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Insurance denied her a voice, but this doctor wouldn’t back down

Neil Baum, MD
Conditions
January 15, 2025
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Our nation and the health care industry have been in shock following the assassination of the CEO of one of the largest insurance companies in the U.S. The brazen killing of Brian Thompson and the suspected shooter Luigi Mangione has captured America’s attention. The assassination has focused public outrage toward the health care insurance industry and revealed a lack of empathy for the victim and his family. A recent survey showed that 41 percent of those aged 18–29 felt the killing was “acceptable.” It is noteworthy that the stock price for UnitedHealthcare has taken a dive following the assassination.

There are many occasions when an insurance company puts the doctor in the middle of a coverage issue between the patient and the company. Insurance companies are motivated to keep down costs and often deny coverage for medications, services, treatments, or durable medical equipment (DME). At present, there is no evidence that the assassin was insured by United Health Care or was denied coverage for his medical problems.

While this recent event has polarized our nation, I want to share one of my successful experiences as an advocate for my patient.

Melissa—that’s her real name, and her name is used with her permission—was a quadriplegic patient from birth due to cerebral palsy. She could not use her voice and could only make unintelligible sounds understood only by her parents and close friends. She wanted to attend public high school but could not communicate with her teacher or classmates. With public funds, she received a voice synthesizer (VS). The device allowed her to control a computer program with her mouth, selecting words that became audible and even digitized for homework and other assignments. Melissa learned to use the VS well and graduated with honors in her class.

Upon graduation, Melissa’s parents requested that she be allowed to keep the VS program so she might attend college. The school board met and denied the request, comparing the VS to a football helmet used by a player while on the team, which could not be given to players upon graduation. The VS would not be used by any other student and would remain in the school’s closet, gathering dust and eventually being discarded. Despite this, the school refused to grant her the use of the VS after graduation.

I suggested that her family request a VS device from the family’s insurance company, which cost about $10,000. The medical director of the insurance company denied the request. I contacted the medical director to request an explanation. He told me that the VS was a “creature comfort” and that the insurance company would not pay for it. I wrote a letter on behalf of Melissa to the medical director, copying Melissa’s father’s employer, UPS, and requesting an appeal.

I could not attend the hearing—this was long before Zoom meetings—but I joined a conference call with Melissa’s parents and the insurance company’s medical director. He explained that Melissa was born without a voice; therefore, it wasn’t the insurance company’s responsibility to provide her with a voice she didn’t have at birth. He further stated that replacing her voice was not part of their UPS contract and compared the situation to a child born without a leg, for whom a prosthesis would not be provided unless the leg was lost after birth.

This response infuriated both the parents and me. Melissa’s father, fearful of causing a problem with his employer, hesitated to pursue the matter and considered taking out a bank loan to buy the VS so Melissa could attend college. With the family’s permission, I decided to advocate for Melissa.

I wrote to the state insurance commissioner where Melissa lived, with copies sent to the employer and the medical director. I also contacted the family’s U.S. congressman and senators, asking for their intervention. Additionally, I wrote to 60 Minutes, offering Melissa and her family’s story to expose the insurance company and employer on national television. A copy of this letter was sent to the medical director and the employer.

One senator responded by sending a letter to the state insurance commissioner and the medical director, requesting a better explanation for the denial. Within a week, I received a letter from the medical director authorizing the VS.

Melissa received a new VS and was able to attend college. She is now an author working on a book about living with cerebral palsy, which includes a chapter on how she regained her voice.

Advocating for my patients was one of the highlights of my medical career. There are many instances when we face rejection from insurance carriers, denying treatments or devices that restore health, prevent hospitalizations, and even give patients their voices back.

Certainly, I cannot advocate for every patient with insurance issues. Still, I can tackle the most egregious rejections and serve as an advocate. I can share that there is nothing in medicine more satisfying than standing up for your patient when the insurance company prioritizes its bottom line over the patient’s health care and well-being.

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I agree that the American health care system is ailing and needs major reform to address pain points, including dissatisfaction among patients and physicians with the insurance industry. My take-home message is that we don’t have to resort to violence to fix the system. We can move toward a fairer, more efficient model that focuses on the patient, ensuring all Americans have access to high-quality, affordable health care.

Neil Baum is a urologist.

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