Editor’s Note: Excerpted from Shouting Won’t Help: Why I—and 50 Million Other Americans—Can’t Hear You, by Katherine Bouton, published by Sarah Crichton Books, an imprint of Farrar, Straus and Giroux, LLC. Copyright © 2013 Katherine Bouton. All rights reserved.
“You’ll never be deaf,” Dr. Hoffman said to me years ago. At the time, I thought he meant I’d never lose all my hearing. But what I know now is that technology would take over when my ears no longer worked. Through a cochlear implant, I would continue to hear long after my ears ceased to function.
Research holds the promise that the kind of hearing loss I have may someday be reversible, returning the ear to close to its original pristine condition. Probably not soon and not for me, but most researchers think that within a decade they may have the tools that will eventually allow doctors to stop the progression of sensorineural hearing loss, including age-related hearing loss. Putting those tools into practice will take much longer. (Gene therapy, for people whose hearing loss has a genetic basis, will probably come sooner, possibly in the next decade.) The best guesses for hair cell regeneration—for the much larger group of people whose sensorineural loss is caused by noise or ototoxins or age—range anywhere from twenty to fifty years.
Until recently, scientists focused on the development of devices that would take the place of normal hearing: hearing aids and cochlear implants. The pharmaceutical industry, usually so quick to jump on the opportunity to medicalize a chronic age-related condition—dry eyes and wrinkles, trouble sleeping, lagging sexual function, bladder control, memory loss—has not paid much attention to age-related hearing loss, in terms either of prevention or cure. There are no FDA-approved drugs for the treatment of hearing loss. Demographics alone would suggest they are missing a big opportunity.
In October 2011, the Hearing Health Foundation (formerly the Deafness Research Foundation) held a symposium in New York to kick off its new campaign, called the Hearing Restoration Project, an ambitious program that had enlisted, at that point, fourteen researchers from ten major hearing & loss research centers in the United States. This consortium will share findings, with the goal of developing a biological cure for hearing loss in the next ten years. With a fund-raising target of $50 million, or $5 million a year, the Hearing Restoration Project will tackle the problem of hearing loss with the aim of curing it, not treating it.
The funding is relatively small right now, but there is hope that the foundation will be able to raise more in future years. Individual consortium members may currently receive somewhere between 5 to 20 percent of a laboratory’s annual bud get from the Hearing Health Foundation. But the collaborative nature of the venture is unusual. (A similar consortium exists for the study of myelin diseases—a factor in multiple sclerosis as well as hereditary neurodegenerative diseases.) Under its previous name, the Deafness Research Foundation, funding was limited to early career support to researchers. They’ve now added the Hearing Restoration Project.
The symposium, titled “The Promise of Cell Regeneration,” brought together leading researchers in the field of hearing loss. Dr. George A. Gates, an M.D. and the scientific director of the Hearing Restoration Project, chaired the program. The speakers included Sujana Chandrasekhar, an M.D. and director of New York Otology, who talked from a clinical perspective about the current state of hearing loss research. Ed Rubel, from the University of Washington, discussed the history of hair cell regeneration research and his current work on regenerating hair cells through pharmaceutical applications. Stefan Heller discussed his lab’s announcement in May of 2010 of the first successful attempt at generating mammalian hair cells (of mice) in a laboratory setting from stem cell transplants. Andy Groves, from Baylor, discussed the many still-existing hurdles to hair cell regeneration in humans. Unable to attend was Douglas Cotanche, currently working at Harvard on noise-induced hearing loss in military personnel.