When doctors told her they had to remove her tongue and voice box to save her life from the cancer that had invaded her mouth, Sonya Sotinsky sat down with a microphone to record herself saying the things she would never again be able to say. <\/p>\n
\u201cHappy birthday\u201d and \u201cI\u2019m proud of you\u201d topped the phrases she banked for her husband and two daughters, as well as \u201cI\u2019ll be right with you,\u201d intended for customers at the architecture firm she co-owns in Tucson, Arizona.<\/p>\n
Thinking about the grandchildren she desperately hoped to see born one day, she also recorded herself reading more than a dozen children\u2019s books, from the Eloise series to Dr. Seuss, to one day play for them at bedtime.<\/p>\n
But one of the biggest categories of sound files she banked was a string of curse words and filthy sayings. If the voice is the primary expression of personality, sarcasm and profanity are essential to Sotinsky\u2019s.<\/p>\n
\u201cWhen you can\u2019t use your voice, it is very, very frustrating. Other people project what they think your personality is. I have silently screamed and screamed at there being no scream,\u201d Sotinsky said recently, referring to rudimentary voice technology or writing notes by hand before she chanced upon a modern workaround. \u201cWhat the literal you-know-what?\u201d<\/p>\n
Fighting invasive oral cancer at age 51 forced Sotinsky to confront the existential importance of the human voice. Her unique intonation, cadence, and slight New Jersey accent, she felt, were fingerprints of her identity. And she refused to be silenced.<\/p>\n
While her doctors and insurance company saved her life, they showed little interest in saving her voice, she said. So she set out on her own to research and identify the artificial intelligence company that could. It used the recordings Sotinsky had banked of her natural voice to create an exact replica now stored in an app on her phone, allowing her to type and speak once again with a full range of sentiment and sarcasm.<\/p>\n
\u201cShe got her sass back,\u201d said Sotinsky\u2019s daughter, Ela Fuentevilla, 23. \u201cWhen we heard her AI voice, we all cried \u2014 my sister, my dad, and I. It\u2019s crazy similar.\u201d<\/p>\n
\u2018Your Voice Is Your Identity\u2019<\/strong><\/p>\n It took close to a year for doctors to detect Sotinsky\u2019s cancer. She complained to her orthodontist and dentist multiple times about jaw pain and a strange sensation under her tongue. Then water began dribbling down her chin when she drank. When the pain got so intense that she could no longer speak at the end of each day, Sotinsky insisted her orthodontist take a closer look.<\/p>\n \u201cA shadow cast over his face. I saw it when he leaned back,\u201d she said, \u201cthat look you don\u2019t want to see.\u201d<\/p>\n That\u2019s when she started recording. In the five weeks between her diagnosis and surgery to remove her entire tongue and voice box \u2014 in medical terms, a total glossectomy and laryngectomy \u2014 she banked as much of her voice as she could manage.<\/p>\n \u201cYour voice is your identity,\u201d said Sue Yom<\/a>, a radiation oncologist at the University of California-San Francisco, where Sotinsky got treatment. \u201cCommunication is not only how we express ourselves and relate to other people, but also how we make sense of the world.\u201d<\/p>\n \u201cWhen the voice is no longer available, you can\u2019t hear yourself thinking out loud, you can\u2019t hear yourself interacting with other people,\u201d Yom said. \u201cIt impacts how your mind works.\u201d<\/p>\n People who lose their voice box, she added, are at higher risk for long-term emotional distress<\/a>, depression, and physical pain compared with those who retain it after cancer treatment. Close to a third lose their job<\/a>, and the social isolation<\/a> can be profound.<\/p>\n Most laryngectomy patients learn to speak again with an electrolarynx<\/a>, a small battery-operated box held against the throat that produces a monotonic, mechanical voice. But without a tongue to shape her words, Sotinsky knew that wouldn\u2019t work for her.<\/p>\n When Sotinsky had her surgery in January 2022, AI voices were still in their infancy. The best technology she could find yielded a synthetic version of her voice, but it was still flat and robotic, and people strained to understand her.<\/p>\n She got by until mid-2024, when she read about tech companies using generative AI to replicate a person\u2019s full range of natural inflection and emotion.<\/p>\n While companies can now re-create a person\u2019s voice from snippets of old home movies or even a one-minute voicemail, 30 minutes is the sweet spot.<\/p>\n Sotinsky had banked hours reading children\u2019s books aloud.<\/p>\n \u201cEloise saved my voice,\u201d Sotinsky said.