The Speed of Science

We live in a world that likes simple, straightforward answers.

“Who won the [insert any sport here] game?”

–“This team won, and the other team lost.”

But the more complex the question, the harder this type of zero-sum response can be.

And when it comes to the question of “When will there be a cure for hearing loss?,” at this point, there’s no easy answer—which doesn’t really square away with our desire for clickbait-worthy headlines (“Scientists CURE DEAFNESS!”) and assertions that are 140 characters or less, including hashtags (“Did you go to too many rock concerts? Now hear this! #hearinglosscure”).

To understand why a cure for hearing loss has been elusive so far, it helps to understand the scientific process. “Science moves incrementally at some level, but the reality is, leaps happen randomly,” says Dr. Tony Ricci, one of the principal investigators (P.I.’s) at the Stanford Initiative to Cure Hearing Loss (SICHL) and professor in the School of Medicine and professor, by courtesy, of molecular and cellular physiology at Stanford University. At SICHL, researchers are looking at multiple approaches to cure different forms of hearing loss, including through regeneration, stem cell therapy, and gene therapy. “So some of these have timelines of a year or two, and some of these have timelines of 10 years,” says Dr. Ricci. “And some of them we try not think about what the timeline is, because you don’t know.”

This can be hard for journalists to write up, since “We don’t know when” doesn’t make a great headline – even if it is the truth.

Science also requires a willingness to experiment, and qualified people to conduct these experiments. Ricci likens the progress of a hearing loss cure to the search for an effective treatment for HIV and AIDS over the past few decades. There wasn’t one researcher with a lot of money who found the answer. Rather, “It was now you had 1,000 people all trying to answer the question,” Ricci explains. “So there were 1,000 shots and there were a couple of hits, and so it moved forward.”

But the caveat is that there aren’t nearly as many people working in the field of hearing research as there were on HIV, partly because hearing loss isn’t fatal. But it’s also because the ear – specifically the cochlea, which, along with the brain, is responsible for hearing – is a difficult body part for researchers to access. “Hearing doesn’t move forward at the same rate as say vision research, because there’s 10 percent of the people doing it,” Ricci says. “You can count on my hands the number of labs that do the experiments that I do in the world, not in the United States.”

Science is also dependent on, well, scientists. Unlike being a brief sensation on Tik Tok, becoming a scientist in the hearing field isn’t something just anyone can do. Regarding himself and his fellow P.I.’s, Ricci says, “To be successful in science, you need really broad training, broader training that what any of us had way back when we were at school. I think this is specifically true in the hearing field.” This also means finding and recruiting the next generation of scientists, a process in itself.

I had thought that a cure for hearing loss was simply about money – and while things are always at least a little bit about money, it goes far beyond that. While we wait for the leap to a cure, the scientific process is actively happening – perhaps without fanfare, but no less important to the overall goal.

You can help accelerate the progress of SICHL by becoming a donor. For information, email Dr. Cliff Harris at cliff.harris@stanford.edu.

The Stanford Initiative to Cure Hearing Loss: Groundbreaking Work in a Too-Neglected Field

Today is World Hearing Day, an annual global initiative from the World Health Organization to promote hearing care and raise awareness of hearing loss. In honor of this day, I’m going to spotlight an organization doing amazing work in the field of hearing research: The Stanford Initiative to Cure Hearing Loss (SICHL).

I was lucky enough to go to the Stanford campus a few weeks ago to meet with three of the researchers – known as principal investigators (P.I.’s) – and the development director of SICHL. I gleaned so much great information that I’ll be writing a SICHL series. For now, I’d start by introducing the organization and their mission.

SICHL was founded 14 years ago by Dr. Robert Jackler, department chair, and Dr. Stefan Heller, a research professor in the otolaryngology department at Stanford University School of Medicine. Dr. Heller’s research career has focused on finding a cure for deafness.

In 2006, when asked in a development meeting if there was anything that would help his research, Dr. Heller said, “Well, if someone could give us 200 million dollars, we could cure deafness in 10 years.” This led to the formation of SICHL and the recruitment of additional inner ear researchers. There are currently six P.I.’s in SICHL who each have their own lab with post-doctoral students who help conduct their studies, as well as the development director who handles fundraising.

One of the unique aspects of SICHL is that each P.I. has an area of specialty – and together, they can make faster progress on their studies because of this. Of the three P.I.’s I interviewed, Dr. Heller’s expertise is in stem cells, Dr. Nico Grillet’s is in genetics, and Dr. Tony Ricci’s is in electrophysiology. “We have experts in different aspects of this [hearing] research,” said Grillet. “And I don’t see any other center that has this.”

The SICHL labs, in one of the Stanford School of Medicine buildings, are situated in a way that fosters collaboration as well. “There’s a rare co-location here, which is very unusual at an academic medical center,” says Dr. Cliff Harris, SICHL’s development director. “There’s a department of physics and engineering, chemistry, and biology, and they are within 100 yards of where we are in the medical school.”

