For Breana Dion, the struggle to secure essential healthcare for her immunocompromised daughter, Kamila, has been a relentless battle. The termination of Medicaid coverage and subsequent denials from Florida Healthy Kids Corp. have left this single mother feeling abandoned by the system she once trusted.

Facing Uncertainty with Courage and Determination

A Sudden Shift in Healthcare Coverage

In 2023, as the United States emerged from the pandemic’s shadow, states began reassessing Medicaid eligibility. For thousands of children with complex medical needs, this shift meant losing their lifeline—Medicaid Children’s Medical Services (CMS). Kamila, a six-year-old with a fragile immune system, was one such child abruptly removed from CMS. The official notification arrived two days after her coverage had already lapsed, leaving her family scrambling to understand what had happened.Kamila’s journey began under challenging circumstances. Born without a cry or heartbeat, she required immediate resuscitation. In the early months, her mother, Breana Dion, constantly monitored her breathing, fearing each moment could be Kamila’s last. Diagnosed with obstructive sleep apnea and a pediatric feeding disorder by her first birthday, Kamila’s health issues only compounded over time. Conditions like tracheobronchomalacia and hypogammaglobulinemia further complicated her care, making her susceptible to severe infections that could lead to sepsis.

The Price of Survival

The specialized equipment surrounding Kamila’s home tells the story of her daily battles. From nebulizers to CPAP machines, every device plays a crucial role in maintaining her health. Among these essentials is Lukah, her service dog, named after a character from a Disney movie that inspired her speech development. Yet, nothing compares to the weekly infusions of immunoglobulins, which cost $15,000 per dose, totaling over $700,000 annually. These infusions are vital; without them, Kamila’s immune system cannot function properly.Initially, Kamila’s needs were covered by CMS. However, changes in Breana’s employment status and procedural errors led to her daughter’s disenrollment. The transition to Florida Healthy Kids Corp., managed by private insurers Simply Healthcare Plans and Aetna, proved disastrous. Numerous denials followed, including the critical denial of Kamila’s life-saving infusions. Simply Healthcare cited “high cost” and deemed the treatment “not medically necessary,” despite clear evidence to the contrary.

Navigating a Broken System

Breana found herself navigating a labyrinthine appeals process, often hitting dead ends. According to the Florida Agency for Health Care Administration, “medically necessary” services should protect life or prevent significant illness, with no less-costly alternatives available. Yet, Kamila’s case was repeatedly denied, leaving Breana questioning the criteria used by insurers. Industry experts suggest that determinations of medical necessity can be subjective, influenced by financial considerations rather than patient needs.Despite the odds, Kamila’s doctors fought tirelessly, securing temporary approval for her infusions. However, this was not a permanent solution. The intermittent lapses in coverage forced Kamila into periods of isolation, reminiscent of the strict lockdowns during the pandemic. Each break in her treatment regimen weakened her immune system, leading to hospitalizations and exacerbating her condition. This instability ultimately resulted in Breana losing her job, requalifying Kamila for CMS coverage in February 2024.

Looking Toward an Uncertain Future

The experience has left Breana wary of future uncertainties. She worries about the long-term implications of potential gaps in coverage and the challenges of advocating for Kamila’s needs. While she contemplates relocating to a state with more robust resources, practical constraints make this option difficult. For now, Breana focuses on providing Kamila with stability, happiness, and safety. Through it all, she remains determined to ensure her daughter receives the care she deserves, even if it means fighting against an indifferent system.