Often called the window to the soul, the eyes are more sacred than other body parts, at least for some.
Eye transplants are desperately needed, but they're nowhere in sight. About 12.7 million people worldwide need a corneal transplant, which means that only one in 70 people who require them, get them. The gaps are international. Eye banks in the United Kingdom are around 20 percent below the level needed to supply hospitals, while Indian eye banks, which need at least 250,000 corneas per year, collect only around 45 to 50 thousand donor corneas (and of those 60 to 70 percent are successfully transplanted).
As for retinas, it's impossible currently to put one into the eye of another person. Artificial devices can be implanted to restore the sight of patients suffering from severe retinal diseases, but the number of people around the world with such “bionic eyes” is less than 600, while in America alone 11 million people have some type of retinal disease leading to severe vision loss. Add to this an increasingly aging population, commonly facing various vision impairments, and you have a recipe for heavy burdens on individuals, the economy and society. In the U.S. alone, the total annual economic impact of vision problems was $51.4 billion in 2017.
Even if you try growing tissues in the petri dish route into organoids mimicking the function of the human eye, you will not get the physiological complexity of the structure and metabolism of the real thing, according to Cosma. She is a member of a scientific consortium that includes researchers from major institutions from Spain, the U.K., Portugal, Italy and Israel. The consortium has received about $3.8 million from the European Union to pursue innovative eye research. Her team’s goal is to give hope to at least 2.2 billion people across the world afflicted with a vision impairment and 33 million who go through life with avoidable blindness.
Their method? Resuscitating cadaveric eyes for at least a month.
If we succeed, it will be the first intact human model of the eye capable of exploring and analyzing regenerative processes ex vivo. -- Maria Pia Cosma.
“We proposed to resuscitate eyes, that is to restore the global physiology and function of human explanted tissues,” Cosma said, referring to living tissues extracted from the eye and placed in a medium for culture. Their ECaBox is an ex vivo biological system, in which eyes taken from dead donors are placed in an artificial environment, designed to preserve the eye’s temperature and pH levels, deter blood clots, and remove the metabolic waste and toxins that would otherwise spell their demise.
Scientists work on resuscitating eyes in the lab of Maria Pia Cosma.
Courtesy of Maria Pia Cosma.
“One of the great challenges is the passage of the blood in the capillary branches of the eye, what we call long-term perfusion,” Cosma said. Capillaries are an intricate network of very thin blood vessels that transport blood, nutrients and oxygen to cells in the body’s organs and systems. To maintain the garland-shaped structure of this network, sufficient amounts of oxygen and nutrients must be provided through the eye circulation and microcirculation. “Our ambition is to combine perfusion of the vessels with artificial blood," along with using a synthetic form of vitreous, or the gel-like fluid that lets in light and supports the the eye's round shape, Cosma said.
The scientists use this novel setup with the eye submersed in its medium to keep the organ viable, so they can test retinal function. “If we succeed, we will ensure full functionality of a human organ ex vivo. It will be the first intact human model of the eye capable of exploring and analyzing regenerative processes ex vivo,” Cosma added.
A rapidly developing field of regenerative medicine aims to stimulate the body's natural healing processes and restore or replace damaged tissues and organs. But for people with retinal diseases, regenerative medicine progress has been painfully slow. “Experiments on rodents show progress, but the risks for humans are unacceptable,” Cosma said.
The ECaBox could boost progress with regenerative medicine for people with retinal diseases, which has been painfully slow because human experiments involving their eyes are too risky. “We will test emerging treatments while reducing animal research, and greatly accelerate the discovery and preclinical research phase of new possible treatments for vision loss at significantly reduced costs,” Cosma explained. Much less time and money would be wasted during the drug discovery process. Their work may even make it possible to transplant the entire eyeball for those who need it.
“It is a very exciting project,” said Sanjay Sharma, a professor of ophthalmology and epidemiology at Queen's University, in Kingston, Canada. “The ability to explore and monitor regenerative interventions will increasingly be of importance as we develop therapies that can regenerate ocular tissues, including the retina.”
Seemingly, there's no sacred religious text or a holy book prohibiting the practice of eye donation.
But is the world ready for eye transplants? “People are a bit weird or very emotional about donating their eyes as compared to other organs,” Cosma said. And much can be said about the problem of eye donor shortage. Concerns include disfigurement and healthcare professionals’ fear that the conversation about eye donation will upset the departed person’s relatives because of cultural or religious considerations. As just one example, Sharma noted the paucity of eye donations in his home country, Canada.
