CW: Psychiatric Symptoms
The phrase “medical necessity” sounds straightforward. Something that is medically necessary helps someone stay safe and healthy. Unfortunately, insurance companies often disagree with medical professionals. Getting something that is needed is exhausting and frustrating. Instead of being about people, medical necessity is really about budgets.
I’ve experienced this myself. Earlier this year, MassHealth took away my overnight personal care assistant (PCA) hours. On paper, it looked like a small change. In reality, it put my health and safety in jeopardy. I had to fight. I spent months gathering medical records, writing letters, and making phone calls. It was all necessary to prove that my safety matters. It’s exhausting and humiliating to have to fight for the care that helps you sleep safely.
I faced a similar situation with my power wheelchair. Health New England refused to pay for it because I can walk with a walker. It took more than a year from the evaluation to the day it was delivered. Ultimately, they agreed to cover the chair. Sadly, they didn’t cover the seat elevator, something that increases my independence and safety. To them, it was a luxury, but for me, it was essential.
This isn’t just my story. People nationwide struggle with their health insurance. In Georgia, April and Justin Beck’s daughter Emily suddenly changed. She went from a happy kindergartner to struggling with panic and regression. She was ultimately diagnosed with PANS/PANDAS.
Dr. Aravindhan Veerapandiyan at Arkansas Children’s Hospital, recommended IVIG therapy. UnitedHealthcare said no, calling it “not medically necessary,” even as Emily got worse. The Becks fought back, appealed, and gathered proof. Two days before Christmas, their appeal was approved, and Emily started treatment in January 2025.
Peyton Alvarez, 25, suffered a traumatic brain injury in April. His doctors recommended he begin rehabilitation at the Shepherd Center in Atlanta, one of the best places for treating patients with traumatic brain injuries. The hospital accepted him, but UnitedHealthcare denied coverage. No amount of appeals or explanations changed their minds. Shepherd won’t accept out-of-pocket payments for this care.
This is what medical necessity looks like in America: people are forced to fight for the care their doctors say they need, and they are treated like policy numbers instead of human beings. Staying alive is necessary. Having a good quality of life and living with dignity? It often feels optional.
Medical necessity should be focused on the person, not the paperwork. If a medical professional determines that a patient needs something, it should be covered. Until insurance companies have to think about the real impact of their decisions, stories like mine will keep happening.
Sources:
Ashbaugh, Caitlin. “Mother Angry after UnitedHealthcare Deems Traumatic Brain Injury Treatment ‘Not Medically Necessary’ for Son.” KLTV, 26 Aug. 2026, https://www.kltv.com/2026/08/26/mother-angry-after-unitedhealthcare-deems-traumatic-brain-injury-treatment-not-medically-necessary-son/.
Chatlani, Shalina. “States Try to Rein In Health Insurers’ Claim Denials, with Mixed Results.” Stateline, 25 Mar. 2025, https://stateline.org/?p=14584.
Sausser, Lauren. “Sickest Patients Face Insurance Denials Despite Policy Fixes: ‘They Won’t Help Me.’” CBS News, 31 Mar. 2025, https://www.cbsnews.com/news/health-insurance-denials-prior-authorization-policy/.
Wernau, Julie. “Health Insurers Deny 850 Million Claims a Year. The Few …” The Wall Street Journal, Dow Jones & Company, 12 Feb. 2025, https://www.wsj.com/health/healthcare/health-insurance-denials-fight-back-70a1328e.