Heidi P.: Searching for a Diagnosis Her Family Can't Afford

Heidi P. is trying to find out what is making her sick. But every step toward an answer is costing her family money they may not have.

For the past year, worsening neurological symptoms have kept Heidi out of work and disrupted her life with her young children. She has seen specialists, undergone tests and tried treatments, including two IVIG infusions that left her with a bill she is still working to resolve.

She still doesn’t know what is wrong.

Heidi’s struggles with the health care system began years before her neurological symptoms worsened. She repeatedly asked doctors for more help understanding what was happening with her health, but she shared she often felt her concerns were not taken seriously.

In 2024, her symptoms began to worsen rapidly. Doctors initially diagnosed her with young-onset Parkinson’s disease. But as her condition progressed, laboratory results continued to come back abnormal. Eventually, her doctors began questioning whether Parkinson’s explained everything.

As they investigated whether an autoimmune condition could be contributing to her symptoms, Heidi’s movement disorder specialist recommended intravenous immunoglobulin, or IVIG. Heidi was scheduled to receive five infusions. She received two before having a severe reaction that forced her to stop treatment.

The bill for those two infusions was nearly $8,000.

Heidi said she was not told beforehand how much the treatment would cost. Her insurance processed the claim and covered what it determined was its responsibility, leaving Heidi with the rest.

The family’s health insurance comes through her husband’s employer. They pay $809.84 every two weeks in premiums and have a $5,500 deductible per person and a $10,000 out-of-pocket maximum. By the time the IVIG bill arrived, the family had already met its out-of-pocket maximum, Heidi shared, though they had not yet paid all of their outstanding medical bills. The out-of-pocket maximum does not include their pharmacy coverage. “Had I even completed that first round of five infusions, we would be bankrupt,” Heidi said.

Heidi had already spent thousands of dollars in copayments seeing specialists as she searched for an explanation for her symptoms.

Now, she is waiting to find out whether the hospital will help absorb some of the cost of the infusions, while her doctors consider what treatment might come next. But Heidi does not yet know what that treatment will cost. “If the IVIG alone was that much money, what are we supposed to do?” she said. “I have to make a choice.”

That choice looms as Heidi manages symptoms that have made even ordinary days unpredictable.

She experiences severe fatigue, and some days she has fevers, shaking and trembling that make it difficult to function. “Some days I feel like I’m okay and I do something, then I’m down for several days at a time,” she said.

She has also been unable to work for the past year because of her health, adding another layer of financial uncertainty for Heidi’s family. “You make just enough, but not enough to survive,” she said. “Then throw in medical bills and you’re tanked.”

But the financial burden is only part of what makes the search so difficult. Heidi is also trying to navigate a health care system she says often feels fragmented and disconnected. Her primary care provider, she said, does not always know what happens after referring her to specialists because she does not consistently hear back from them.

She often waits months to see specialists, after thousands of dollars in copayments. “I keep getting passed off from one specialist to another, and nobody seems to be collaborating,” she said. When she does get an appointment, they can be as short as 15 minutes.

Heidi also worries about how insurance decisions shape what care she can receive. She said utilization reviewers and authorization staff may weigh in on treatment decisions despite never having met her.

Frustrated, Heidi began trying to coordinate her own care.

She created a medical dossier that compiled her medical information into short summaries and highlighted laboratory results that had consistently come back abnormal. She hoped it would help doctors see patterns across her medical history rather than looking at each problem in isolation. “They treat the textbook, not the patient,” she said. Her husband eventually suggested she find an advocate to help navigate the system, and Heidi began working with one through Solace.

She does not have a clear explanation for all of her symptoms, or a treatment plan she knows will work. And she does not know what the next attempt to find one will cost.

But stopping the search is not an option.

She wants to get back to her life. “I have young kids. I want to be able to function and live my life, but I have to choose between feeding my family or actually functioning, which is so awful,” Heidi said. Until she finds an answer, each new test, referral or treatment comes with the same question hanging over it: what will it cost, and can her family afford to find out.