Recruiting qualified Stanford students to help in the P.I.’s labs is core to the success of the organization. “Training the next generation of scientists to be better than us is really important,” says Ricci. “And having resources to put into that is also really important.”

The SICHL researchers have multi-pronged approaches to examining hearing loss. This includes trying to understand how animals, such as birds, can re-grow their damaged inner ear cells, something humans cannot do; seeking ways to stimulate mammalian hair cells to regenerate, currently being done in mice; inventing immensely powerful microscopes to take incredibly detailed photos of hair cells and even watch hair cells in action transmitting sound in a live animal, in order to understand how genetic mutations cause hearing loss; using sophisticated computer modelling to design new experiments that will reveal the intricate functioning of the cochlea; studying fish with transparent brains to peer into the inner ear of animals with similar genetic hearing loss mutations to humans; and devising ways to avoid the hearing loss caused by toxic medications such as chemotherapy and certain antibiotics.

To conduct these experiments takes money – and donations of all sizes are greatly appreciated. Also, larger donations are fantastic because the team can leverage those funds across the various SICHL labs to make collaborative, transformational advances. You can donate to SICHL or learn more about their mission. Or for more details about how your gift can make a difference, email Dr. Cliff Harris at cliff.harris@stanford.edu.

In my next blog post, I’ll be delving deeper into the science of hearing research – and why despite the headlines, a cure probably isn’t just around the corner (but there’s still a lot of exciting stuff happening!).

When Will There Be a Cure for Hearing Loss?

It’s the dream of many (though not all) with hearing loss: a cure for deafness — a way to restore natural hearing, or provide it to some for the first time.

So far, it’s been elusive, and progress seems to move slowly. Partly this is because hearing loss is not easily corrected the way faulty vision can usually be with glasses or contact lenses. While hearing aids have gotten more sophisticated, they still can’t come close to replicating normal hearing, particularly in noisy environments.

However, I think the larger issue is the societal attitude towards hearing loss. It is mostly ignored, seen as an inevitable part of aging, or treated as a personal fault of the patient (“Just listen to me!”). Because it is not taken seriously, the research has not been well-funded or seen as urgent.

It’s surprising to me that in this day and age, advances towards a cure are mostly contained in the realm of non-profits and academia. Some notable organizations include the Stanford Initiative to Cure Hearing Loss in California, Massachusetts Eye and Ear in Boston, and the Hough Ear Institute in Oklahoma. They need outside funding in order to continue their work, meaning they are reliant on donors. As I’ve written before, the NIH doesn’t even list hearing loss as a condition it funds, despite the fact that it’s the third-most common chronic health condition in the U.S.

More recently, some hearing loss research methods have been patented and for-profit companies formed. The Wall Street Journal covered this last year — such companies include Decibel Therapeutics, Frequency Therapeutics, and Akuous, which are all based in Boston.

What is keeping progress from moving forward? This is something that I’ll seek to keep writing about. It’s on the mind of many those with hearing loss, who don’t want to hear that “someday” this will happen. “Someday” can be soon — if more people prioritize hearing loss as a fully curable condition.

Hearing is Freedom

I think it’s basically impossible for a person with normal hearing to understand what it’s like to have a hearing loss. The only way to have a good idea is to know someone with a hearing loss – but still, this can’t replace firsthand experience.

Recently, I was talking to a friend who is having a difficult time adjusting to a cochlear implant. Although he is an adept lipreader, watching him struggle to follow the most basic conversation, and the amount of energy it zapped from him, was heartbreaking to see. And it occurred to me, maybe the best way to describe it is: hearing is freedom.

When you can hear, you can have a conversation with anyone you want (well, provided you speak the same language). You can conduct business, exchange transactions, get your needs met. You can ask any question and understand the answer.

You wake up and live in a world that is set up for your level of hearing – I can’t tell you how mind-blowing this concept is, because I’ve never really had that. To wake up and just be, without struggle or worry about how your hearing will cause problems during the day, seems so incredibly liberating to me.

You can assume that what you hear is the same as what other people hear, and thus, if something doesn’t make sense, you don’t need to feel embarrassed about asking for clarification.

Some of the biggest bonding experiences in life – like getting together with loved ones and dipping in and out of simultaneous conversations – are effortless for you.

You can travel and understand all the announcements on the P.A. system (or if you can’t, nobody else did either). It’s easy to travel by yourself.

You have no stress about whether or not you’ll be able to hear in crucial times, such as during a job interview or at a doctor’s appointment.

I could go on and on, but essentially it boils down to the same essence: hearing is freedom. People who hear normally don’t realize this, because they don’t know any different. But it a huge, liberating gift to have each and every day.

