They received retinal implants to restore their vision. Then the company turned its back on them.
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.
Jan Doerr
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.
Nanda Perk
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.
The Friday Five: Artificial DNA Could Give Cancer the Hook
The Friday Five covers five stories in research that you may have missed this week. There are plenty of controversies and troubling ethical issues in science – and we get into many of them in our online magazine – but this news roundup focuses on scientific creativity and progress to give you a therapeutic dose of inspiration headed into the weekend.
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Here are the promising studies covered in this week's Friday Five:
- Artificial DNA gives cancer the hook
- This daily practice could improve relationships
- Can social media handle the truth?
- Injecting a gel could speed up recovery
- A blood pressure medicine for a long healthy life
9 Tips for Online Mental Health Therapy
Telehealth offers a vast improvement in access and convenience to all sorts of medical services, and online therapy for mental health is one of the most promising case studies for telehealth. With many online therapy options available, you can choose whatever works best for you. Yet many people are hesitant about using online therapy. Even if they do give it a try, they often don’t know how to make the most effective use of this treatment modality.
Why do so many feel uncertain about online therapy? A major reason stems from its novelty. Humans are creatures of habit, prone to falling for what behavioral scientists like myself call the status quo bias, a predisposition to stick to traditional practices and behaviors. Many people reject innovative solutions even when they would be helpful. Thus, while teletherapy was available long before the pandemic, and might have fit the needs of many potential clients, relatively few took advantage of this option.
Even when we do try new methodologies, we often don’t do so effectively, because we cling to the same approaches that worked in previous situations. Scientists call this behavior functional fixedness. It’s kind of like the saying about the hammer-nail syndrome: “when you have a hammer, everything looks like a nail.”
These two mental blindspots, the status quo bias and functional fixedness, impact decision making in many areas of life. Fortunately, recent research has shown effective and pragmatic strategies to defeat these dangerous errors in judgment. The nine tips below will help you make the best decisions to get effective online therapy, based on the latest research.
Trust the science of online therapy
Extensive research shows that, for most patients, online therapy offers the same benefits as in-person therapy.
For instance, a 2014 study in the Journal of Affective Disorders reported that online treatment proved just as effective as face-to-face treatment for depression. A 2018 study, published in Journal of Psychological Disorders, found that online cognitive behavioral therapy, or CBT, was just as effective as face-to-face treatment for major depression, panic disorder, social anxiety disorder, and generalized anxiety disorder. And a 2014 study in Behaviour Research and Therapy discovered that online CBT proved effective in treating anxiety disorders, and helped lower costs of treatment.
During the forced teletherapy of COVID, therapists worried that those with serious mental health conditions would be less likely to convert to teletherapy. Yet research published in Counselling Psychology Quarterly has helped to alleviate that concern. It found that those with schizophrenia, bipolar disorder, severe depression, PTSD, and even suicidality converted to teletherapy at about the same rate as those with less severe mental health challenges.
Yet teletherapy may not be for everyone. For example, adolescents had the most varied response to teletherapy, according to a 2020 study in Family Process. Some adapted quickly and easily, while others found it awkward and anxiety-inducing. On the whole, children with trauma respond worse to online therapy, per a 2020 study in Child Abuse & Neglect. The treatment of mental health issues can sometimes require in-person interactions, such as the use of eye movement desensitization and reprocessing to treat post-traumatic stress disorder. And according to a 2020 study from the Journal of Humanistic Psychology, online therapy may not be as effective for those suffering from loneliness.
Leverage the strengths of online therapy
Online therapy is much more accessible than in-person therapy for those with a decent internet connection, webcam, mic, and digital skills. You don’t have to commute to your therapist’s office, wasting money and time. You can take much less medical leave from work, saving you money and hassle with your boss. If you live in a sparsely populated area, online therapy could allow you to access many specialized kinds of therapy that isn’t accessible locally.
Online options are much quicker compared to the long waiting lines for in-person therapy. You also have much more convenient scheduling options. And you won’t have to worry about running into someone you know in the waiting room. Online therapy is easier to conceal from others and reduces stigma. Many patients may feel more comfortable and open to sharing in the privacy and comfort of their own home.
