Grace Armant, now 84 years old, lost her power of speech due to Lou Gehrig’s disease. However, she still voices her thoughts on her insurance.

Her doctors have made multiple requests to UnitedHealthcare for coverage of a breathing machine that is necessary for Armant’s treatment of a life-threatening illness, but these requests have been rejected.

Armant typed slowly into a device that spoke for her, stating that the machine was necessary and they were not.

Medical professionals nationwide state that UnitedHealthcare and other insurance companies have increased obstacles for obtaining coverage for specific home ventilators, which are essential for patients like Armant whose lungs are deteriorating. According to doctors, patients frequently face the hurdle of having to use less efficient and lower-cost devices before their insurance will cover the necessary equipment. Additionally, in situations where patients move from their bed to a wheelchair, insurers may refuse to cover a second ventilator.

Jaggar DeMarco, a PhD candidate at Temple University, patiently waited for over three years to obtain his degree.

He stated, “Respiration is not a privilege. It is simply the bare minimum, which is what we are requesting.”

Several doctors are of the opinion that insurance companies are causing difficulties for patients due to the increase in prescriptions for medical devices. The US Department of Health and Human Services Office of Inspector General reported that Medicare spending on ventilators rose from $3 million to almost $269 million from 2009 to 2017.

Insurance companies state that they provide coverage for the machines, however, the extent of the coverage may be influenced by multiple factors.

These ventilators, known as “noninvasive,” assist patients in breathing continuously by pushing air into their lungs, often using a mask. The term “noninvasive” comes from the fact that they do not need invasive procedures such as trachea surgery to keep the airway open, unlike those used in medical facilities.

The machines come equipped with battery backups, ensuring that they can continue functioning during power outages. Additionally, they are designed to have a higher performance than other devices intended for nighttime use, such as for managing sleep apnea. However, with a price tag of approximately $1,200 per month, they can be three times costlier than these other options.

According to doctors, these ventilators can extend the lifespan of individuals diagnosed with Lou Gehrig’s disease, also referred to as amyotrophic lateral sclerosis.

According to Chuck Coolidge, the chief strategy officer for VieMed, a company that supplies respiratory equipment to patients in 46 states, insurance declines have increased for individuals with advanced stages of chronic obstructive pulmonary disease.

According to him, this includes the approval of new requests as well as extensions or renewals.

At the beginning of 2023, he remarked that it was as if a switch had suddenly been turned on.

A representative from UnitedHealthcare, Heather Soule, stated that their company provides coverage for the machines and will review requests if new information is received. Coverage may vary depending on the patient’s condition, the terms of their health plan, or guidelines from the federal Medicare program.

Dr. John Hansen-Flaschen, a pulmonary medicine specialist from the University of Pennsylvania, stated that the guidelines allow insurers to deny numerous requests for ventilators, including those for critically ill patients.

The Medicare Advantage plans, which are supported by the government and managed by UnitedHealthcare, have a high rejection rate for initial ventilation requests, according to neurologist Dr. Cathy Lomen-Hoerth from the University of California San Francisco.

Dale Harper of West Virginia had to persist for months and make a heartfelt request before UnitedHealthcare agreed to cover a ventilator for his 25-year-old son, Jacob. Jacob suffers from a rare and aggressive type of ALS.

When the doctor’s attempts to appeal were unsuccessful, Harper contacted a supervisor through the phone number listed on Jacob’s insurance card.

“I stated, ‘I am able to provide nourishment for him, assist him in using the bathroom, and transfer him from one location to another’,” the individual from Winfield, West Virginia, recounted. “The only thing I am not capable of doing is breathing on his behalf…and unfortunately, he is unable to breathe on his own.”

Harper reported that approval for ventilator coverage was granted within one hour of the initial call made in the early part of last year.

Medical professionals looking after Armant, a resident in a suburban area near New Orleans, report regular and satisfactory access to ventilators.

Deidre Devier, an experimental psychologist at LSU Health who focuses on cognitive disorders, stated that there was no anticipation of any issues.

In May 2022, they initially applied for coverage. Devier stated that Armant had only been receiving coverage for approximately three months towards the end of that year. She mentioned that a medical device company had been supplying Armant’s ventilator at no cost while their case was being appealed. However, the appeals process has now concluded.

Armant’s daughter has expressed interest in initiating hospice care. This would provide coverage for a ventilator, but it would restrict her mother from consulting with her usual doctors. She is also searching on the internet for a reconditioned machine.

Terrellyn Armant stated that she lacks $20,000 necessary for purchasing the machine.

Both patients with UnitedHealthcare coverage have authorized the insurer to discuss their cases in writing. However, Soule declined to provide a comment on the record.

Difficulties with coverage are not just exclusive to UnitedHealthcare. According to DeMarco, a student at Temple University, Aetna rejected a plea for a second respiratory machine and rejected multiple appeals. Eventually, his father’s company superseded the insurer’s decision and granted coverage.

Medical professionals suggest using a secondary ventilator for individuals who utilize wheelchairs during the daytime. This helps prevent errors in adjusting the device’s settings when transferring them from their bed.

A 30-year-old individual named DeMarco, who suffers from chronic respiratory failure, expressed frustration with insurance companies and bureaucracy dictating their life and opportunities.

According to a representative from Aetna, the company is unable to provide specific information on individual cases. However, they did note that Aetna does extend coverage for secondary ventilators in specific situations. Aetna’s policy bulletin states that these devices are considered necessary for individuals who require a second ventilator for their wheelchair during daytime use.

Dr. Lisa Wolfe, a professor at Northwestern’s Feinberg School of Medicine, observed an increase in ventilator coverage issues following advancements in technology that improved the usability of the devices. This resulted in a higher utilization among patients with non-life-threatening conditions.

According to her, the insurance companies are responding to the increased usage.

Patients with ALS who do not have access to a ventilator have few choices. They may opt for a covered device, although its effectiveness is limited. Alternatively, they can seek coverage for a ventilator by entering hospice care or undergoing a tracheostomy surgery.

According to Hansen-Flaschen, a physician from Penn, there is a possibility that they will frequently enter and exit hospitals.

He stated that if they die before their time, it will be a terrible death as they will struggle to breathe.

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The Science and Educational Media Group of the Howard Hughes Medical Institute provides assistance to the Associated Press Health and Science Department. The content is solely the responsibility of the AP.