When doctors told her they would need to remove her tongue and vocal cords to save her life from cancer in her mouth, Sonya Sotinsky sat down with a microphone and recorded words she would never be able to say again.
“Happy birthday” and “I’m proud of you” took up phrases she saved for her husband and two daughters, as well as “I’ll be right there with you,” which she intended for clients of the architecture firm she co-owns in Tucson, Arizona.
Thinking about the grandchildren she hoped would one day be born, she read more than a dozen children’s books, from the Eloise series to the Dr. Seuss series, and even recorded herself playing for her children at bedtime one day.
But one of the biggest types of sound files she saved was a series of swear words and dirty words. If voice is the primary expression of personality, then in Sotinsky’s case sarcasm and profanity are essential.
“It’s very frustrating when you can’t use your voice. Other people project what they think of your personality. I used to scream and scream in silence,” Sotinsky said, referring to his rudimentary voice skills or writing notes by hand before he recently discovered modern solutions. “Literally what do you know?”
Battling invasive oral cancer at age 51 forced Sotinsky to confront the existential importance of the human voice. Her unique accent, cadence, and slight New Jersey accent, she felt, were the fingerprints of her identity. And she refused to remain silent.
Her doctors and insurance company saved her life, she said, but showed little interest in saving her voice. So she began researching and identifying artificial intelligence companies on her own. Sotinsky recorded her natural voice and created an exact replica that is now stored on an app on her phone, allowing her to once again type and speak with emotion and sarcasm.
“She regained her speech,” said Sotinsky’s daughter, Ela Fuentevilla, 23. “When we heard her AI voice, my sister, my father and I all cried. It’s so similar.”
‘Your voice is your identity’
It took doctors almost a year to discover Sotinsky’s cancer. She complained several times to her orthodontist and dentist about jaw pain and strange sensations under her tongue. Then, as she drank, water began to run down her chin. When the pain became so severe that he could no longer speak by the end of the day, Sotinsky recommended a dentist take a closer look.
“There was a shadow on his face. I saw it when he leaned back,” she said. “That’s what you don’t want to see.”
From then on she started recording. In the five weeks between her diagnosis and surgery to remove her entire tongue and vocal cords (the medical terms are glossectomy and laryngectomy), she had as much voice as she could handle.
“Your voice is your identity” brineRadiation oncologist at the University of California, San Francisco, where Sotinsky received treatment. “Communication is not only the way we express ourselves and relate to others, but it is also the way we make sense of the world.”
“When you can no longer hear your voice, you can’t hear yourself thinking out loud or you can’t hear yourself interacting with others,” Yom said. “It affects the way your mind works.”
People who have lost their vocal cords include: Higher risk of long-term emotional distressDepression and physical pain are compared to those that persist after cancer treatment. close to Third, lose your joband social isolation It can be profound.
Most laryngectomy patients learn: Try speaking with the electric larynx again.It’s a small, battery-operated box held against the throat that produces a monotonous, mechanical voice. But with no tongue to form her words, Sotinsky knew it wouldn’t work for her.
When Sotinsky had surgery in January 2022, AI voices were still in their infancy. The best technology she could find created a synthetic version of her voice, but it still sounded flat and robotic, and people struggled to understand her.
She read about a technology company using generative AI to replicate all of the natural inflections and emotions of humans by mid-2024.
Now, companies can recreate a human voice from snippets of old home movies or even a one-minute voicemail, but 30 minutes works best.
Sotinsky spent a lot of time reading children’s books aloud.
“Eloise saved my voice.” Sotinsky said.
Now she types what she wants to say into a text-to-speech app on her phone. called a whisperTranslate and broadcast AI voices through portable speakers.
Most doctors and speech therapists who treat patients with head and neck cancer don’t realize that AI software can be used in this way, and because they are focused on saving lives, they often cannot afford to encourage patients to record their voices before they lose them in surgery, Yom said.
Likewise, health insurance companies prioritize treatments that extend lifespan over those that improve quality and generally avoid covering new technologies until data proves their underwriting value.
Sotinsky and her daughter argued with the insurance claims adjuster for months. Blue Cross Blue Shield of ArizonaBut the insurance company refused to reimburse Sotinsky for the $3,000 he initially spent on assistive speech technology.
“Clearly having a voice is not considered a medical necessity.” Sotinsky said wittily in a sarcastic AI voice.
Sotinsky now pays $99 per month for AI voice cloning out of pocket.
“Health insurance covers both routine and life-saving care, but assistive communication devices are typically not covered,” he said. Teresa JosephSpokesperson for Blue Cross Blue Shield of Arizona. “As AI provides opportunities to impact health, we envision coverage standards will evolve across the country.”
Research may lead to insurance coverage
Sotinsky decided to use his newfound voice to help others regain theirs. She retired from architecture and built a website detailing her voice banking journey. voicebanknow.com. She tells her story at conferences and webinars, including an oncology conference in Denver that Yom organized for 80 scientists.
One doctor in attendance, Jennifer of the SaintsShe was so inspired by Sotinsky’s voice that she began laying the groundwork for clinical trials on the impact of AI technology on patient communication and quality of life. This type of research can generate the data that health insurers need to measure actuarial value, “and thus justify insurance coverage,” said De Los Santos, a head and neck cancer researcher and professor at Washington University in St. Louis.
Breast cancer survivors faced similar battles in the 1980s and ’90s, she added. Insurers initially refused to cover the cost of breast reconstruction after a mastectomy, saying the procedure was cosmetic and unnecessary.
It took years of patient advocacy and carefully crafted data showing that reconstruction had a significant impact on women’s physical and emotional well-being before the federal government. Mandatory Insurance Coverage In 1998.
De Los Santos and Yom said research data on AI voice clones will likely follow a similar path, eventually proving that fully functioning, natural voices can lead to not only better but longer lives.
In recent months, Sotinsky’s AI voice has literally helped save her life. The cancer returned in her lungs and liver. Her voice allowed her to communicate with her doctors and participate fully in the development of her treatment plan. It showed her how “medically necessary” it was to have a voice.
She noticed that doctors and nurses were taking her more seriously. They didn’t ignore her the way people often did when she relied on her robotic, synthesized voice. They seemed to see her as a more fully human being.
“If someone can only communicate in a few words at a time, and cannot interface with more sophistication and perfection, it stands to reason that we cannot detect that that person has deeper thoughts,” she said. “It’s important to be able to communicate more seamlessly with your healthcare team.”
Although doctors successfully treated her most recent cancer, Sotinsky, now 55, said she is confronting her adversity in a new way, facing the reality that she will likely die much sooner than she would like.
She once again realized how important her voice was in maintaining her perspective on life and sense of humor in the face of death.
“I tend to think it’s okay and forget about it, but the reality is that it’s forever now. Emotionally, I start to feel complacent again, and this is what it feels like. Whoa, motherfucker, we don’t play. this cancer is real“Sotinsky said, typing the following phrase with a mischievous smile:
“Sarcasm is part of my love language.”
This article was written in collaboration with our partners. KQED and NPR.
