She now has to weigh whether to dump the nearly
"I work out every day, there's nothing really that I can't do now," she said.
Glaring differences in insurance coverage persist for amputees, children with autism and others in need of certain expensive treatments even after the Affordable Care Act set new standards as part of its push to expand and improve coverage, and despite efforts by states to mandate coverage for some treatments.
These differences don't develop simply because some people pay more for better coverage. Instead, they stem from random factors like what state someone lives in or who happens to provide their coverage — and often people can do nothing about it. The federal health care law largely leaves decisions on what actually gets covered up to states or employers who provide insurance for their workers.
These gaps can bury patients in debt or force them to skip care. And they may become more common as health care costs continue to rise and insurers and employers look for ways to control that expense.
"I think you would need to see
States have passed about 1,800 mandates requiring the coverage of various treatments or conditions, according to the
Hours of this daily therapy, which is a standard treatment for autistic children, have helped Alex learn simple tasks like how to brush his teeth or say hi to another kid. Castillo worries that her son will regress if treatment stops. But it can cost more than
"You don't feel like you're in control," she said.
Her employer's coverage is self-funded, which means it pays its own health care bills instead of buying coverage from an insurer. That also means it doesn't have to comply with most state coverage mandates.
Employers have been slowly switching to this type of coverage for several years to help control what has become one of their largest expenses and to avoid some of the requirements imposed by the ACA, said
Insurers and employers routinely cover organ transplants, heart procedures and other expensive surgeries. But coverage still varies widely for a range of patients that also includes people recovering from eating disorders like anorexia and women who need breast reduction surgery to ease back pain.
The cost of a particular treatment, the need for it in a covered population and lingering disagreements over necessity help explain some coverage differences.
Bariatric surgery, which can improve the health of obese patients by limiting food intake, can cost
But the quality of that coverage varies widely, according to the
An annual survey of large employers by the benefits firm Mercer found that 40 percent offered no coverage for infertility treatment last year. Some companies don't view it as essential to a person's health, while others with an eye toward attracting and keeping good workers, have started offering the coverage to help LGBT patients conceive.
"We see a lot of variation between employers, and it's extremely confusing to the consumer," said Dr.
She bought her coverage on
"I know what the challenges are," she said. "If you go out and get in a car accident and lose your leg, you're not going to be prepared for something like this."