Jessica Pineda: Fighting for Price Transparency While Her Symptoms Worsen

Jessica Pineda, a long-time Arizona resident, has spent her life navigating complex health conditions while working hard to support herself and her family. After nearly 20 years in nonprofit work, she was forced to change career paths when COVID-19 shut down her industry. With limited job options, she earned her real estate license, but in the process, she lost employer-sponsored health care coverage. For the first time in her adult life, she relied on Medicaid.

That coverage proved critical. During this period, Jessica began experiencing alarming skin symptoms. She researched tirelessly and pushed her doctors to test for a rare condition. Eventually, she was diagnosed with mycosis fungoides hypopigmented, a form of lymphoma. She began oral and topical chemotherapy, along with light therapy and another topical medication. “Thank God for the insurance at the time,” she said. “There’s no way I would’ve ever been able to afford any of this treatment.”

A few years later, another serious health issue emerged. Jessica developed severe gastrointestinal symptoms and was told she needed both an endoscopy and a colonoscopy. But when the hospital called to confirm the procedure, she received devastating news: she was no longer enrolled in Medicaid. “They’re like, ‘You’re going to have to pay for it, you don’t have insurance anymore.’”

Jessica was able to stay enrolled in Medicaid through the COVID-19 crisis due to a “continuous enrollment” provision, prohibiting states from disenrolling members to ensure coverage during the pandemic. In 2023, when states began a process called “unwinding,” millions of individuals like Jessica were informed they no longer qualified and were kicked off of coverage.

The timing could not have been worse. “When I lost my insurance, I started freaking out because I have some pretty serious diagnoses,” she said. “I was like, how am I going to pay them?” Without coverage, she was forced to delay the procedure.

Jessica eventually secured a salaried job in addition to her real estate work and transitioned onto employer-sponsored coverage. Hoping she was finally back on track, she moved forward with scheduling the long-overdue endoscopy and colonoscopy. By this point, months had passed and the bleeding had worsened.

When the hospital called to confirm the procedure just a week or two beforehand, she learned for the first time that she would be responsible for a facility fee totaling $1,250 for the procedure. “I was not provided any facility fee estimate when the appointment was initially scheduled.” Jessica said. “While I’m glad they called ahead, that was the first time I was informed of the fee. You’re going to tell me you can cover the procedure, but you’re not going to cover the facility?”

For Jessica, who lives paycheck to paycheck, $1,250 is roughly half of her monthly income. “I don’t think people understand that for blue-collar workers, that kind of cost is catastrophic,” she said. “Being hit with that number so close to the procedure left me with no realistic option but to cancel, despite still experiencing bleeding.”

The problem, she said, was not just the dollar amount, but the complete disconnect between scheduling care, understanding the full cost, and being able to make informed decisions. “I have to make decisions based on what I can financially afford,” she said. “And I don’t have time to be wasting.”

When she inquired about her options, Jessica was told she needed to contact her insurer, who advised her to search for a stand-alone facility to avoid the hospital fee. Like many families facing facility fees, she tried to shop around. She contacted ambulatory surgery centers, tracked down which doctors operated at which facilities, and called her insurer to compare prices. But she hit the same wall again and again. “They hit me with the most ridiculous thing, saying ‘We can’t give you a cost estimate.’”

The burden of navigating the system fell entirely on her. “It’s time and energy I shouldn’t have to spend,” she said. “That’s where insurance should be advocating for me.”

Facility fees themselves felt nonsensical. “It’s ludicrous that these fees are separated,” she said. “It’s like buying a burger. I expect the patty, the toppings, everything. I don’t expect just the bun and then tell me how you have to pay for the meat somehow in a different way.”

Even after identifying a potentially cheaper ambulatory surgery center, Jessica still could not obtain a price. She was told she would need to establish care with a new doctor, secure referrals, and undergo preliminary testing before receiving even a ballpark estimate. “I still don’t have a price. I don’t have a ballpark idea,” she said. “So again, I have to prolong this to try to get the cash to be in a financially good place to do it.”

Meanwhile, her symptoms continue to worsen. “I need to have this procedure,” she said. “I don’t know if it’s colon cancer or what it is at this point. It’s raising my stress levels.” With a family history of gastrointestinal disease and her own cancer history, every delay feels more dangerous. “I already have skin cancer, so is it developing into something else?”

Jessica’s experience is not unique. Across the country, patients are blindsided by facility fees that insurers are not required to cover and that providers rarely disclose.  These charges delay necessary care, create financial fear, and push people with serious medical conditions into dangerous waiting periods.

Having grown up utilizing Medicaid due to her mother’s disability, Jessica has seen both systems firsthand. “State-sponsored insurance has its issues,” she said. “But if I had a choice, I’d take that over this private insurance mess any day. It was far cheaper, more straightforward, and I didn’t feel like prices were inflated just because I had insurance.”

She wants policymakers to understand that facility fees are not minor billing details. They are barriers that keep people from receiving lifesaving care. “It’s crazy. It’s frustrating. It’s angering,” she said.”