For 17 years, Michelle Arroyo fought tirelessly to save her son after he was diagnosed with brain cancer at the age of 6. A single mother from California, she moved closer to better doctors in Los Angeles, quit her real estate job to care for her son full-time, and spent all her savings, including her retirement fund.
Despite her efforts, Arroyo’s son, Grayson, passed away in 2023 at the age of 22. In addition to her grief, she was left with overwhelming medical bills, which she claims reached millions of dollars. She believes health care companies took advantage of her situation, leaving her emotionally and financially drained.
“The process was so overwhelming,” Arroyo recalled, describing the endless bills and calls with insurance companies. “It felt like I was going through it in the dark. When you’re trying to save someone’s life, you don’t think to ask about prices.”
Arroyo said if she had known the costs upfront, she could have made better decisions about her son’s care.
For years, the federal government has been working to improve price transparency in hospitals. In 2019, President Donald Trump signed an executive order requiring hospitals and insurers to disclose health care costs before treatment. This led to the Hospital Price Transparency rule, which became mandatory in 2021. The rule forced hospitals to publish standard charges for their services online.
However, many hospitals have failed to comply. A 2022 study found that less than 6% of hospitals fully followed the rule. A 2024 report revealed that nearly two-thirds of hospitals still did not comply with the price transparency rule.
Despite efforts from President Joe Biden to strengthen enforcement and fine non-complying hospitals, the rules were often ignored, with some hospitals accepting fines of up to $5,500 per day.
In February 2025, Trump took action again, signing an executive order directing the Departments of Treasury, Labor, and Health and Human Services to come up with a plan to enforce the price transparency rule within three months.
Arroyo believes that having access to price information could have helped her manage her son’s health care costs better. “If I had seen the prices,” she said, “I could compare them and choose the best value. It’s wrong that people get different prices for the same care.”
Over the last decade, Arroyo spent hundreds of thousands of dollars on medical supplies not covered by insurance. She recalled a bill of $1.5 million for less than three months of care in the ICU. While insurance covered most of the bills, she often had to negotiate lower prices. Today, she still owes $14,000 in medical debt.
Thanks to her background in real estate, Arroyo was able to negotiate some prices down, but she wonders how others without similar experience could manage.
“If you don’t have this information, how can you do it?” she asked.
Supporters of the price transparency rule argue that it could lead to more competition among hospitals and insurers, ultimately reducing costs for patients. James Gelfand, president of the ERISA Industry Committee, believes this rule will expose high prices and force hospitals to become more competitive, potentially saving patients billions of dollars over the next decade.
Some evidence suggests that price transparency is already working. Ge Bai, a health policy professor at Johns Hopkins University, pointed out that some hospitals have lowered their prices since the 2019 rule took effect, based on data from health care pricing platform Turquoise Health.
However, some public health experts are skeptical about the rule’s effectiveness. Gerard Anderson, a professor at Johns Hopkins Bloomberg School of Public Health, warned that comparing prices can be confusing for consumers because the pricing is often based on averages, which can be hard to understand and compare.
The Consumer Financial Protection Bureau reports that nearly 100 million Americans, or 1 in 4 adults, are struggling with over $220 billion in medical debt. Experts agree that if the price transparency rule is enforced properly, financially vulnerable patients will benefit the most.
“There is huge public support for this initiative,” Bai said.
One supporter of the movement is rapper Fat Joe, who advocates for accessible health care. As an ambassador for Power to the Patients, a nonprofit promoting health care transparency, Fat Joe has used public campaigns and events to support the cause.
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