Derek McManus has ALS, however his insurer initially refused to offer a sophisticated medical ventilator. Every machine can price insurers greater than $10,000. An impartial appeals reviewer ordered the insurer to offer one.
Lauren Petracca for KFF Well being Information
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Lauren Petracca for KFF Well being Information
On trip in Mexico final 12 months, Michael DiPlacido handed out twice whereas scuba diving and once more in his lodge. Again in St. Louis, Mo., docs recognized him with amyotrophic lateral sclerosis, or ALS, an incurable illness that usually requires mechanical air flow.
When his son Adam DiPlacido tried to discover a everlasting place to take care of his father, who now wanted a ventilator to breathe by a tracheostomy tube, he found none of Missouri’s practically 500 nursing houses may take him.
“I by no means thought it could be simple, however I by no means thought it could be this difficult,” Adam mentioned.
A KFF Well being Information investigation discovered widespread flaws and gaps in take care of a number of the nation’s most debilitated individuals: those that can’t breathe on their very own.
Spinal wire accidents, strokes, persistent obstructive pulmonary illness, and neurological ailments resembling a number of sclerosis have left tens of hundreds of Individuals completely depending on ventilators. The obstacles these sufferers face provide a stark instance of how the US’ disjointed well being care system makes coping with extreme sickness a lot more durable.
The investigation discovered sufferers are ceaselessly stymied in efforts to get their insurers to offer acceptable house ventilators. They’ll find yourself spending a whole lot of hundreds of {dollars} for personal nurses to ensure they do not die in a single day. Those that have to be in a nursing house or different well being facility generally should transfer to a different state, removed from their households.
“It appears to be an expectation of insurance coverage firms they need to reside the remainder of their life hooked up to a wall outlet,” says Dr. Tyler Rehbein, who treats ALS sufferers. He says he typically battles insurers to get them to cowl battery-powered ventilators.
Lauren Petracca for KFF Well being Information
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Lauren Petracca for KFF Well being Information
“There usually are not a number of establishments that may handle these individuals,” mentioned Jonathon Schwartz, performing chief medical officer for the Spaulding Rehabilitation Community in Boston.
Solely 347 of the nation’s roughly 14,750 nursing houses have specialised items devoted to individuals on ventilators, a KFF Well being Information evaluation of federal information exhibits. Fifteen states, together with Missouri, haven’t any nursing houses with a specialised unit for ventilator care.
“A horrific feeling”
Whereas nursing houses can take care of residents on ventilators on their common flooring, in apply few do. From April by June 2025, fewer than 10% of nursing houses had long-stay residents respiration with the help of invasive mechanical ventilators, which ship air by a tube down the airway or through a tracheostomy, the evaluation discovered. Fewer than 15% of nursing houses had short-stay sufferers on ventilators.
Many sufferers in nursing houses could be weaned off ventilators, however those that cannot due to their situation typically spend years in hospitals, which aren’t designed for residency. Revolutionary options to conventional nursing houses exist in some areas of the nation, however they have not been broadly replicated and now are in danger from steep reductions in Medicaid enacted by President Donald Trump and the Republican-controlled Congress.
“It may create a horrible state of affairs,” mentioned Gene Gantt, a respiratory care guide to states and insurers.
Iron lungs are the precursor to immediately’s ventilators, developed to deal with polio sufferers. These two iron lungs from the Nineteen Thirties are a part of a group owned by Gene Gantt, a respiratory care guide.
Donna Gantt
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Donna Gantt
Many individuals completely on ventilators desire to reside at house so long as they’ll. However care there could be perilous and dear. Some state well being packages pay for ventilator take care of low-income sufferers, however getting enrolled can take months amid bureaucratic hurdles and waitlists.
Some insurers balk at offering superior house ventilators — which might price greater than $10,000— till sufferers have misplaced a lot of their means to breathe. However the costly fashions are considerably higher than different choices; they sound alerts for collapsed lungs, airway leaks and different malfunctions.
“Feeling you are suffocating is a horrific feeling, and that feeling can go on for months and months” as ALS sufferers decline whereas sparring with insurers, mentioned Tyler Rehbein, an assistant professor of neurology on the College of Rochester who treats ALS sufferers.
“Out of cash”
David Goldstein’s first symptom of ALS was a limp that appeared within the fall of 2022. It took six months for docs to diagnose him with the neuromuscular dysfunction, also called Lou Gehrig’s Illness. ALS afflicts about 34,000 Individuals, destroying the nerve cells within the mind and spinal wire that management muscular tissues, together with these for respiration. It will definitely leads to full paralysis, whereas most individuals stay mentally alert. Sufferers often find yourself on ventilators if they don’t die first, and respiratory failure is the commonest reason behind loss of life.
