Lou Gehrig\u2019s disease took away Grace Armant\u2019s ability to speak, but the 84-year-old still has plenty to say about her insurance.<\/p>\n\n\n\n
UnitedHealthcare has rejected several requests from her doctors for coverage of a machine Armant needs to breathe as she deals with the fatal illness.<\/p>\n\n\n\n
\u201cThey are no good,\u201d Armant said, typing slowly into a device that speaks for her. \u201cI can\u2019t do without the machine.\u201d<\/p>\n\n\n\n
Doctors around the country say UnitedHealthcare and other insurers have made it harder to get coverage for certain home ventilators that patients like Armant need as their lungs fail. They say patients often must struggle first with less effective \u2014 and cheaper \u2014 devices before some insurers will pay. In other cases, insurers balk at paying for a second machine needed when patients transfer from their bed to a wheelchair.<\/p>\n\n\n\n
\u201cBreathing is not a luxury,\u201d he said. \u201cIt\u2019s really the bare minimum, and that\u2019s what we\u2019re asking for.\u201d<\/p>\n\n\n\n
Some physicians believe insurers are making it harder on patients because more of the devices are being prescribed. Spending by the federal government\u2019s Medicare program on the ventilators jumped from about $3 million to nearly $269 million between 2009 and 2017, according to the U.S. Department of Health and Human Services Office of Inspector General.<\/p>\n\n\n\n
Insurers say they do cover the machines, but that coverage can depend on several factors.<\/p>\n\n\n\n
These \u201cnoninvasive\u201d ventilators help patients breathe around the clock by forcing air into the lungs, often through a mask. They are called noninvasive because they don\u2019t require trachea surgery to open the airway, like ones used in hospitals.<\/p>\n\n\n\n
The machines have battery backups so they can keep working when the power goes out. They also are more powerful than other devices meant to be used mainly at night for conditions like sleep apnea. At around $1,200 a month, they can be three times as expensive as those devices.<\/p>\n\n\n\n
These ventilators can help prolong the life of someone with Lou Gehrig\u2019s disease, also known as amyotrophic lateral sclerosis, doctors say.<\/p>\n\n\n\n
But insurance rejections have picked up for those patients and people dealing with advanced cases of chronic obstructive pulmonary disease, said Chuck Coolidge, chief strategy officer for VieMed, which provides respiratory equipment for patients in 46 states.<\/p>\n\n\n\n
That includes both initial approvals and reauthorizations, he said.<\/p>\n\n\n\n
\u201cIn early 2023, it was almost like a switch flipped,\u201d he said.<\/p>\n\n\n\n
UnitedHealthcare spokeswoman Heather Soule said her company covers the machines and re-evaluates requests if it gets new information. Coverage can depend on the patient\u2019s condition, terms of their health plan or guidelines from the federal government\u2019s Medicare program.<\/p>\n\n\n\n
Those guidelines give insurers room to reject many ventilator requests, even those for seriously ill patients, said Dr. John Hansen-Flaschen, a pulmonary medicine expert with the University of Pennsylvania.<\/p>\n\n\n\n
Government-funded Medicare Advantage plans run by UnitedHealthcare now deny nearly all initial requests for the ventilators, said Dr. Cathy Lomen-Hoerth, a neurologist with the University of California San Francisco.<\/p>\n\n\n\n
In West Virginia, Dale Harper says it took several months and a personal plea before UnitedHealthcare would cover a ventilator for his 25-year-old son, Jacob, who has a rare and aggressive form of ALS.<\/p>\n\n\n\n
After appeals from Jacob\u2019s doctor failed, Harper called a number on his insurance card and asked for a supervisor.<\/p>\n\n\n\n
\u201cI said, \u2018I can feed him, I can help him go to the bathroom, I can move him from one place to the other,\u2019\u201d the Winfield, West Virginia, resident recalled. \u201cThe only thing I cannot do is breathe for him \u2026 and he can\u2019t breathe.\u201d<\/p>\n\n\n\n
Harper said ventilator coverage was approved within an hour of that call early last year.<\/p>\n\n\n\n
Doctors caring for Armant, who lives outside New Orleans, say they usually get decent ventilator coverage.<\/p>\n\n\n\n
\u201cNo one thought there would be a problem,\u201d said Deidre Devier, an LSU Health experimental psychologist who specializes in cognitive disorders.<\/p>\n\n\n\n
They first sought coverage in May, 2022, and Devier said Armant has only had it for around three months near the end of that year. She said a medical device company has been providing Armant\u2019s ventilator for free while her case was appealed. But those appeals have ended.<\/p>\n\n\n\n
Armant\u2019s daughter said she\u2019s considering starting hospice care, which would allow for ventilator coverage but prevent her mom from seeing her regular doctors. She\u2019s also looking online for a refurbished machine.<\/p>\n\n\n\n
\u201cShe doesn\u2019t have $20,000″ to buy the machine, Terrellyn Armant said.<\/p>\n\n\n\n
Representatives of both patients with UnitedHealthcare coverage gave the insurer written permission to discuss their cases, but Soule declined to comment on the record.<\/p>\n\n\n\n
Coverage complications aren\u2019t limited to UnitedHealthcare. DeMarco, the Temple student, said Aetna denied a request for a second breathing machine, and then several appeals. Eventually, his father\u2019s employer essentially overruled the insurer and allowed coverage.<\/p>\n\n\n\n
Doctors recommend a second ventilator for people who use wheelchairs during the day. That avoids mistakes in adjusting the machine\u2019s settings when moving someone from their bed.<\/p>\n\n\n\n
\u201cI\u2019m constantly angry that my life and what I can do with (it) is sometimes determined by insurance companies and bureaucracy,\u201d said the 30-year-old DeMarco, who has chronic respiratory failure.<\/p>\n\n\n\n
An Aetna representative said the company could not comment on individual cases. But he added that Aetna does cover second ventilators in certain circumstances. Aetna\u2019s policy bulletin says they are medically necessary for people who need an additional ventilator for their wheelchair during the day.<\/p>\n\n\n\n
Ventilator coverage problems started picking up after technology improvements made the devices easier to use, according to Dr. Lisa Wolfe, a professor at Northwestern\u2019s Feinberg School of Medicine. That led to a rise in use for patients with conditions that are not immediately life-threatening.<\/p>\n\n\n\n
She said she thinks insurers are reacting to that expanded use.<\/p>\n\n\n\n
ALS patients without ventilator access have limited options. They can use a device that\u2019s covered but doesn\u2019t work as well. They may get ventilator coverage by entering hospice care or having a tracheostomy.<\/p>\n\n\n\n
They also might wind up bouncing in and out of hospitals, said Hansen-Flaschen, the Penn physician.<\/p>\n\n\n\n
\u201cOr they die prematurely, and it\u2019s a wretched death because they can\u2019t breathe,\u201d he said.<\/p>\n\n\n\n