Stephanie Agoratus, A Mother's Fight for Expedited Care

Stephanie is a college student with a sharp wit, a love for learning, and a medical chart that reads like a novel. She is also a Medicaid beneficiary—and for her family, that coverage has been nothing short of lifesaving.

“Stephanie has five life-threatening conditions—and autism, just to keep it interesting,” says her mother, Lauren. “She’s had a kidney transplant, seizures where she coded, adrenal insufficiency, and severe gastrointestinal and menstrual hemorrhages that have required multiple transfusions.”

Stephanie’s care is complex and constant. She takes medications every two hours, starting at 7:30 a.m. and continuing until 10 p.m. Her regimen includes both intramuscular and subcutaneous injections, and she depends on a regular pharmacy, a specialty pharmacy, and a compounding facility to access the treatments she needs.

She is covered by private insurance under the disabled dependent provision, but Medicaid fills in the critical gaps. “Even though we have what would be considered good private insurance, Medicaid has covered so many things that the primary didn’t,” Lauren explains. “I honestly don’t know how we would have managed without it.”

Stephanie has been hospitalized more than 20 times—all through emergency room admissions. Some stays lasted as long as four months in the ICU. After her transplant, when her parents were taking turns doing four-hour overnight shifts to care for her, Medicaid temporarily covered nighttime nursing so they could sleep. Medicaid also helped with the cost of copays, deductibles, and services that private insurance did not fully fund.

As Stephanie transitioned into part-time college, Medicaid once again played a vital role—covering the nursing care needed to make school attendance possible. She also receives services from the Department of Developmental Disabilities, including respite care, tutoring, a behaviorist, and a counselor. A Medicaid-funded program also provides a Personal Care Assistant to help meet her daily needs.

Stephanie’s home had to be significantly modified due to her medical needs. With support from Medicaid and the Catastrophic Illness in Children Relief Fund, the family installed a whole-house generator for climate control, a hospital-grade air and water filtration system, and a fully accessible bathroom to accommodate her walker, commode, and shower chair.

In December 2022, Stephanie reached a dangerously low hemoglobin level of 8 (well below the transfusion threshold at Children’s Hospital) and a critically low iron level of 5. Her doctors ordered urgent iron infusions. But due to prior authorization delays, her treatment was postponed for over a month. “Even though the doctor’s office marked the request as urgent, it wasn’t treated that way,” Lauren recalls.

As her medical proxy, Lauren began calling the insurance company immediately. She was told they had two weeks to approve the request—even for an urgent case. Despite repeated calls and escalation requests, the authorization wasn’t fast-tracked until she insisted, again and again, that this was time-sensitive and life-threatening. Eventually, the insurer moved the review to a 72-hour window. Still, the approval didn’t come until after business hours on the Friday before a three-day weekend, and Stephanie’s transfusions couldn’t be scheduled until the following week.

During the delay, Stephanie—already medically fragile—became dizzy, lethargic, and nearly ended up hospitalized for what should have been a routine outpatient treatment. “Prior authorization should not be needed when a condition is life-threatening or time-sensitive,” Lauren says. “The system nearly failed her.”

Lauren, who has spent years working as a health care advocate, knew how to navigate the appeals process. But even for her, it was a drawn-out, confusing, and frustrating experience. “I couldn’t help thinking—what happens to patients who don’t know how to push back?”

To make matters worse, Stephanie’s family was incorrectly told that prior authorization was required by both private insurance and Medicaid. In fact, Medicaid follows the lead of the primary plan and does not require its own approval—a detail many families wouldn’t know unless they were deeply familiar with the system.

Stephanie, now in her early 30s, continues to live with five life-threatening conditions that require round-the-clock care and coordination—most of which is managed by Lauren. In addition to overseeing every aspect of her daughter’s care, Lauren devotes her personal and professional life to fighting for better health coverage and a system that works for everyone, not just those who know how to work it.

“It’s not just about the hospital bills—it’s about daily survival,” Lauren says. “This coverage makes it possible for our daughter to live at home, go to college, and have a chance at a life that isn’t defined only by her diagnoses.”