On April 23 of this year, the FDA approved a new treatment which has the ability to restore hearing to a small number of children born with a genetic condition that leaves them deaf. The treatment is called Otarmeni and it's basically a genetically engineered virus that replaces a faulty gene related to hearing. By giving one dose of the virus to children born deaf, those kids develop the ability to hear.
Prior to today’s approval, no disease modifying treatments existed for OTOF-related deafness. Otarmeni is for patients with preserved outer hair cell function and no prior cochlear implant in the same ear...
Genetic mutations cause about half of congenital hearing loss. Variants in the OTOF gene account for 2% to 8% of inherited, non-syndromic cases. Patients with two nonworking copies do not produce otoferlin, disrupting sound signal transmission. Delayed diagnosis can lead to missed treatment windows and lasting speech and language delays.
Otarmeni and the administration kit are a one time biologic-device combination product. It includes a dual adeno-associated virus serotype 1 (AAV1) vector gene therapy administered as a single dose per ear surgically into the cochlea via a syringe and catheter provided in the Administration Kit and connected to an infusion pump. Otarmeni delivers a functional copy of the OTOF gene to inner hair cells to restore otoferlin production and auditory signaling.
The same day, President Trump held a press conference in the Oval Office, in part to announce that Regeneron, the company that produces Otarmeni, would be offering it for free to every newborn who needed it.
Also at the press conference was a mom whose child had received the drug. She praised the results saying the boy could now hear and liked to listen to music. After she said a few words about her son, Trump said, "That's incredible. Even the fake news has to be impressed with this." He added, "They'll find a way to make it a bad story...They'll figure a way. How you going to do it?"
President @realDonaldTrump announces the FDA has approved a new drug from Regeneron called Otarmeni—a gene therapy curing a rare disease causing deafness. Sierra’s 2-year-old son can now HEAR ❤️ https://t.co/b7pXAUNbUF
— Margo Martin (@MargoMartin47) April 23, 2026
It has been quite a few months but this morning the Washington Post proved him right. The story is headlined, "As gene editing for deafness advances, Gallaudet University speaks out." The gist of the story is that maybe we shouldn't assume curing deafness is a good thing. The Post found the dark cloud hanging over this entirely positive story.
At a time when videos of deaf children hearing for the first time go viral, the recent advancements in gene therapy have been celebrated. But for many deaf people, those developments are not good news. They say it could pose a threat to the future of a rich and diverse deaf culture...
“Gallaudet University believes that Deaf people are an essential part of human diversity and bring unique value to society,” the statement reads. “Our signed languages, cultures, knowledge, and ways of seeing the world benefit everyone. Deaf lives are not deficits to be corrected.”
The statement acknowledges that these technologies may bring important medical benefits but says that advances in gene editing also raise questions about who gets to make decisions about the future of deaf people. It calls for such decisions to be “shaped and led by Deaf people.”
“History is filled with examples of societies trying to erase languages, cultures, and knowledge they did not value,” it says. “A humane future comes not from narrowing human diversity, but from learning to understand and live with one another.”
The story then moves on to describe Otarmeni and some of the other gene therapies being developed. But it quickly pivots to a philosopher at Gallaudet who frames this as a tough decision for parents.
As gene editing for deafness continues advancing, “parents are going to have to make some decisions” about whether to receive treatment and what is in the best interest of their child, said Teresa Blankmeyer Burke, a think tank member as well as a professor of philosophy and bioethicist at Gallaudet. Parents by nature have a fear of their children being different from them, she said.
“When you have hearing parents who have a deaf infant, oftentimes they are making decisions out of fear or ignorance about what is possible,” she said. “They don’t know the range of what is possible.”
First of all, kudos to the Post for proving Trump right. He wondered how they were going to make this into a negative story. They did eventually find a way.
Second, I think it's possible to have respect for deaf people who do have a unique way of communicating and a unique culture, without suggesting, as this story does, that children born deaf might be even better off (or at least no worse off) if they aren't given treatment.
Being able to hear is definitely better for the individual children involved than not being able to hear. Turning this into an argument about preserving deaf culture seems selfish. All of the children who can be helped by these new therapies should receive them. It's not a remotely close call. No matter how wonderful deaf culture is, hearing children are a better outcome.
A monumental moment in medical history: the first gene therapy for genetic hearing loss is now FDA approved. As a former Regeneron scientist, I feel very proud. I had the opportunity to hear about this programme while it was still in development. It’s one of the few programmes that, every time you came across it, you felt the medical breakthrough in your bones and privileged just to be there while it was happening. At this moment, it’s important that we look 30 years back when researchers mapped a locus on chromosome 2 to congenital deafness in a Lebanese family (https://t.co/o8ltjHyLNy). They named it DFNB6 (later DFNB9) with no clue about the responsible gene. Three years later, the causal gene came to light: OTOF, encoding a protein called otoferlin (https://t.co/tBGlFPzaQd). Seven years after that, in 2006, pioneering work by Christine Petit revealed that otoferlin is a calcium sensor in the inner hair cell membrane, acting as a molecular trigger that converts sound into electric signals that the brain can read (https://t.co/oxXtifPrTZ). Twenty years fast forward, we now have a successful treatment. Thirty years from discovery to medicine. OTOF-related deafness is congenital, caused by complete deficiency of otoferlin. In these children, the cochlea is structurally intact, hair cells are there, the mechanics of sound transmission work. It’s just that final step, where hair cells hand off the signal to the auditory nerve through neurotransmitter release, that doesn’t happen. Sound arrives and dies at the synapse. It’s deafness due to a defect in the synapse caused by the absence of a single protein, which is what made this a beautiful, clean target for gene therapy. The treatment itself is a feat of molecular engineering. OTOF is too large to fit in a single AAV capsid. The team solved this elegantly by delivering the gene in two halves separately, which then get spliced to produce the full functional protein. A single surgical injection into the cochlea, a molecular miracle unfolds. Results from the CHORD trial were striking: of 20 evaluable patients, including children as young as 10 months, 80% showed meaningful hearing improvement, and by 48 weeks, 42% had achieved normal hearing including the ability to hear whispers. Otarmeni is not only the first gene therapy for deafness, it’s also the first dual-AAV therapy to be approved by the FDA. There are very few things in medicine that come close to giving back a sense like vision, hearing, or touch that a human never had from birth. It’s almost God’s work. A parent witnessing their child who was born deaf hearing their voice for the first time, it’s a joy that no words can describe. Multiply that by the fact that it came from a single injection, a repaired gene, and 30 years of science. We are truly in the golden era of medicine. Regeneron press release: https://t.co/6zvdsT2uzI Below video is from the NEJM publication of CHORD trial (Valayannopoulos et al. NEJM 2025) https://t.co/YvIqwQ0SDu
— Veera Rajagopal (@doctorveera) April 24, 2026
This story reminds me of the recent story about Nikole Hannah-Jones who decided to send her own daughter to underperforming, predominantly black schools as a way to change the system. In the end, she didn't change the system but she did harm her daughter's progress and set her back in terms of her early education. Like many people, I don't understand a parent who would put their cultural politics above their kids, but those people do exist.
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