The Price of Life: The battle with health providers to keep their loved ones alive

Yahoo

30-04-2025

NEW HAVEN, Conn. (WTNH) — Tackling the rising cost of health care can certainly put a financial strain on families. The emotional toll can be devastating when unexpected denials from health insurance policies pile up.
In a News 8 special report, two separate families fighting to keep their loved ones alive shared their ongoing battle with health care providers. For them, the experience has sparked a major question: Who decides the price of life?
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The ruthless crime startled the nation and has spotlighted the health care system.
'I think we were all surprised at the public reaction, and it's something I think that those of us who deal in this world of helping people have recognized that there is a lot of frustration,' said Kathy Holt, the State of Connecticut Healthcare Advocate (OHA).
Holt said the Connecticut OHA receives roughly 5,000 consumer calls a year, 40% of which are related to healthcare coverage 'and things we can resolve before something is denied.'
Ethan Takacs is among those cases. The 19-year-old lives with spinal muscular atrophy, a degenerative condition similar to amyotrophic lateral sclerosis, more widely known as ALS.
'We were told to take him home, love him a lot, take a lot of pictures, and he most likely would die by the age of 1, maybe 2,' his mother, Kelly Greenwood, said.
Takacs has surpassed his life expectancy nearly 20 times over, with his birthday this June. The family says he requires around-the-clock attention and can't walk, talk or breathe on his own. Inside Greenwood's home, Ethan is on a bed with several pieces of equipment around him, including a ventilator, feeding tube and other machines used to clear him of congestion.
His mother tells News 8 her son's condition has declined over the years. In 2022, Takacs had to get a tracheostomy due to respiratory failure.
'Even with all those losses, he's still here,' Takacs's father, Jason, said. 'And one of those reasons is because of the women that help us take care of him.'
Bernadette Gillot-Lamousnery is a nurse who has provided in-home care to Takacs for nearly 19 years.
'I would say I know Ethan more than my own children,' she told News 8.
The family says the two have a special bond that has given Takacs the will to live. With Gillot-Lamousnery's long-term support, he has been able to celebrate key milestones, including having friends, graduating from school, and being a die-hard Yankees fan.
Anthem Blue Cross and Blue Shield have covered Takacs's in-home nursing care for the duration of his life and have been funded through his father's career as a detective for the Fairfield police. The plan included Lamousnery's private duty nursing with AAA Nursing Care. The family tells News 8 that private nursing is critical to Ethan's survival as he has very specific and 'complex medical needs' requiring attention 24/7.
Last March, the family said they were notified about a pay issue with AAA Nursing, with the company saying it was not getting paid its previously negotiated and approved rate. Then, in November, Jason says he was notified that his son no longer qualified for care altogether and that coverage would come to an end in April. A letter the family provided from Anthem deemed the services 'not medically necessary.'
When asked if his son looks stable, Jason said, 'He's essentially on life support every day,' adding, 'If he doesn't qualify, who does qualify?'
As for Ethan's mother, Kelly, she views the denial as 'for me to hear they want to take them away to me says they want to basically take away his existence…that's very hard to hear someone say that about my child.'
The company reversed its decision after appealing through the state's Office of the Healthcare Advocate.
Anthem Blue Cross and Blue Shield sent the following response to News 8 in a statement:
'Anthem Blue Cross and Blue Shield is committed to providing members with access to safe, effective, and clinically appropriate medical care. Our medical coverage decisions are guided by a rigorous, transparent, and evidence-based process focused solely on clinical merit and member benefits. AAA Nursing is an out-of-network provider for Anthem and our single case agreement with them for Ethan's care recently expired. As part of our normal process for reviewing authorizations for care, we determined his condition remained stable and he could transition to a maintenance level of support. After further reviewing Ethan's case and recent clinical notes, and recognizing the potential disruption to Ethan's care with a change in a different level of support at this time, we reversed our initial decision and approved the continuation of his private duty nursing care through the end of the year. However, the Town of Fairfield recently informed us that it is changing insurance carriers effective July 1, 2025. Due to this change, Anthem's approval will extend through the end of June. Effective July 1, 2025, benefits for care received by Ethan on and after that date will be the responsibility of the new insurance carrier.'
The Town of Fairfield confirmed to News 8 that it 'intends to switch health plans July 1, 2025,' once again adding to the uncertainty over Takacs's in-home nursing care.
Ethan's father tells News 8 the estimated out-of-pocket cost for his son's monthly care would be roughly $30,000.
The battle with healthcare insurance companies is all too familiar to the Schipani family.
