Julia Rion: Living With Chronic Illness and Constant Financial Fear

Julia Rion has lived with Crohn’s disease, an autoimmune condition, since she was 11 years old. After years in remission, her symptoms began to flare up again, becoming more difficult to manage. The timing was hard to ignore — while her condition worsened, Julia turned 26 and aged out of her parent’s insurance coverage. For the first time, she had to navigate the costs of managing her care on her own insurance, and quickly realized how expensive having a chronic illness could be.

As a landscape architect, Julia received health insurance through her employer, who covered nearly all of her monthly premium. Even so, the plan still left her responsible for significant out-of-pocket costs. Between copays, prescriptions and other medical expenses, Julia spent between $500 and $1,000 each month on her care. Because Crohn’s disease requires ongoing treatment, delaying or skipping care is not a realistic option when costs become overwhelming. Some of the biologic medications she relies on cost thousands of dollars per month before insurance, including one medication, Rinvoq, priced at approximately $12,000 per month. Because of this, Julia accumulated about $5,000 in medical debt in just one year.

Although she could pay off the remaining balance using her savings, doing so would leave her without a financial cushion if another flare or unexpected medical bill occurred. “I technically could pay this bill right now, but then if something happens again in a few months, how am I going to pay rent?” she said.

Debt collectors continue to call, asking for payment, but Julia says, “I’m trying not to think about it because there’s nothing I can do.” She added, “I feel like I have to live below my means, just in case I’m hit with a huge medical bill. It’s frustrating to see my friends spend their money on fun things while I have to spend mine on medical care.”

When Julia lost her job in March, she lost more than a paycheck — she also lost the coverage she relied on to manage her condition. Fortunately, because she lives in New York, she qualified for Medicaid expansion coverage, allowing her to continue receiving the care she needs without the same level of financial strain. “I don’t know what I would do without it,” Julia said.

Medicaid did not erase the medical debt Julia had already accumulated, but it eased the financial burden of managing her condition. “I’m super thankful that I’m able to be on it,” Julia said. “It lifts so much stress off my shoulders.”

Experiencing both employer-sponsored coverage and Medicaid changed how Julia thinks about health coverage. “It makes me even more angry. I’m like, wow, everybody should have access to this.”

The financial uncertainty has shaped how Julia thinks about her future. She and her partner have even discussed moving out of the country, in part because of the cost of health care. At 27, Julia worries about what decades of living with a chronic illness will mean for her financial future. “I don’t know what people have been chronically ill for like 20 years on their own health insurance. I can’t imagine what the potential medical debt is.”

Today, Julia is grateful Medicaid has provided the stability she needed to manage her condition without the same financial stress she experienced before. “People don’t want to be sick. People don’t ask to be sick,” she said. “People shouldn’t have to suffer and frankly die because they can’t afford medical care.”

For Julia, affordable health coverage has meant more than financial relief. It has meant being able to manage her Crohn’s disease without constantly worrying about how she will pay for the care she needs. Her experience shows that having health insurance is not enough if people still cannot afford to use it.