The simple act of eating caused Carly Morton unbearable pain. When your doctor says a medical procedure can save your life, but your private insurance refuses to pay, where do you turn?

Health insurance companies like Morton’s, UnitedHealthcare (UHC), know the odds are in their favor when they deny care. Insurers don’t reveal how many claims they refuse to pay, but we know they reject a quarter of a billion claims every year from plans offered through the Affordable Care Act (ACA). Since ACA plans cover less than 5% of the U.S. population, the total number of denials is likely many times higher.

Here is the story of how many insurors break their promises to the insured with a playbook of weasel loopholes. And how People's Action's Care Over Cost campaign made a difference

The story of how a claim denial was fought and won against a health insurance giant with help from the Care Over Cost campaign.

Aija Nemer-Aanerud

Jun 15, 2023

The simple act of eating caused Carly Morton unbearable pain. When your doctor says a medical procedure can save your life, but your private insurance refuses to pay, where do you turn?

Health insurance companies like Morton’s, UnitedHealthcare (UHC), know the odds are in their favor when they deny care. Insurers don’t reveal how many claims they refuse to pay, but we know they reject a quarter of a billion claims every year from plans offered through the Affordable Care Act (ACA). Since ACA plans cover less than 5% of the U.S. population, the total number of denials is likely many times higher.

We also know that fewer than 0.2% of people challenge denials of care, likely because few know they have this right. And since insurers run the appeals process, too, they deny two out of three challenges. 

Private insurers often place impossible requirements on the treatments people need, in order to reduce the amount these companies pay out for bills. 

Even when, as Morton’s doctors say, it’s a matter of life or death. 

Her dilemma led Morton, 29, from Beaver, Pennsylvania, to Care Over Cost, a new campaign from People’s Action Institute that helps people cut through red tape from private health-insurance companies and fight to build a world where everyone gets the care they need, when they need it.

Morton doesn’t remember a time she could eat without pain, nausea, and vomiting, and she has undergone years of misdiagnoses. She relies on nutritional assistance from feeding tubes and the insertion of nutrition directly into her veins, treatments that come with a high risk of deadly septic infections. If nothing is done to address Morton’s condition, according to her doctor, there is a two out of three chance she will die in the next five years.

Morton got a glimmer of hope in November, when she was diagnosed with nMALS, or neurogenic Median Arcuate Ligament Syndrome. This rare condition occurs when a child is born with the diaphragm muscle too close to the blood vessels and nerves that control digestion. Doctors compare the pain this causes to end-stage pancreatic cancer. 

She discovered there is a surgery to correct nMALS and found a surgeon skilled in the complex operation. Then she hit a brick wall: UnitedHealthcare Medicare Advantage, after demanding formal testimony from her surgeon and more than 30 meetings, refused to approve the surgery, and stuck Morton with a $17,000 bill for the diagnostic procedure. 

Care Over Cost volunteers include health-care industry insiders with years of experience. Working with a retired insurance industry lawyer, Morton negotiated her $17,000 bill down to less than $1,000, and People’s Action helped her contact the office of U.S. Sen. Bob Casey, D-Pennsylvania. After a call from Casey’s office, UnitedHealthcare ended months of delays and told Morton she’d get a response within 72 hours. 

Care Over Cost launched a national petition and social media campaign, which drew 2,765 signers within days from across the country who demanded UnitedHealthcare cover Morton’s surgery. 

“You are confused about what business you are in,” said Susan Kirschner from Tucson, Arizona, when she signed the petition. “Either change your name to accurately reflect your greedy priorities, or change your actions to accurately reflect your name.” Brian Powell, from Columbia, South Carolina, got right to the point: “I was thinking about using UnitedHealthcare for my Medicare Advantage. Not any more.” 

Hours after Care Over Cost delivered these signatures to UnitedHealthcare’s chief executive, Andrew Witty, and Dirk McMahon, president of the UnitedHealthcare Group, the insurance company called Morton and told her they’d pay for the surgery to correct her nMALS. UnitedHealthcare also recoded Carly’s diagnostic procedures so her total bill is now $140.

Witty and McMahon, together, are paid over $32 million every year. Each gets more than a million dollars a year in salary, but the bulk of their payouts come in the form of stock awards and stock options, which give health insurance executives the opportunity to cash in as their profits-per-share rise. Over the last 19 years, UnitedHealthcare insiders have traded over $710 billion in the company’s stock. Last August, at the same time UnitedHealthcare was denying Morton’s pleas, McMahon sold nearly $8 million in UHC stock to lock in profits from the rise in the price of shares, which has more than doubled over the past five years.

The $1.4-trillion private insurance industry has created a lobbying group in Washington, called the Partnership for America’s Health Care Future, to protect profits by attempting to halt the growing momentum towards single-payer health care in the U.S. — the solution we need so no one is ever left struggling to get care, like Carly.

We are fighting denials of care by confronting the insurers who are directly responsible. Last November, our members showed up at the corporate headquarters of Elevance/Anthem Blue Cross Blue Shield in Indianapolis to share their stories. This May, we disrupted Elevance’s Investors Day and protested at corporate offices in Missouri, Iowa, Michigan, New York and Illinois. 

“There is no one in this country who is not impacted by the cruelty of our for-profit health-care system,” said Kiah Morris, from People’s Action member group Rights and Democracy in Vermont and New Hampshire, as she described how her husband’s private insurer denied treatments for his cardiac condition. “While they have their profits on the line, we have our lives.”