Now 69 and on a ventilator, Goldstein can’t transfer something besides his eyes and mouth, mentioned his ex-wife, Janis Goldstein, who has energy of legal professional. He requires somebody round on a regular basis in his Houston house to feed and bathe him, give him treatment, and take away mucus blocking his airway. The settings on the ventilator require frequent monitoring and changes.
In spring of 2023, Goldstein received on the ready record for Texas’ Medicaid house well being program for disabled adults. Greater than a 12 months later, Texas licensed 12 hours of house care a day. Nonetheless, Janis mentioned, the state’s designated administrator generally has hassle getting staff for these shifts, and she or he and her ex-husband should pay for nurses to cowl the remainder of the day or evening.
She mentioned they’ve spent round a half-million {dollars}, largely on nurses and aides. They raised a lot of it by on-line campaigns and a fundraiser headlined by the nation singer Larry Gatlin.
“The purpose that we’re at now, with the 24-hour assist, is we’re just about out of cash,” Janis Goldstein mentioned.
She is planning to maneuver David into one of many few nursing houses within the area that take sufferers on ventilators, she mentioned, however is anxious will probably be troublesome to rearrange for somebody to stick with David in a single day in his room. She fears that if David’s place shifts even a half- inch, he will not have the ability to name for assist by the machine that tracks his eye actions.
“I do not know that he’ll have the ability to deal with the stress and the anxiousness of figuring out that he may suffocate, even in a facility, as a result of he does not have somebody by his facet,” she mentioned.
Ventilator deserts
When Michael DiPlacido’s son Adam spent weeks trying to find a facility in Missouri that would maintain a affected person on a ventilator with a trach tube, the one one which was even a risk informed him it could not settle for new sufferers, as a result of its lone respiratory therapist had stop.
“It is unimaginable to me there’s not one single place in Missouri that may take a affected person like my father,” Adam mentioned.
Wanting outdoors the state, Michael determined to maneuver to a nursing house north of Chicago, about 5 hours by automotive from St. Louis. After three months, he left the ability as a result of it was so distant from his household, Adam mentioned.
Adam helped his father transfer right into a long-term care hospital in suburban St. Louis for six weeks. However Michael’s insurer wouldn’t pay for hospital-level acute care, so Adam mentioned Michael needed to pay greater than $47,000 out-of-pocket. Subsequent, Adam helped him transfer to a different Illinois nursing house, about an hour away, that his son had initially rejected due to on-line critiques, together with a Medicare warning that abuse had occurred. Discovering it poor, Michael left after per week.
Adam discovered a non-public nursing house firm that may take care of Michael in his house, at a price of $960 a day. “After 323 days, my father has lastly made it again house,” Adam mentioned in an e mail in September.
However along with his well being quickly deteriorating, Michael was admitted to a hospice facility in October. He died later that month at 75.
Nursing house issues
Gantt, the respiratory care guide, mentioned that lower than half of state Medicaid packages present enough reimbursement charges for ventilator sufferers. He mentioned most state Medicaid cost formulation don’t measure outcomes or reward nursing houses financially if they supply higher care, resembling weaning a affected person off the ventilator or stopping infections. He mentioned he has seen nursing houses settle for sufferers with trach tubes even when nurses lack correct coaching, or when the ability does not make use of respiratory therapists.
“For the big half, these sufferers are caught in mattress,” Gantt mentioned. “We must always attempt to get them the highest quality of life.”
David Gifford, the chief medical officer for the American Well being Care Affiliation, a nursing house commerce group, mentioned equipping a nursing house with ventilators and getting state approval is pricey, and outdoors of city areas, many markets lack sufficient native sufferers who want ventilators to make it financially worthwhile.
“It is not so simple as saying we will pay extra and have extra respiratory therapists,” Gifford mentioned. “It is a group that wants extremely specialised care. You are not going to have it in every single place.”
Flagging breaths
Derek McManus’ weakening proper hand and occasional twitching was the primary signal one thing was flawed. In October 2023, docs recognized McManus, a company govt who lives in Painted Put up, New York, with ALS.
