By 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.
The right to an external appeal was expanded by the Affordable Care Act in 2010, but the protections are uneven. Karen Pollitz, who helped draft the federal regulations under the Obama administration, told ProPublica that insurance lobbyists weakened the process. She said only a fraction of denials are eligible for external review and, in most cases, insurers still choose the reviewers who decide the fate of patients’ appeals. “There are all kinds of ways they could strengthen the laws and the regulations to hold health plans more accountable,” she said. Even when laws exist, few Americans know where to turn. That is why state-based consumer assistance programs, established under the Affordable Care Act, have become a vital safety net — though many states never created them, and others have defunded theirs. About 30 states still operate programs that guide patients through internal and external appeals, while the rest leave families largely alone.
“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.
In New York, the Community Service Society operates a similar program, where advocates draft detailed appeals on behalf of patients. “We can help people write their appeals,” said Elisabeth Benjamin, vice president of health initiatives at the Community Service Society. “We write appeals for them, sometimes going through thousands of pages of medical records and writing 15- to 20-page appeals,” she told ProPublica. Across the nation, CMS documents show an uneven patchwork of help. In California, consumers can call the Department of Insurance Ombudsman at 1-800-927-4357 for help with denied claims. In Georgia, the Office of Insurance and Fire Safety Commissioner fields appeals and complaints from residents at 1-800-656-2298. In Illinois, the Department of Insurance maintains a consumer hotline at 1-866-445-5364. New York’s Department of Financial Services handles cases through its consumer division, while Pennsylvania residents can reach the state Insurance Department at 1-877-881-6388. Maryland, Virginia, and the District of Columbia all continue to run active programs through their respective attorney general or ombudsman offices.
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 die 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.”