Yet, experts like Sharma stress the importance of these donations for both the recipients and their family members. “It allows them some psychological benefit in a very difficult time,” he said. So why are global eye banks suffering? Is it because the eyes are the windows to the soul?
Seemingly, there's no sacred religious text or a holy book prohibiting the practice of eye donation. In fact, most major religions of the world permit and support organ transplantation and donation, and by extension eye donation, because they unequivocally see it as an “act of neighborly love and charity.” In Hinduism, the concept of eye donation aligns with the Hindu principle of daan or selfless giving, where individuals donate their organs or body after death to benefit others and contribute to society. In Islam, eye donation is a form of sadaqah jariyah, a perpetual charity, as it can continue to benefit others even after the donor's death.
Meanwhile, Buddhist masters teach that donating an organ gives another person the chance to live longer and practice dharma, the universal law and order, more meaningfully; they also dismiss misunderstandings of the type “if you donate an eye, you’ll be born without an eye in the next birth.” And Christian teachings emphasize the values of love, compassion, and selflessness, all compatible with organ donation, eye donation notwithstanding; besides, those that will have a house in heaven, will get a whole new body without imperfections and limitations.
The explanation for people’s resistance may lie in what Deepak Sarma, a professor of Indian religions and philosophy at Case Western Reserve University in Cleveland, calls “street interpretation” of religious or spiritual dogmas. Consider the mechanism of karma, which is about the causal relation between previous and current actions. “Maybe some Hindus believe there is karma in the eyes and, if the eye gets transplanted into another person, they will have to have that karmic card from now on,” Sarma said. “Even if there is peculiar karma due to an untimely death–which might be interpreted by some as bad karma–then you have the karma of the recipient, which is tremendously good karma, because they have access to these body parts, a tremendous gift,” Sarma said. The overall accumulation is that of good karma: “It’s a beautiful kind of balance,” Sarma said.
For the Jews, Christians, and Muslims who believe in the physical resurrection of the body that will be made new in an afterlife, the already existing body is sacred since it will be the basis of a new refashioned body in an afterlife.---Omar Sultan Haque.
With that said, Sarma believes it is a fallacy to personify or anthropomorphize the eye, which doesn’t have a soul, and stresses that the karma attaches itself to the soul and not the body parts. But for scholars like Omar Sultan Haque—a psychiatrist and social scientist at Harvard Medical School, investigating questions across global health, anthropology, social psychology, and bioethics—the hierarchy of sacredness of body parts is entrenched in human psychology. You cannot equate the pinky toe with the face, he explained.
“The eyes are the window to the soul,” Haque said. “People have a hierarchy of body parts that are considered more sacred or essential to the self or soul, such as the eyes, face, and brain.” In his view, the techno-utopian transhumanist communities (especially those in Silicon Valley) have reduced the totality of a person to a mere material object, a “wet robot” that knows no sacredness or hierarchy of human body parts. “But for the Jews, Christians, and Muslims who believe in the physical resurrection of the body that will be made new in an afterlife, the [already existing] body is sacred since it will be the basis of a new refashioned body in an afterlife,” Haque said. “You cannot treat the body like any old material artifact, or old chair or ragged cloth, just because materialistic, secular ideologies want so,” he continued.
For Cosma and her peers, however, the very definition of what is alive or not is a bit semantic. “As soon as we die, the electrophysiological activity in the eye stops,” she said. “The goal of the project is to restore this activity as soon as possible before the highly complex tissue of the eye starts degrading.” Cosma’s group doesn’t yet know when they will be able to keep the eyes alive and well in the ECaBox, but the consensus is that the sooner the better. Hopefully, the taboos and fears around the eye donations will dissipate around the same time.
A patient getting examined at health startup Forward.
What if going to the doctor's office could be … nice?
If you didn't have to wait for your appointment, but were ushered right in; if your medical data was all collated and easily searchable on an iPhone app; if a remote scribe took notes while you spoke with your doctor so you could make eye contact with them; if your doctor didn't seem horribly rushed.
Would you go to the doctor to get help staying healthy, rather than just to stop being sick?
Would that change the way you thought about your health? Would you go to the doctor to get help staying healthy, rather than just to stop being sick? And would that, in the long run, be much better for you?
Those are the animating questions for Forward, a healthcare startup devoted to preventive care. Led by founder Adrian Aoun, formerly of Google/Sidewalk labs, Forward opened its first office in San Francisco in 2016 and has since expanded to Los Angeles, Orange County, New York, and Washington, D.C., with a San Diego location opening soon.
