UC Santa Cruz graduate student Micha Rahder suffers from a rare disorder that requires her to be hooked up to an IV over two days, five to eight hours at a time, every four weeks.
Afterward, her body returns to more than 95 percent normal.
Without the exhaustive treatments, the effects can be severe. "I can barely walk and can't really move my hands," said Rahder, diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy -- a disease that attacks the nervous system.
But the therapy is also expensive. And now, the crucial medication that costs thousands per treatment and keeps her walking may be over.
In November, she got a letter from the university saying she had used $378,000 of the $400,000 lifetime limit for students on the University of California student health insurance plan (also known as UC SHIP), Rahder said.
In early January, a little more three years after her first treatment, she received another letter.
"It comes from the Office of the President of the University of California and it says, 'You've reached your lifetime maximum benefit. You're no longer covered under the student insurance plan. Please be advised that all students at the UCs are required to have health insurance in order to be enrolled.' And that's all it says. That's the last line," said Rahder, who is studying for her doctoral degree in anthropology.
Many students on the UC student health insurance plan don't know there is a $10,000 a year cap on annual prescriptions and a $400,000 lifetime limit on all medical benefits.
Lifetime limits have disappeared for many Americans, but some students on university health plans are finding themselves without coverage during medical emergencies.
While the Affordable Care Act has forced insurance companies to drop lifetime limits on most benefits for insurance plans started or renewed after Sept. 23, 2010, according to the United States Department of Health and Human Services, UC SHIP and many similar student health plans nationwide are exempt because they are "self-funded."
More than 300,000 students are covered by these self-funded student health plans at more than 30 colleges and universities nationwide, said Steven Bloom, director of federal relations at the American Council on Education, an association that represents institutions of higher learning. About 135,000 UC students at its 11 campuses are enrolled in the plan each year.
The UC Student Association asked the UC regents Jan. 17 to drop lifetime limits beginning next school year. No decision was made, but one could come soon.
"We expect our insurance to cover lifesaving care if we need it," said Charlie Eaton, a UC Berkeley graduate student and member of UAW 2865, a union representing UC student workers. "I think parents should be very concerned; they don't want a young person deciding to forgo lifesaving care because of a cap on coverage."
Most college students are young and healthy, with the vast majority only needing routine checkups, said Anthony Wright, director of Health Access California, a health care consumer advocacy group. However, medical emergencies do happen and "the point of insurance is to protect you against that one-in-a-million chance that could ruin your financial future," Wright said.
Although not required by law, the UC plan has voluntarily included some aspects of the Affordable Care Act, such as providing coverage to students with pre-existing conditions and meeting "minimum essential benefits," according to the university.
But annual and lifetime limits are a lingering issue. Especially with students who are surpassing them, such as Kenya Wheeler, who had brain surgery for an unknown mass in his right frontal lobe.
A string of seizures had sent the UC Berkeley graduate student to the emergency room. After the dangerous growth was removed, tests on the tissue revealed Wheeler had primary CNS lymphoma, a rare cancer that attacks the brain and spinal cord. Wheeler battled against his cancer with regular, marathon hospital stays and a regimen of expensive chemotherapy drugs. In January 2012, three months after being diagnosed, he went to refill his prescription but his insurance was denied, Wheeler said.
"I called the student health insurance office and was told that there was an annual prescription maximum," Wheeler said of the $10,000 annual limit on drugs.
Students who surpass the lifetime limit each year are rare, said Heather Pineda, director of the UC student health insurance plan.
"I'd love to get rid of those maximums on the plan," Pineda said. But "it's a matter of how that affects the cost of the plan to all students."
Student premiums directly pay for the plan, and any increases in expenses will dig into students' wallets. The university is managing a delicate balance of affordability and services, Pineda said.
Students who have bumped up against their lifetime limits with the UC health plan have a few options. "Most students that hit the lifetime max qualify for Medi-Cal," Pineda said.
But neither Rahder nor Wheeler has been able to get those benefits.
Since private insurance companies can refuse policies to people with pre-existing conditions until the Affordable Care Act goes into full effect in 2014, UC has set up a special "conversion" plan with the insurance company Anthem, which guarantees coverage, Pineda said.
But that plan comes with an impossible price tag for a student, said Rahder, who already has paid her deductible and $3,000 out-of-pocket this year on UC SHIP. "My first month on the conversion plan would have cost over $9,000, followed by between $500 to $1,000 per month after that."
In 2014, all people are required to have health insurance that meets the Affordable Care Act's "minimum essential coverage," or face a penalty.
Because self-funded student health plans like UC SHIP are neither employer plans nor individual plans, it's unclear what they need to do to meet the act's minimum, said Bloom.
The American Council on Education has asked HHS for guidelines.
The UC hopes to have next year's health plan set by the end of February, Pineda said.
But that won't be soon enough for Rahder, who is bracing herself for life without her treatments. "I'm going need to hire assistants around my house for basic tasks. I've had to buy a mobility chair, scooter thing, because I know that walking is just going to become too difficult," Rahder said.
She's hoping that she will qualify for California's Major Risk Medical Insurance Program and her treatments can start again. But that program has a low annual maximum, and Rahder expects to be out of money again in a few months.
Rahder, a dual U.S. and Canadian citizen, has contemplated moving to Canada, where her medical care would be covered.
Wheeler, who still has frequent medical visits, married his longtime girlfriend in part because of medical benefits. "We couldn't get any benefits as a partnership but as a married couple, I could be on her plan," said Wheeler, who is still trying to pay the bills from when his student health insurance ran out.
Contact Ryder Diaz at 408-920-5064. Follow him at Twitter.com/RyderKDiaz.