You can use a variety of communication tools suited to your needs at any given time. Video can be used to start a relationship with a therapist and have more intense and nuanced discussions, but can be draining, especially for those with social anxiety. Voice-only may work well for less intense discussions. Email offers a useful option for long-form, well-thought-out messages. Texting is useful for quick, real-time questions, answers, and reinforcement.
Plus, online therapy is often cheaper than in-person therapy. In the midst of COVID, many insurance providers have decided to cover online therapy.
Address the weaknesses
One weakness is the requirement for appropriate technology and skills to engage in online therapy. Another is the difficulty of forming a close therapeutic relationship with your therapist. You won’t be able to communicate non-verbals as fully and the therapist will not be able to read you as well, requiring you to be more deliberate in how you express yourself.
Another important issue is that online therapy is subject to less government oversight compared to the in-person approach, which is regulated in each state, providing a baseline of quality control. As a result, you have to do more research on the providers that offer online therapy to make sure they’re reputable, use only licensed therapists, and have a clear and transparent pay structure.
Be intentional about advocating for yourself
Figure out what kind of goals you want to achieve. Consider how, within the context of your goals, you can leverage the benefits of online therapy while addressing the weaknesses. Write down and commit to achieving your goals. Remember, you need to be your own advocate, especially in the less regulated space of online therapy, so focus on being proactive in achieving your goals.
Develop your Hero’s Journey
Because online therapy can occur at various times of day through videos calls, emails and text, it might feel more open-ended and less organized, which can have advantages and disadvantages. One way you can give it more structure is to ground these interactions in the story of your self-improvement. Our minds perceive the world through narratives. Create a story of how you’ll get from where you are to where you want to go, meaning your goals.
A good template to use is the Hero’s Journey. Start the narrative with where you are, and what caused you to seek therapy. Write about the obstacles you will need to overcome, and the kind of help from a therapist that you’ll need in the process. Then, describe the final end state: how will you be better off after this journey, including what you will have learned.
Especially in online therapy, you need to be on top of things. Too many people let the therapist manage the treatment plan. As you pursue your hero’s journey, another way to organize for success is to take notes on your progress, and reevaluate how you’re doing every month with your therapist.
Identify your ideal mentor
Since it’s more difficult to be confident about the quality of service providers in an online setting, you should identify in advance the traits of your desired therapist. Every Hero’s Journey involves a mentor figure who guides the protagonist through this journey. So who’s your ideal mentor? Write out their top 10 characteristics, from most to least important.
For example, you might want someone who is:
- Empathetic
- Caring
- Good listener
- Logical
- Direct
- Questioning
- Non-judgmental
- Organized
- Curious
- Flexible
That’s my list. Depending on what challenge you’re facing and your personality and preferences, you should make your own. Then, when you are matched with a therapist, evaluate how well they fit your ideal list.
Fail fast
When you first match with a therapist, try to fail fast. That means, instead of focusing on getting treatment, focus on figuring out if the therapist is a good match based on the traits you identified above. That will enable you to move on quickly if they’re not, and it’s very much worth it to figure that out early.
Tell them your goals, your story, and your vision of your ideal mentor. Ask them whether they think they are a match, and what kind of a treatment plan they would suggest based on the information you provided. And observe them yourself in your initial interactions, focusing on whether they’re a good match. Often, you’ll find that your initial vision of your ideal mentor is incomplete, and you’ll learn through doing therapy what kind of a therapist is the best fit for you.
Choose a small but meaningful subgoal to work on first
This small subgoal should be sufficient to be meaningful and impactful for improving your mental health, but not a big stretch for you to achieve. This subgoal should be a tool for you to use to evaluate whether the therapist is indeed a good fit for you. It will also help you evaluate whether the treatment plan makes sense, or whether it needs to be revised.
Know when to wrap things up
As you approach the end of your planned work and you see you’re reaching your goals, talk to the therapist about how to wrap up rather than letting things drag on for too long. You don’t want to become dependent on therapy: it’s meant to be a temporary intervention. Some less scrupulous therapists will insist that therapy should never end and we should all stay in therapy forever, and you want to avoid falling for this line. When you reach your goals, end your therapy, unless you discover a serious new reason to continue it. Still, it may be wise to set up occasional check-ins once every three to six months to make sure you’re staying on the right track.