Denied Care, Divided Nation: How America Fails Its Sickest Patients—and the People Fighting Back

Stacy M. Brown Black Press USA Senior National Correspondent

Across America, families are being broken not by illness alone, but by the quiet cruelty of denial letters from insurance companies. Patients in crisis are told their care is not medically necessary. Others learn too late that their coverage has been canceled. The denials come swiftly, the appeals take months, and the system often feels rigged against the very people it was built to protect.

A ProPublica investigation revealed just how devastating those denials can be. In North Carolina, Teressa Sutton-Schulman and her husband, identified as “L” to protect his privacy, endured escalating Mental Health Crises. After two suicide attempts in 11 days, Highmark Blue Cross Blue Shield repeatedly denied payment for psychiatric treatment. Hidden on page seven of a denial letter was a single line about a right to an external review. Desperate, Sutton-Schulman filed for that review. An independent physician overturned the insurer’s decision and forced the company to pay for more than $70,000 in care, ProPublica reported. “Appeal, appeal, appeal, appeal,” said Kaye Pestaina, a Vice President at the Nonprofit Health Policy Group KFF, who has studied external appeals. “That’s all you have,” she told ProPublica.

“Every state needs one of these programs,” said Cheryl Fish-Parcham, Director of Private Coverage at Families USA. “Health Care is so complicated, and people really need experts to turn to,” she told ProPublica. Those experts are often housed in Attorney General Offices, state insurance departments, or nonprofit agencies. Maryland’s Health Education and Advocacy Unit, for example, has been a lifeline for residents struggling with denied care. “The numbers are low because some people just give up. They’re frustrated. They’re tired. They’re battling cancer,” said Kimberly Cammarata, the Unit’s Director. “And sometimes the information about why the claim was denied or about how to appeal is terribly unclear. A lot of these outcome letters will say you have a right to an external appeal, but they don’t exactly tell you where to go,” she told ProPublica.

Still, millions of Americans remain in states without fully funded Consumer Assistance Programs. For those individuals, even knowing that an external appeal exists is a struggle. ProPublica found that the process is buried under jargon, hidden in small print, or placed deep within denial letters that few patients have the time or emotional strength to decode. Experts say one step can make a difference: persistence. “Appeal, appeal, appeal” has become a mantra not only for patients but for advocates who have watched insurers exploit confusion and fatigue to wear people down.

For urgent cases, the law allows expedited reviews that must be resolved within 72 hours. If the independent reviewer overturns the denial, the insurer is required by law to pay. When that happens, the victory is binding. But the system was never designed for easy victories. Most patients never reach that point. Many dies waiting. And yet, despite the exhaustion and the heartbreak, people keep fighting. From North Carolina to California, from New York to Georgia, they continue to challenge billion-dollar corporations that have learned to profit from denial. What unites them is not just the pursuit of care, but a demand for fairness — a demand that too often goes unanswered. “Every state needs one of these programs,” Fish-Parcham said again. “Health Care is so complicated, and people really need experts to turn to.”