfortable questions from strangers: Could she control her bowels? What about her bladder? Was she faking the small gains in movement she chronicled online? Other strangers would help her raise about $40,000 online to cover her medical bills — and, most unexpectedly, her posts would lead her to love.
This wasn’t the first time a patient had taken to social media, of course. Parents of terminally ill children have staged massive Twitter and Facebook campaigns to demand access to experimental drugs. They’ve rallied online for lower prices and faster approval of new therapies.
But Stracham’s upbeat posts pushed into new territory, raising unsettling questions about the integrity of clinical trials and the power of patients to move the market in the age of social media. “Whoop Whoop moving this process along!!” she wrote in March. “Oh you know just taking some small steps today!” she captioned a video of herself moving with the support of a physical therapist in May.
Stracham, a 23-year-old orthodontist’s assistant from North Carolina, is just the second patient in the world to try an experimental device that is implanted in an injured spinal cord in hopes of preserving functioning nerve cells and improving recovery from paralysis. She’s part of a small clinical trial sponsored by InVivo Therapeutics, which hopes to bring the device to market. Such trials are typically conducted quietly, with the only updates coming in cautiously worded press releases from the company.
Stracham, however, felt no such constraints. She outed herself as Patient No. 2 on social media days after her accident in January. So did Patient No. 1: Jordan Fallis, 26, an Arizona gear machinist who was paralyzed from the waist down in a dirt biking accident last October. And once they went online, they stayed public, using Twitter, Facebook, Instagram, YouTube, Vimeo, and GoFundMe to chronicle their triumphs and setbacks.
The ripple effects were huge: Here were the first two patients in a crucial clinical trial delivering real-time news on how an experimental product appeared to be working, long before the company announced results or the Food and Drug Administration analyzed them. Individual investors who had bet on InVivo stock suddenly had a trove of information linked to the first product the company hoped to bring to market.
In March, for instance, Stracham wrote on her GoFundMe page: “I moved my leg on my own! They say my hip flexors are reactivating!”, followed by a video a few days later documenting her leg movement. The initial news catalyzed a frenzy of online discussion among investors — and coincided with a 14 percent one-day jump in the company’s stock price.
Like the stock of many other biotechs, InVivo’s is volatile. It has climbed or fallen at least 5 percent on more than three dozen days this year. Company executives say it’s not clear the patients’ social media posts had any direct impact on the stock price, which is up about five-fold since the clinical trial began last October. But financial analysts see a clear connection; Andrew Fein, an analyst who follows InVivo for H.C. Wainwright & Co., calls it “the perfect storm of social media interplay with share price.”
A YouTube video of Fallis taking tentative first steps in a walker, for instance, sent investors abuzz and appeared to help boost the stock 11 percent over two days.
Conversely, when investors doubt what they’re seeing on social media, the stock can plummet. Confused investors turned to online message boards in April to parse a Boston Business Journal report that Stracham had “no significant medical change in her paralysis.” They struggled to make sense of that in light of the encouraging signs they’d seen in her online videos and read in her posts. By closing time the next day, the stock had dropped more than 17 percent.
Jason Napodano, an independent biotech analyst who previously followed the company for Zacks Investment Research, has watched with fascination. “Patients scooping companies on clinical trial data,” he said, “is a new frontier.”
Stracham never set out to upend InVivo’s clinical trial. In fact, she didn’t even sign up for it. Her parents enrolled her while she was sedated in the first days after her accident.
She only learned after she woke up in a hospital bed in Charlotte, N.C., that doctors had implanted into her damaged spinal cord a small, porous, biodegradable cylinder that the company calls a neuro-spinal scaffold. The device is designed to reduce damage by providing a physical substrate for viable nerve cells to cling onto and grow through, the way soil provides support for the tendrils of a growing seed.
Co-invented by biotech entrepreneur and Massachusetts Institute of Technology professor Robert Langer, the spinal scaffold proved promising in animal tests, with injured monkeys who got the scaffold showing greater improvement in motor performance than those who didn’t get the device. The ongoing human trial is designed to test its safety in five patients with a specific type of injury in which the spinal cord is damaged by a forceful impact, causing complete paralysis.
If approved by the FDA, the InVivo device could help the 3,750 US patients who suffer such injuries each year, and it could generate $200 million to $600 million in annual sales, the company projects. Those numbers could grow significantly if the company can adapt the device for less severe and less recent injuries. (It’s now being tested only in cases when it can be implanted immediately after the trauma.)
To Stracham, InVivo’s aspirations sounded like hope — for herself and others like her. A week after she woke up, still in the hospital, she pulled up the Charles Schwab app on her iPhone and bought the equivalent of what’s now (after a stock split) 110 shares of InVivo stock, at about $8 a share. “I was like, it’s in my body, I believe in it, so I’m buying stock in it,” she recalled.
