Five years ago, Nicole Guysi and her husband, Brett, found themselves in financial stress. All of their money was going toward Brett’s treatment for melanoma and to pay for doctor visits as they tried to find a diagnosis for their daughter, Brooke.
“We were still paying his medical bills and then trying to pay her medical bills all at once,” Nicole said.
Then came some good news. Her husband was declared cancer free and doctors finally found a diagnosis for their daughter. It allowed them to know what specific course of treatment she needed.
Brooke’s primary diagnosis is Cohen syndrome, a rare genetic disorder that affects her physical development. It also causes her to have progressive vision loss and weak muscle tone.
At 6 years old, Brooke sees her primary care doctor along with seven different specialists: a geneticist, hematologist, dermatologist, ophthalmologists, gastroenterologist, an orthopedic, and a developmental pediatrician.
She’s also benefiting from an intensive eating program through the Phoenix Children’s Hospital that’s helping her do away with a feeding tube she has had almost all her life.
At first, the family’s private health insurance provided through Brett’s employer covered most of Brooke’s doctor visits. But Nicole and her husband still had to pay out of pocket for co-pays and additional costs not covered by the insurance.
That all changed three years ago when Brooke was approved for the Arizona Long Term Care System, or ALTCS, a health insurance program offered through AHCCCS, which is the state’s version of Medicaid.
ALTCS covers much of what the family’s private insurance doesn’t, which Nicole said has been a big relief for her and her husband.
“It allows us to be a family that doesn’t need assistance like we did before, and it allows Brooke to have the best care that she needs,” she said.
Nicole added that she and her husband no longer have to worry about finding money to pay for unexpected doctor visits or trips to the emergency room whenever Brooke gets sick. Plus, she and her husband were able to dig out of the financial hole they were in. They recently became homeowners and had a son.
“Medicaid allows us to be an independent family because, really, it just provides care for the person who needs it, which is Brooke,” she said. “It allows her to have that care while we continue to be a financially responsible family who is contributing to the economy.”
“And because Brooke receives the care she needs, it allows her to not just survive her diagnosis, but thrive and grow so she can be a contributing member of society,” Nicole added.