This letter features reporting from “Deadly Denials: How Insurers Delay, Restrict, and Deny Care for Eating Disorders” by Melanie Haiken
Content warning: Discussion of disordered eating.
Dear Senator Thom Tillis,
Eating disorders run in my family. I have seen the devastating impact caused by chronic eating disorders. These disorders destroy individuals’ health while they are actively engaged in the disorder, and potentially for the rest of their lives. In “Deadly Denials: How Insurers Delay, Restrict, and Deny Care for Eating Disorders,” Pulitzer Center grantee Melanie Haiken describes the unfair and unjust repeated denials of needed care for individuals with disordered eating. According to the article, eating disorders are the deadliest mental health conditions worldwide, claiming an estimated 10,200 lives each year in the U.S.—one life lost every 52 minutes. Yet, for those seeking treatment, health insurers are creating formidable barriers to care. Because insurers are allowed to provide inadequate care, they directly contribute to this crisis.
The article details how a 10-month investigation by MindSite News uncovered a disturbing trend: many insurers and managed care organizations are limiting access to necessary care for eating disorders, exacerbating the problem of accessing already limited resources. Insurers are denying coverage. Megan H., a patient with severe anorexia, described her struggle: "The battle to get my HMO to approve the treatment I needed was just insurmountable. I was so worn down, I said, 'I’m done with this. I can’t do it anymore.’”
We are losing lives daily, and denial of care has become a public health crisis. Insurers are calling the level of care required for severe cases "inappropriate," and patients on life-sustaining 24-hour feeding tubes are being sent home due to lack of resources. As Beth T. learned when her 14-year-old daughter, Gigi, was abruptly discharged from treatment, “Insurance is done, and you have to pick her up tomorrow.” A mother cannot replace a medical team of specialists.
Unpublished data shared with MindSite News by researchers at the EAT Lab further underscores the severity of this issue. People with public insurance face even greater obstacles than those with private insurance, with 57.6% unable to access qualified care in their network. Furthermore, Latino and Asian youth are half as likely to receive recommended treatment compared to white patients. These disparities are a stark reminder of how mental health is still treated unequally, even when lives are at stake.
Through my own experiences seeking treatment, I have witnessed firsthand the significant barriers that prevent access to proper care. Eating disorders run in my family as a genetic illness, and many of my loved ones have endured these challenges, often facing unjust and avoidable hardships as a result. I have witnessed women who have to give themselves daily injections and pay for the costs of the medicine because they weren’t given the proper treatment when they needed it. I have also witnessed the chronic and debilitating issues and pain caused by improper and neglectful care of an eating disorder. When insurance companies deny care, people suffer. This personal connection has deeply shaped my understanding of the urgent need for reform and compassionate support.
To fix this serious problem, insurance companies need to be responsible for giving quick and full coverage for eating disorder treatments. Laws should make sure insurance covers all necessary and ongoing care, like hospital stays, therapy programs, nutrition help, and mental health services, without unfair delays or denials. We also need more specialists in insurance networks and more funding for public insurance so everyone, especially people from marginalized communities, can get the help they need. Insurance employees should also be trained to understand how serious and complex eating disorders are. These changes would help make sure no one is denied life-saving care.
It is time to recognize that denying care for eating disorders is not just a health issue—it’s a matter of human rights. I urge you to take action and support legislation that ensures access to comprehensive treatment for eating disorders, regardless of insurance or race. No one should be denied the help they need simply because of the insurance they carry or the color of their skin.
Sincerely,
Alli De Marco
Alli De Marco is a 14 year old 8th grade student at Francine Delany. She enjoys challenging herself in English academics, taking a strong interest in writing. She believes in justice for mental health, believing everyone deserves the care they need.
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