Hoping to inspire other patients, she began posting about her recovery: One Instagram video shows Stracham practicing breathing with a device to help clear her lungs; in a photo, she smiles with visiting co-workers, her dark hair resting on her propped-up hospital pillow.
Two thousand miles away, near Phoenix, Fallis, an easygoing young man with closely cropped brown hair, was already sharing his progress in rehab online in the hope of raising awareness — and beginning to attract attention from InVivo investors.
Eager to swap stories with the only other person who’d had the same surgery, Stracham reached out to Fallis. “I really want to get in contact with Jordan. Please help me,” she wrote on his GoFundMe page. “I am lucky number 2 to get this done in the world.”
With that, she inadvertently alerted investors who were already following Fallis that they had someone new to watch.
She also opened a new chapter in her own life.
Soon after Stracham and Fallis connected, they began holding video chats. They found they had much more in common than the tiny devices implanted in their spines. Both loved extreme sports. And both had an intense determination to walk again, with Stracham’s exuberance complementing Fallis’s more subdued resolve.
When Stracham managed to move her leg again for the first time, Fallis was there with her (on the glowing screen of her iPad) to share the moment. In April, they both flew to Boston to attend a fund-raiser and watch the Boston Marathon, a whirlwind few days during which they shared a first kiss.
Their romance has drawn attention, including a segment on the “Today” show in which Fallis and Stracham shared another quick kiss and teased each other about who was going to walk first. But viewers had no idea of the personal and corporate drama behind the sweet story.
Fallis has received e-mails from strangers asking about his sexual function. The questions about her bowel and bladder control upset Stracham so much, she unfriended most of the hundreds of new Facebook connections she’d made since the accident and tightened her privacy settings. She also defended herself against hostile comments suggesting she’s manipulating trial results. On a Yahoo Finance message board popular with InVivo investors, one commenter harshly called her “a scared girl who claims that ‘she is improving.’ ”
Napodano, the biotech analyst who’s also an InVivo investor, said he’s confident both Stracham and Fallis are honest about their progress and well-intentioned.
But watching how closely investors monitor their posts — and how InVivo stock appears to have fluctuated in response — makes him “nervous as hell,” he said: “Nothing’s stopping Patient 4 or 5 from enrolling in the trial and buying a bunch of stock and then tweeting a bunch of BS about how they’re recovering” in hopes of boosting the share price.
Indeed, the FDA has focused on regulating the use of social media by companies, not patients. Eric J. Pahon, an agency spokesman, said it is aware of cases where trial participants may have communicated with one another “and understands the potential impact that may have on the conduct of the trial.” But the FDA has not issued any guidance to patients.
As a practical matter, outside experts say, it would be almost impossible to regulate postings by the thousands of people who participate in clinical trials each year — not to mention legally challenging, given their right to free speech.
As he watched the online interest spike, InVivo CEO Mark Perrin said he developed a mantra: “Don’t fight it.”
The company has fielded calls from investors asking how to interpret what they’re seeing online. It has hired a former journalist to track Stracham’s and Fallis’s posts and summarize the online chatter.
The posts have even affected the trial itself. After noticing apparent progress in the patients’ online videos, the company has asked doctors who conduct the patients’ check-ups to examine muscles that might not normally be checked.
For their part, Stracham and Fallis have tried to focus on recovery. They’ve been flying across the country to see one another, though, inevitably, they spend much of the time they have together doing rehabilitation exercises. One video posted recently online shows Stracham breathing heavily as she catches and tosses a weighted exercise ball. “If you want, we could throw something lighter,” Fallis suggests.
Stracham doesn’t skip a beat. “No,” she responds without hesitation, her gaze focused on the next incoming throw.
Interspersed with posts about therapy are the type of snapshots any young couple might post — dinners out, poolside selfies, wide smiles from the finish line of the Boston Marathon — sometimes appended with the hashtag #temporarily paralyzed.
Stracham tries not to think too much about the investors watching her online.
“It’s a bittersweet thing, that the information’s out there,” Stracham said. “If I can help a spinal cord injury patient learn something new, that’s awesome. But at the same time, it’s like, gosh, do I really want that out there?”
It’s too early to tell if the spinal scaffold works, or if the apparent progress the patients are seeing can be attributed to it. In the first month after his accident, Fallis’s injury improved by two points on a five-point scale used to classify the severity of spinal cord injuries — speedy progress achieved by less than 5 percent of patients with that type of injury, according to the company. Stracham’s injury remains in the most severe classification, but she’s regaining sensation and movement, and is working on crawling.
In the end, the data from Stracham and Fallis are unlikely to make or break InVivo, which must test the scaffold device in many more patients over the next few years before the FDA will consider approving the product. But that’s unlikely to stop investors from scouring the Internet for clues.
Patient No. 3, who enrolled in the trial in June, hasn’t identified himself. The company says he’s not interested in social media. But the study continues.
On Thursday, InVivo announced the experimental spinal scaffold had been implanted in Patient No. 4.
By Rebecca Robbins | STAT
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