It's been described as the "Apple Store of doctor's offices," which in some ways is a reaction to Forward's vibe: Patients have described the offices as having blonde wood, minimalist design, sparkling water on tap — and lots of high-tech gadgets, like the full-body scanner that replaces the standard scale and stethoscope.
The interior of a Forward office.
(Courtesy Forward)
The more crucial difference, though, is its model of care. Forward doesn't take insurance. Instead, patients, or "members," pay a flat $149 per month, along the lines of a subscription service like Netflix or a gym membership. That fee covers visits, messaging with medical staff through the Forward app, the use of a wearable (like a Fitbit or a sleep tracker) if the physician recommends it, plus any bloodwork or diagnostic tests run in the on-site labs. (The company declined to disclose how many people have signed up for memberships.)
Predictability is Forward's other significant, distinguishing feature: No surprise co-pays, or extra charges showing up on a billing statement months later. Everything is wrapped up in the $149 membership fee, unless the physician recommends visiting an outside specialist.
That caveat isn't a small one. It's important to note that Forward is in no way meant to replace standard health insurance. The service is strictly focused on preventive care, so it wouldn't be much use in case of an emergency; it's meant to help people, as far as is possible, avoid that emergency at all.
Ani Okkasian's family recently went through such an emergency. Her 62-year-old father, an active and seemingly healthy man living with diabetes, had been feeling unwell for a while, but struggled to receive constructive follow-up or tests from his doctor. It finally emerged that his liver was severely damaged, and he suffered a stroke — the risk of which can be elevated by liver disease. He seemed to deteriorate completely within mere weeks, Okkasian said, and in January he passed away.
"He was someone who'd go to the doctor regularly and listen to what they said and follow it," Okkasian said. "I shouldn't have had to bury my father at 62. I still believe to my core that his death could have been avoided if the primary care was adequate."
"I could tell that the people who designed [Forward] had lost someone to the legacy system; it was so streamlined and so much clearer."
Okkasian began researching, looking for a better alternative, and discovered Forward. Founder Aoun lost his grandfather to a heart attack; his brother's heart attack at age 31 was the impetus to start Forward.
"I could tell that that was the genesis," Okkasian said. "Having just lost someone, and having had to deal with different aspects of the healthcare industry — how complicated and convoluted that all is — I could tell that the people who designed [Forward] had lost someone to the legacy system; it was so streamlined and so much clearer."
So Who Is Forward For?
The Affordable Care Act mandates that evidence-based preventive care must be covered by insurers without any cost to the patient. Today, 30 million Americans are still living without health insurance; but for most of the population, cost shouldn't prevent access to standard, preventive care, says Benjamin Sommers, a physician and professor at the Harvard T.H. Chan School of Public Health who has studied the effect of the ACA on preventive care access.
For Okkasian and her family, it wasn't a lack of access to primary care that was at issue; it was the quality of that primary care. In 2019, that's probably true for a lot of people.
"How come all other industries have been disturbed except the medical industry?" Okkasian asked. "It's disturbing the most people. We're so advanced in so many ways, but when it comes to the healthcare system, we're not prioritizing the wellness of a person."
Is Forward the answer? Well, probably not for everyone. Its office are only in a handful of cities, and there are limits to how scalable it would be; it's unavoidable that the $149 per month charge restricts access for a lot of people. Those who have insurance through their employer might have a flexible spending account (FSA) that would cover some or all of the membership fee, and Forward has said that 15 percent of their early members came from underserved communities and were offered free plans; but for many others, that's just an unworkable extra cost.
Sommers also sounded a dubious note about a maximalist attitude toward data collection.
"Even though some patients may think that 'more is always better' — more testing, more screening, etc. — this isn't true," he said. "Some types of cancer screening, ovarian cancer screening for instance, are actually harmful or of no benefit, because studies have shown that they don't improve survival or health outcomes, but can lead to unnecessary testing, pain, false positives, anxiety, and other side effects.
"It's really great for people who are in good health, looking to make it better."
"I'm generally skeptical of efforts to charge people more to get 'extra testing' that isn't currently supported by the medical evidence," he added.
But relatively healthy people who want to take a more active approach to their health — or people who have frequent testing needs, like those using the HIV-prevention drug PrEP, and want to avoid co-pays — might benefit from the on-demand, low-friction experience that Forward offers.
"It's really great for people who are in good health, looking to make it better," Okkasian said. "Your experience is simplified to a point where you feel empowered, not scared."