The Stats Don’t Lie

Imagine that there is a disability that affects 48 million Americans (1): the third-most common chronic health condition in the U.S., more prevalent than diabetes or cancer (2).

Imagine that the condition had a massive economic impact as well: estimates of the economic cost of lost productivity varied from $1.8 to $194 billion, and direct medical costs ranged from $3.3 to $12.8 billion. (3)

And yet, imagine that the condition is constantly downplayed, both by medical research and society in general. The National Institutes of Health (NIH), which is the largest public funder of health research, doesn’t even list the condition as one it funds — despite that it causes great disease burden, ranking 10th in the US among all conditions as a contributor to Disability Adjusted Life Years (a widely-used measure of disease burden), according to the World Health Organization (WHO). (4)

How could this lack of funding for better understanding and treatments be possible when the country is losing billions of dollars in productivity to it?

Imaging that even a mild form of the condition — which many people incorrectly saw as an inevitable part of aging — could cause a child to miss as much of 50% of a classroom discussion. (1) For those with more severe forms of the condition, the outcomes could be much worse.

Despite this, imagine that the cost of treating the condition was mostly covered by the individual in the U.S., not by insurance, (5) only further emphasizing the attitude that it was just the individual’s problem to deal with — despite all the obvious evidence to the contrary.

This condition is real, and it’s hearing loss.

Sources:

  1. Hearing Loss Association of America, “Hearing Loss Facts and Statistics.” https://www.hearingloss.org/wp-content/uploads/HLAA_HearingLoss_Facts_Statistics.pdf?pdf=FactStats
  2. Centers for Disease Control and Prevention, “Hearing Impairment Among Noise-Exposed Workers — United States, 2003–2012.” https://www.cdc.gov/mmwr/volumes/65/wr/mm6515a2.htm
  3. JAMA Otolayngology-Head & Neck Surgery, “The Economic Impact of Adult Hearing Loss
    A Systematic Review.” https://jamanetwork.com/journals/jamaotolaryngology/article-abstract/2647954
  4. New York University, “NYU Researcher: National Institutes of Health’s Lack of Reporting on Hearing Loss Research Spending Runs Counter to Its Stated Goals.” https://www.hearingreview.com/inside-hearing/research/nyu-researcher-publishes-commentary-nihs-hearing-loss-research-funding
  5. The Lancet. “Hearing loss: an important global health concern.” https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(16)30777-2/fulltext

The Other Shoe

For many people, the most pivotal, life-changing factors in their existence happens suddenly: meeting their partner, being inspired to start or change careers, or losing a loved one unexpectedly.

But in my case, the factor that altered the course of my life more than anything occurred over a short period of time, when I was too young to understand what was happening – much less do anything about it.

Around the age of 4 I lost some of my hearing. It happened for no detectable reason whatsoever, besides the mystery of genetics. For all the years since I’ve fielded the same questions from doctors, audiologists, and regular folks trying to convince themselves that there must have been some cause: Where you sick? (No.) Did you have to take some kind of medication? (No.) Were you exposed to a loud noise? (No.)

I think this frightens people, the idea that something so vital could just disappear permanently, through no external cause or fault of their own. They usually look uncomfortable and then change the subject. Or they say, “Well, you seem normal.”

There is a certain ease that people who have never had their body fail them possess. They aren’t aware of it, but I see it.

Even though everyone has problems to deal with, if you wake up in the morning knowing you can rely on your body to do exactly what you need, and that the world is set up for you to function well in it, you have a sense of security and intrinsic trust that life will be okay. Even if you don’t think life will be okay for other reasons – you have emotional scars, financial problems, relationship issues – you don’t doubt your body’s ability to perform in everyday situations.

I also see a commonality between people whose bodies have not won the genetic lottery, be it through hearing loss, surviving trauma, or other physical ailments: Some part of us is always waiting for the other shoe to drop. When will more be taken from us?

At this point in medicine, hearing loss is permanent and usually progressive. That isn’t exactly an uplifting reality.

For years, I had the unconscious and conscious idea that I was broken. It was a message I’d internalized from years of hearing tests that showed I had a hearing loss (at first, mild-to-moderate; now it’s moderate-to-severe), to being one of only two people wearing clunky hearing aids at a school of hundreds, to hearing rude and ignorant comments about my hearing (which I also knew meant there were probably plenty of snide comments I wasn’t overhearing).

Today, I look at hearing loss not as a personal flaw I have to hide but more as a hindrance that I accept as part of my life. I know that doesn’t sound like much, but to go from feeling desperately afraid that anyone would ridicule me for missing what was said to being unbothered (okay, 90% unbothered) when people do so is a big, positive change, I’d say.

Welcome to

Hearing loss affects millions of people — so why doesn’t it get more attention? And why isn’t it taken more seriously? Why are treatment advances so slow?

We’re looking to change that, by showing what it’s really like to be living every day with a challenge that affects virtually every facet of life.