Across the United States, patients and families are often confronted with insurance denials that delay or prevent critical medical care. Individuals in crisis are told their treatment is not “medically necessary,” or they discover too late that their coverage has been discontinued. While denials can come quickly, appeals can take months, leaving patients feeling that the system is difficult to navigate and sometimes unresponsive to their needs.
A recent investigation by ProPublica highlighted the human impact of these challenges. In North Carolina, Teressa Sutton-Schulman and her husband, identified as ‘L,’ faced repeated denials for psychiatric treatment following two suicide attempts in less than two weeks. Their insurer, Highmark Blue Cross Blue Shield, denied coverage multiple times until Sutton-Schulman filed for an external review—a process briefly mentioned deep within the denial letter. An independent physician later overturned the decision, requiring the company to pay for more than $70,000 in care. “Appeal, appeal, appeal,” said Kaye Pestaina, a vice president at the nonprofit health policy organization KFF. “That’s all you have,” she told ProPublica.
The right to an external appeal, expanded under the Affordable Care Act in 2010, was intended to provide an additional safeguard for patients. But the system remains inconsistent across states. Karen Pollitz, who helped draft the federal regulations, reported that insurance industry lobbying weakened the process. She said only a small portion of denials qualify for external review, and in many cases, insurers are still allowed to select the reviewers. “There are all kinds of ways they could strengthen the laws and regulations to hold health plans more accountable,” she said.
Awareness of these rights also varies. While some states maintain active consumer assistance programs to guide residents through appeals, others do not. About 30 states still operate such programs, often through attorney general offices, insurance departments, or nonprofit agencies. Maryland’s Health Education and Advocacy Unit has helped many residents navigate these complex systems. “The numbers are low because some people just give up,” said Kimberly Cammarata, the unit’s director. “They’re frustrated, they’re tired, and they’re battling serious illness.”
In New York, the Community Service Society runs a similar program, providing direct help with writing and filing appeals. “We can help people write their appeals,” said Elisabeth Benjamin, vice president of health initiatives. “Sometimes that means going through thousands of pages of medical records and writing lengthy summaries.”
Across the country, agencies like the California Department of Insurance, the Georgia Office of Insurance and Fire Safety Commissioner, and similar departments in Illinois, Pennsylvania, and Virginia maintain hotlines and ombudsman offices to assist consumers. Still, millions of Americans live in states without such resources, leaving them with little guidance or support.
Experts say persistence remains key. “Appeal, appeal, appeal,” has become a common refrain among advocates who warn that many patients abandon the process out of fatigue or confusion. For urgent cases, the law allows expedited reviews that must be completed within 72 hours, and when an external reviewer overturns a denial, insurers are legally obligated to cover the treatment.
Although the process can be frustrating and slow, patient advocates emphasize that change is possible through awareness, persistence, and continued pressure on lawmakers and insurers to make the system more transparent. “Every state needs one of these programs,” said Cheryl Fish-Parcham of Families U.S.A. “Health care is so complicated, and people really need experts to turn to.”
