People who have health insurance but get sick with rare diseases that require out-of-network care continue to face potentially unlimited costs.
The big picture: Federal regulations cap how much people pay out of pocket for in-network care, but no such limit exists for out-of-network care.
Zoom in: Cindy Beckwith, 57, of Bolton, Connecticut, was diagnosed with pulmonary artery sarcoma, a rare tumor on a main artery. She also has fibromuscular dysplasia, a rare blood vessel condition.
- She has ConnectiCare health insurance, which she gets through her husband’s employer.
- Her local doctors suggested she see specialists at the University of Pennsylvania Health System because her conditions were so uncommon, but the system was out-of-network.
- “I had to go out of my network,” Beckwith said. “I didn’t have a choice.”
The bill: $20,138.40 from Penn Medicine, the parent of UPHS, a profitable system with $8.7 billion of revenue last year.
- Over a few years, Beckwith received a lot of care from the hospital, including two open-heart surgeries and inpatient chemotherapy.
- This bill showed charges of $270,000, just for services received in 2019. Beckwith and the hospital settled on $20,138.40. Penn Medicine “insisted” she pay a minimum of $441 per month until 2023, she said.
- Beckwith and her husband have already paid more than $11,000, and even though she says they are doing OK with her various medical bills, “there’s not a lot of extra money left over.”
Between the lines: The new surprise billing regulation only protects patients if they get non-emergency care from out-of-network doctors at in-network facilities.
- That means people with employer coverage that doesn’t have an out-of-pocket maximum for out-of-network care could experience large bills based on hospitals’ inflated charges, and have to negotiate payment on their own.
- “Out-of-network charges kind of seem like a little bit of funny money to consumers,” said Katherine Hempstead, a health insurance expert at the Robert Wood Johnson Foundation. “These are the things that make people feel kind of defeated.”
- “We didn’t expect this to happen,” said Beckwith, who has worked in medical coding for 30 years, said of her condition. “When it does, it can wipe you out.”
The other side: Beckwith’s hospital and insurance providers did not make anyone available for interviews.
- A ConnectiCare spokesperson said the insurer does “not speak about our members’ private health information.”
- A Penn Medicine spokesperson said in a statement the system “has a longstanding commitment to work with patients to help them understand the costs associated with their care, including out-of-pocket costs.”
The resolution: After Axios submitted a HIPAA authorization waiver, signed by Beckwith, to Penn Medicine to discuss Beckwith’s case, Beckwith received a call from Penn Medicine, whom she hadn’t heard from in months.
- The hospital knocked $4,000 off her remaining balance, telling her they reprocessed some old claims. She still owes almost $4,800.