By August 2024, McManus’ lungs had been working at 78% of capability, his medical data present. As a result of ALS progresses so rapidly, docs typically prescribe superior house mechanical ventilators. These machines ship high-pressure air by a masks (referred to as non-invasive) or a tube down the airway or through a tracheostomy (referred to as invasive). They’ll calibrate themselves primarily based on a affected person’s respiration and have alarms that detect leaks, airway blockages, and gadget malfunctions. They’ll run on transportable energy sources and backup batteries in case of an influence failure. The machines can enable individuals to speak or eat.
Residence mechanical ventilators have transportable energy sources and alarms that detect airway blockages, leaks, and gadget malfunctions. Physicians who deal with ALS sufferers say insurers are sometimes insist sufferers “fail first” on widespread C-PAP machines earlier than they are going to cowl the house vents.
Lauren Petracca for KFF Well being Information
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Lauren Petracca for KFF Well being Information
However some insurers have what physicians name “fail first” insurance policies that will not pay for ventilators except the affected person has already tried a respiratory help gadget with out success (as outlined by the corporate). These easier machines, the sort sleep apnea sufferers use, usually are not as efficient in eradicating carbon dioxide as ventilators and lack security options. Generally recognized by the acronyms BiPAP or CPAP, they’ll price $1,000 or extra and have to be plugged into {an electrical} socket.
Lesley McManus inserts components right into a feeding tube for her husband, Derek, who has ALS, at their house in Painted Put up, New York.
Lauren Petracca for KFF Well being
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Lauren Petracca for KFF Well being
“It appears to be an expectation of insurance coverage firms they need to reside the remainder of their life hooked up to a wall outlet,” mentioned Rehbein, the College of Rochester neurologist.
Repeated denials
In November 2024, McManus’ insurer denied his doctor’s request for a ventilator, writing that “you haven’t failed therapy” with the easier gadget, based on the insurer’s letter, offered by his spouse, Lesley McManus. By April, Derek’s respiration capability had dropped to 60% of regular. Lesley mentioned she anxious he would suffocate in a single day if his primary gadget stopped working, because it had no security alert. “He could not take the masks off, as a result of he cannot transfer his fingers,” she mentioned.
Lesley McManus feared her husband, Derek, would suffocate in a single day if the respiratory help gadget their insurer first licensed stopped working.
Lauren Petracca for KFF Well being Information
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Lauren Petracca for KFF Well being Information
The insurer denied a second request for a ventilator, reiterating that Derek had not proven the easier machine hadn’t labored, based on one other insurance coverage letter. Derek, who’s 56, appealed to an impartial medical reviewer, who overturned the insurer’s resolution and ordered it to offer a ventilator, based on a duplicate of the ruling. The physician wrote that the machine’s alarm system and capability to mechanically clear away airway secretion by simulating a cough had been “important for affected person security” and would assist defend Derek from growing pneumonia.
“This multi-faceted strategy to respiratory care is crucial for enhancing gasoline alternate, decreasing the work of respiration, and in the end enhancing the affected person’s high quality of life and increasing survival,” the choice mentioned.
McManus mentioned that since he received the brand new machine, he is respiration simpler, actually and emotionally. “If I am not respiration proper, it’ll give it an alert, and it’ll tell us if I haven’t got the masks on correctly,” he mentioned.
The McManus household requested KFF Well being Information not publish their insurer’s title, out of worry of repercussions.
Insurance coverage guidelines
John Hansen-Flaschen, a pulmonologist who based Penn Medication’s program for house assisted air flow, mentioned some sufferers hand over when an insurer denies their requests and do not file appeals. “These are a number of the most weak individuals there are, they usually do not have vitality to do that,” he mentioned.
Docs who deal with sufferers with neuromuscular problems mentioned essentially the most resistance to offering ventilators comes from some personal Medicare Benefit plans, however they mentioned it additionally has been a difficulty with some business insurance policies.
Insurers dispute that they refuse ventilators for sufferers who want them. The written coverage of Excellus BlueCross BlueShield, which Rehbein mentioned was one of many firms that covers his sufferers, requires easier respiration machines to have failed earlier than sufferers can get the extra refined ventilator. After a KFF Well being Information inquiry, Excellus clarified its coverage with a footnote saying it does take into account mechanical ventilators as first-line remedy for sure conditions, resembling ALS, on a case-by-case foundation.
UnitedHealthcare confirmed that a few of its insurance policies require {that a} much less advanced gadget be tried initially and located ineffective earlier than a ventilator could be licensed. Aetna’s coverage does not mandate a stepped course of and says it considers mechanical ventilators primarily based on the severity of the situation and “the place interruption or failure of respiratory assist would result in loss of life,” with different sufferers eligible just for the easier units. Humana and Cigna didn’t reply to requests to offer their insurance policies.
