Arijit Guha did everything right, but the news came at the exact wrong time and the exact wrong place.
Of course, there’s never a right time for an otherwise healthy 30-year-old graduate student to be diagnosed with Stage IV colon cancer. But even as portions of the federal health care reform law take effect, the story of how Guha ended up without insurance coverage for his chemotherapy suggests there are still gaps in coverage for college students.
Guha thought he was being proactive. After arriving at Arizona State University in 2009 as a doctoral student in the School of Sustainability, he enrolled in the university's insurance plan through Aetna Insurance and paid more than $400 each month to add his wife to the plan.
The plan wasn’t known for its generosity – it didn’t cover prescription drugs – but Guha thought he’d at least be covered if tragedy struck.
And last January, tragedy did strike. Just after his 30th birthday, he received the cancer diagnosis and started an intensive chemotherapy regimen two hours away in Tucson. Back in Tempe, his Arizona State professors allowed him to Skype into class discussions when he wasn’t feeling well.
But late last month, the cost of his treatment eclipsed $300,000, the lifetime maximum benefit on Arizona State’s Aetna plan. Guha found himself uninsured.
He’s not eligible for Medicaid and he can’t enroll in a federal insurance program for the uninsured until he’s been without coverage for at least six months. That program is a product of President Obama’s controversial Affordable Care Act.
Adding to the cruelty of the situation, the Affordable Care Act mandates that colleges do away with lifetime benefits. But those requirements, which will be phased in, haven’t yet taken effect.
Now Guha is hoping to avoid medical bankruptcy through donations  and merchandise purchases  on his Web site, poopstrong.org . The site's name is a play on bodily functions related to the disease. His doctors at the University of Arizona Cancer Center are also trying to help, but he expects his care to cost about $100,000 before he’s eligible for the federal insurance plan in August. (He also worries what might happen if the Supreme Court finds the health care reform law unconstitutional or if it is repealed by Congress.)
In its standards  for student health insurance, the American College Health Association recommends that institutions provide “an adequate and appropriate scope of coverage” for, among other things, “catastrophic illness or injury.”
But ACHA President Anita Barkin acknowledges there’s little consensus on how high of a lifetime or annual benefit cap constitutes “adequate and appropriate” coverage. And colleges have to weigh the dual mandate of securing affordable coverage for as many students as possible with the increased costs that come with offering higher lifetime limits.
Carnegie Mellon University, where Barkin directs student health services, has a lifetime cap of $1 million. In 20 years, Barkin said she can remember a few cases of students exceeding $500,000 in medical bills. No one, she said, has ever approached the lifetime limit in her time at Carnegie Mellon.
But Arizona State isn’t unique in offering a $300,000 maximum benefit. In fact, it’s more generous than many institutions.
While some colleges cap their benefits at $500,000 or more, Oregon’s Pacific University  has a maximum benefit of $100,000. Students can purchase another $100,000 in coverage at the beginning of each year. The University of Missouri at Kansas City , which also works with Aetna, has a lifetime cap of $250,000 per illness.
The increasing cost of medical care has made once-acceptable benefit caps easier to exceed, Barkin said.
“A $100,000 limit 15 years ago might have been O.K.,” she said. “At this point in time, $100,000 is not a lot of coverage.”
The ACHA doesn’t have data on lifetime benefits offered on student health plans, but the issue will soon become moot if the health care law isn’t repealed or declared unconstitutional. Eventually building toward a point when college plans won’t have benefit caps, a proposed Department of Health and Human Services rule  asks colleges to provide a $2 million cap for plans that start after late September before doing away with the limits altogether on Jan. 1, 2014.
Healthcare reform has generally been credited with keeping college students and other young adults insured, including one provision that allows adult children to stay on their parents’ insurance plan until they turn 26. But with the full law not set to take effect until 2014, students like Guha still find themselves in situations the act was intended to prevent.
Graduate students are often at a higher risk for these issues, said Matt Cooper, president of the National Association of Graduate-Professional Students. Usually years or decades older than undergraduates and less likely to be covered by their parents' insurance plans, graduate students often have unique health needs that aren't always covered by college health plans, Cooper said. He's hopeful conditions will improve after the full health care reform law takes effect.
College health workers are trained to help students who've passed their maximum benefit amount find care. Often low-cost clinics or Medicaid become options.
“In cases where students appear to be exceeding their maximum limits on insurance or uninsured,” Barkin said, “a lot of schools have case managers helping students identify ways they can get care in the community.”
In addition to being stressful for the ill student, Barkin said, such cases are also difficult for their doctors and nurses.
“We care about students,” she said. “We care about their getting care. I can’t imagine that a college health professional would walk away from a student and say, ‘Tough luck.’ ”
To Arizona State’s credit, Guha said, that isn’t what happened. The university found a way to save him money by having his chemotherapy pumps disconnected in the health center for $10 instead of in a hospital for $150-300. And he met with case workers who tried a find a way for him to retain coverage.
“They have tried to be helpful and provide as much support as possible,” he said, “but their hands are really tied in the matter.”
In the past, Guha said, many Arizona State students approaching their lifetime limit were eligible for Medicaid. But a state law enacted last year tightens restrictions  on who can receive those benefits in Arizona. Childless adults above the poverty line -- people like Guha -- generally aren't eligible for Medicaid in the state.
It’s tough, he said, especially when a law designed to punish freeloaders ends up penalizing a graduate student who always had health coverage.
“There are these hypothetical examples about this healthy young guy who chose not to be insured and now wants the taxpayers to pay for their health care,” he said. “I didn’t choose not to get health care.”
But he’s been heartened by the support he’s received from his doctors, his professors, and the perfect strangers who log on to poopstrong.org  to buy a T-shirt or just donate. He’s thankful for the legislation that will allow him to get coverage again this fall, and is looking forward to starting his dissertation research on how climate change impacts suburban water use.
Guha hopes his plight serves as a cautionary tale about the remaining gaps in the health care system, and encourages others to read the fine print of their own policies.
And with the uncertainty surrounding the future of federal health care reform, he hopes colleges heed his story and increase their maximum benefits. He’s testified before the Arizona Board of Regents, which is negotiating a new insurance plan for the state’s three public universities. The bid proposal asks for a new annual maximum benefit of $1 million. Guha is hopeful they’ll increase the maximum benefit even if the federal mandate to do so is overturned. While few people think about maximum benefits, he knows firsthand how devastating they can be.
“This is not something I had thought at all before this happened,” he said. “I imagine the vast, vast majority of students on student health care plans don’t have the slightest clue that lifetime caps exist.”