Like Ethan, their 36-year-old son, Taylor, lives with a host of severe conditions, including cerebral palsy, seizure disorder and respiratory complications. He also has precise and complex medical needs, requiring suctioning multiple times a day and the use of a feeding tube. His father, Steve, tells News 8 he gets 8-12 cases of pneumonia annually. While Taylor was born with CP, his condition became much worse after a surgery in 2001 went wrong.
'He had spinal fusion because he had some curvature, and we were having issues with his eating. He was getting a lot of aspiration pneumonia from it, so we had the spinal fusion. Long story short, it went really badly,' Steve Schipani said.
Steve says their provider, Quantum Health, has been trying to terminate his son's coverage since 2023.
'They just want you to give up and go away,' Steve Schipani told News 8. 'They feel like it's just not worth trying to keep him alive.'
Every six months, when Taylor's coverage is about to end, a frustrating notice arrives, alerting them that the family services will not be renewed.
One of the denial letters the family received from Quantum Health provided to News 8 states, 'The medical plan does not cover room, board, nursing care or personal care, which is rendered to assist a covered person who, in Quantum Health's opinion, has reached the maximum level of physical or mental function and will not make further significant improvement.'
Steve says the company's conclusion highlights a frustrating paradox families like his face, where their loved ones can be denied for either being too ill or for making progress due to the care they've received.
'If the doctor says one visit, 'oh he's making good progress on his whatever,' all of a sudden that is a red flag to them that they can say, 'hey, we're not going to cover you,'' he said.
'There needs to be a stop on how many times an insurance company can do this,' said Taylor's mother, Pam. 'His life is worth something and I wish these people who work in insurance understood that. I wish they came to our house and met him and saw the joy he has, the joy he gives us. If you don't care for him, that won't be here any longer. He won't be here any longer.'
News 8 reached out to Quantum Health multiple times for comment but did not get a response. We also reached out to Anthem, as a number of appeal and denial documents provided by the Schipanis show they were sent from the provider. Steve says Quantum has been managing Taylor's case, while Anthem is responsible for paying claims.
When asked about the relationship between Quantum and Anthem and the company's involvement with Taylor's case, Anthem provided the following response:
'Quantum Health is not affiliated with or part of Anthem Blue Cross and Blue Shield. For the State of Connecticut health plan and the State of Connecticut Partnership Plan (municipalities that are covered under the state plan), Quantum Health was contracted by the state to provide customer service, utilization management, and case management services. Anthem is separately contracted by the state in these programs as the benefits administrator to manage the provider network and pay claims. Under these programs, Anthem would pay claims based on Quantum Health's decisions regarding approvals or denials of care.'
The Schipanis have filed multiple appeals since Taylor started getting denial notices in 2023. So far, the family has won each time. However, Taylor's father says there have been issues getting claims paid from Anthem, so the family filed a complaint with the state's Insurance Department Consumer Affairs Division. Steve says the grievance helped resolve the matter.
Based on his experience filing multiple appeals, Steve provided advice for families in similar situations. He says the process involves multiple appeals for each incident.
'Most people give up after the first rejection or denial,' he said. 'An even larger percentage give up after the second appeal. You have to get to the third appeal, which is the appeal that leaves the insurance company and goes to an outside reviewer made up of medical personnel,' adding this is the most crucial appeal level if families want a chance to succeed because it looks at the medical components of the case.
He also advises against families appealing on their own.
'Even a conversation with the provider can be considered an appeal,' Steve said. 'Getting the correct info to the provider is the key to success and sets a precedent for future appeals.'
The Connecticut Office of the Healthcare Advocate says that statistically, only about 1% of people appeal their case. Eighty percent of the time, those who appeal win until the next denial notice comes in the mail. The OHA says the appeal process can be long and exhausting.
'Some insurers have five levels of review. When you talk about Medicare, you can be denied and denied and denied again,' Holt said. 'The impact of not covering something is much bigger than just the singular individual who has to fight, and when you don't feel well when you're sick, fighting is even more difficult.'
Holt is calling for legislative reform on the issue.
'They shouldn't have to constantly battle and constantly be denied and have to be re-approved. Once something's been approved, there should be a precedent to continue that authorization,' she told News 8.
Holt says anyone looking for support in appealing coverage denial can contact the Connecticut Office of the Healthcare Advocate at 1-866-466-4446 or click here for more.
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