<\/p>\n Now she types what she wants to say into a text-to-speech app on her phone, called Whisper<\/a>, which translates and broadcasts her AI voice through portable speakers.<\/p>\n Most doctors and speech therapists who work with head-and-neck cancer patients don\u2019t realize AI software can be used this way, Yom said, and with their focus on saving lives they often don\u2019t have the bandwidth to encourage patients to record their voices before they lose them in surgery.<\/p>\n Health insurance companies likewise prioritize treatments that extend life over those that improve its quality \u2014 and typically avoid covering new technologies until data proves their actuarial value.<\/p>\n Sotinsky and her daughter spent months wrangling with claims adjusters at Blue Cross Blue Shield of Arizona<\/a>, but the insurer refused to reimburse Sotinsky for the $3,000 she spent on her initial assistive speaking technology.<\/p>\n \u201cApparently, having a voice is not considered a medical necessity,\u201d Sotinsky quipped, her AI voice edged with sarcasm.<\/p>\n Sotinsky now pays the $99 monthly fee for her AI voice clone out-of-pocket.<\/p>\n \u201cWhile health plans cover both routine and lifesaving care, assistive communication devices are typically not covered,\u201d said Teresa Joseph<\/a>, a spokesperson for Blue Cross Blue Shield of Arizona. \u201cAs AI provides opportunities to impact health, we imagine that coverage criteria will evolve nationally.\u201d<\/p>\n Research Might Lead to Insurance Coverage<\/strong><\/p>\n Sotinsky resolved to use her newfound voice to help others regain theirs. She stepped back from her work in architecture and built a website detailing her voice banking journey \u2014 voicebanknow.com<\/a>. She tells her story at conferences and webinars, including an oncology conference in Denver that Yom organized for 80 scientists.<\/p>\n One doctor who attended, Jennifer De Los Santos<\/a>, was so inspired by hearing Sotinsky\u2019s voice that she began laying the groundwork for a clinical trial on the impact AI technology has on patients\u2019 communication and quality of life. That type of research could generate the data health insurers need to measure actuarial value \u2014 \u201cand therefore justify coverage by insurance,\u201d said De Los Santos, a head-and-neck cancer researcher and professor at Washington University in St. Louis.<\/p>\n Breast cancer survivors faced a similar battle in the 1980s and \u201990s, she added. Insurers initially refused to cover the cost of breast reconstruction after a mastectomy, calling the procedure cosmetic and unnecessary.<\/p>\n It took years of patient advocacy and carefully crafted data showing reconstruction had a profound impact on women\u2019s physical and emotional well-being before the federal government mandated insurance coverage<\/a> in 1998.<\/p>\n Both De Los Santos and Yom said research data on AI voice clones will likely follow a similar path, eventually proving that a fully functioning, natural-sounding voice can lead to not only a better life, but a longer one.<\/p>\n In recent months, Sotinsky\u2019s AI voice literally helped save her life. Her cancer had resurged in her lungs and liver. Her voice allowed her to communicate with her doctors and participate fully in developing the treatment plan. It showed her just how \u201cmedically necessary\u201d having a voice is.<\/p>\n She noticed that doctors and nurses took her more seriously. They didn\u2019t tune out the way people often did when she relied on her more robotic, synthesized voice. It seemed they saw her as more fully human.<\/p>\n \u201cIf someone can only communicate using a few words at a time, and not elaborate and interface more fully, it\u2019s natural that you can\u2019t detect that they have more depth of thought,\u201d she said. \u201cBeing able to dialogue with my care team in a more seamless way is vital.\u201d<\/p>\n While doctors successfully treated her latest round of cancer, Sotinsky, now 55, said she is confronting her odds in a new way, facing the reality that she will likely die much sooner than she wants.<\/p>\n All over again, she realized how crucial her voice is for maintaining perspective on life and a sense of humor in the face of death.<\/p>\n \u201cI tend to forget and think I am fine, when in reality, this is forever now. Emotionally, you start to get cocky again, and this was like, Whoa, b****, we ain\u2019t playing. This cancer is real<\/em>,\u201d Sotinsky said, typing her next phrase with a mischievous grin.<\/p>\n \u201cSarcasm is part of my love language.\u201d<\/p>\n This article is from a partnership with <\/em>KQED<\/em><\/a> and <\/em>NPR<\/em><\/a>.<\/em><\/p>\n KFF Health News<\/a> is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF\u2014an independent source of health policy research, polling, and journalism. Learn more about KFF<\/a>.<\/p>\nUSE OUR CONTENT<\/h3>\n