Chris Bond, a spokesperson for AHIP, the medical insurance trade’s commerce group, mentioned, “Well being plans work to attach sufferers with secure, clinically acceptable care and welcome alternatives to work with policymakers and stakeholders throughout the well being care system to repeatedly enhance entry and exactly tackle any coverage-related points.”
Melanie Lendnal, senior vp for coverage and advocacy on the ALS Affiliation, mentioned, “I have never met one particular person but residing with ALS, or a member of the family, who has not needed to battle — actually battle — to get a non-invasive ventilator.”
A mannequin in Massachusetts
In 2019, David Marion, a 36-year-old plumber, was hanging out with mates in Lowell, Mass., when he tripped on the sidewalk and fractured his neck. The harm rendered him quadriplegic and paralyzed his stomach and diaphragm muscular tissues, requiring him to make use of a ventilator. Surgeons carried out a tracheotomy, and over the following 12 months and a half, Marion lived in two long-term acute care hospitals. “I did not get off the bed” on the second hospital, David, now 43, mentioned in an interview.
His mom, Denise Valliere, who lives in New Hampshire, mentioned she grew determined looking for a everlasting house for him that was shut sufficient that she may go to. “A few of these nursing houses are fairly unhappy locations,” she mentioned.
On the finish of 2020, Marion’s luck turned. He was accepted by the Leonard Florence Heart for Dwelling in Chelsea, Mass., which has created a substitute for the institutional life most nursing houses can provide individuals on ventilators. The middle follows the Inexperienced Home philosophy, with small residences every serving 10 individuals, with personal bedrooms, a typical front room, and outside house. Residents set their very own schedules, together with when and what to eat. The middle has 10 residences in its constructing; six are devoted to individuals depending on ventilators, together with these with ALS or MS.
The middle’s respiratory therapists helped Marion get to the purpose the place he did not want a feeding tube and did not require his ventilator for parts of the day. The middle offered a conveyable ventilator hooked up to his wheelchair and a pc pill that Marion operates along with his mouth. It permits him to summon the elevator, open doorways, go outdoors, and regulate his mattress, window shades, temperature, and tv settings. Different residents who cannot use their fingers or mouths can function the units by a digital camera that captures eye motion.
A pc pill display screen individuals with respiratory paralysis can function with their mouths or eye actions to open doorways, name elevators, and regulate the lights, shades, temperature, and TV of their rooms. Residents of the Leonard Florence Heart for Dwelling in Chelsea, Mass., have entry to the know-how.
Steve Saling
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Steve Saling
“This offers again independence to individuals who by no means thought they’d have independence once more,” mentioned Barry Berman, the chief govt officer of Chelsea Jewish Lifecare, the nonprofit that owns the Leonard Florence Heart. “There are options. It does not must be the way in which that it’s.”
Many of the residents’ stays are paid for by Medicaid, which along with Medicare offers the majority of the middle’s income. Its funds are bolstered by the nonprofit’s endowment, one thing most nursing houses lack. Berman mentioned that for the reason that middle opened in 2010, he has hosted dozens of tourists considering replicating its mannequin elsewhere within the nation, however nobody has.
Alternate options in danger
Some states have licensed amenities that are not nursing houses to take care of individuals on ventilators. In California, some individuals on ventilators reside in “congregate residing well being amenities,” that are residential homes that present 24-hour expert nursing for the terminally ailing, people who find themselves catastrophically or severely disabled, or people who find themselves mentally alert however bodily disabled.
Sufferers typically should pay privately as a result of Medicaid managed care packages do not embrace these amenities as a profit, mentioned Mariam Voskanyan, who’s president of the state affiliation representing congregate residing amenities and owns one in Los Angeles. California’s Medi-Cal program is permitted to pay these sorts of amenities by its Residence and Group-Based mostly Alternate options waiver, however this system is at capability and there’s a waitlist of greater than 5,000 individuals.
Researchers anticipate states will likely be beneath stress to cut back or get rid of packages like these to make up for practically $900 billion in coming Medicaid reductions, for the reason that federal authorities doesn’t require states to cowl respiratory take care of individuals on ventilators or nursing house options.
Denise Valliere mentioned she was baffled that there have been no more locations like Leonard Florence. “How can we be so behind in that form of care and people sorts of amenities if we’re the perfect nation on the planet,” she requested. “Why is that this?”
KFF Well being Information is a nationwide newsroom that produces in-depth journalism about well being points and is likely one of the core working packages at KFF — the impartial supply for well being coverage analysis, polling, and journalism.
