When April Golston of Santa Cruz, California, was preparing to send her son off to college, she never dreamed that arranging health insurance coverage or finding a new health care team would be such frustrating obstacles. 

April’s son, Graden Golston-Kreyche, had won an academic scholarship to study chemistry at his top choice school, McDaniel College, despite severe flares with lupus nephritis all through high school, a year of chemotherapy, and of course, a few teachers who questioned the need for extra homework time because “he doesn’t look sick.”

“If I had my way, his condition would have played a role in the location of his school,” April admits. “But he was determined not to let lupus define him. When he visited McDaniel, he fell in love with it.”

McDaniel College was located nearly 2,900 miles away, in Westminster, Maryland. As April and Graden would discover, going to an out-of-state college can lead to health insurance coverage complications.

Benefits vary by state

Around the same time Graden received his admission letter in December 2013, April was laid off from her job and lost her employer-based health insurance. Because the Affordable Care Act (ACA) currently allows parents to keep adult children on their private health insurance until age 26, April began paying $3,000 per month for COBRA—continuation health coverage that companies offer to former employees—so Graden would stay covered under COBRA or any employer-based plan she’d have at her next job.

Soon after, April encountered the first two health coverage complications: Her California based COBRA insurance would not cover Graden’s medical care in Maryland. And because she planned to claim Graden as a dependent on her taxes in California, coverage was not available through the ACA, either, since he would be an out-of-state resident.

She started looking at private health plans from Maryland’s Health Insurance Marketplace, knowing that the ACA prohibits insurance companies from denying coverage to people with pre-existing conditions such as lupus. She learned that the plan in Maryland might not cover Graden’s care in California during summer break, spring break, and holidays. And she ran up against the same problem with her taxes: “If you’re not living in the state where your parents are claiming you, you’re not eligible for a state plan,” April says. That’s when she started researching student health plans.

Look for student health insurance plans

Student health plans are a viable but often over-looked option for students with chronic conditions like lupus, says Richard Simpson, chair of the American College Health Association’s Student Health Insurance Benefits Coalition.

“Student health plans are less expensive, not because they have fewer benefits, but because students tend to be healthier and younger,” Simpson says. “Our goal is to keep students in school. The last thing we want them to have to worry about is dropping out because they couldn’t get treatment.”

The best way to find out about a college or university’s student health insurance plan is to look for “student health insurance plan” on the college’s or university’s website. Be aware, though, that in addition to residency requirements, out-of-pocket costs include monthly premiums, deductibles, co-insurance, co-payments, and medication costs.

Fortunately, the student health plan at McDaniel covered Graden’s health care. The plan has some limitations, though: Coverage doesn’t start until the school term begins, and it stops when the academic year ends. When Graden’s new medical team wanted to see him prior to starting classes, April had to ask—no, beg—the student health plan’s administrators to allow the coverage to begin earlier.

College-bound students with lupus typically have four options for health coverage: 

• The parent’s employer-based health insurance, if the student is attending college in the same state. 
• A health insurance plan offered through the Affordable Care Act’s Health Insurance Marketplace (there may be residency requirements). 
• A student health insurance plan, usually offered through the college’s health services office. 
• Medicaid, if the student meets residency and income eligibility requirements.

Pick doctors in advance

The seemingly simple task of locating new physicians also can be troublesome. Some doctors won’t take new patients, or have hours that don’t work with the student’s class schedule. The first available appointments may be months off. Or, the student might get a referral for a specialist, only to find that the doctor doesn’t take the student’s insurance.

And, as April found out, even with a referral from the home-based health care team, many specialists want to establish the physician-patient relationship before school starts. That could mean making an extra trip to campus—an especially burdensome requirement for out-of-state students.

Luckily, lupus specialist Michelle Petri, MD, MPH, runs the Hopkins Lupus Center at Johns Hopkins University School of Medicine (JHU), 35 miles from Westminster, in Baltimore. April contacted her office and found that JHU accepts the McDaniel student health plan insurance and that Petri was accepting new patients. With proof of insurance, Petri agreed to see Graden when he arrived a week early for the fall term.

Don't forget about medical records

Still, before that first appointment could be scheduled, Petri’s office needed to have all of Graden’s numerous medical records ahead of time. But as April and Graden tried to make sure all of his medical records were transferred to Petri’s office, they encountered another complication: obtaining the information.

“Once a child turns 18, the doctor’s office staff won’t talk to the parent anymore. They only want to talk to the child,” April says. The only way to get information is with a written waiver signed by the parent and the child, and then given to each health care organization. For people with lupus, that can be a lot of waiver forms.

“Each medical center and office that had Graden’s charts had a different form with a different name,” April recalls. “I was constantly told, ‘You can’t do that. You can’t get information on him.’ This took dozens of hours of phone calls with the various offices. You have to be very persistent.”

In the end, April’s persistence through the maze of insurance and waivers and appointments paid off with peace of mind—Graden’s first year at McDaniel was a healthy one, but if his lupus had flared, he was covered.

Know before you go

Preparing for college and managing lupus can feel like juggling a million marbles. But staying on top of everything could be the difference between having a healthy college experience and dropping out because of illness.

“I’ve had lupus patients who were under my care in perfect control while at home. Then, they go off to college and come back four years later in kidney failure,” says Michelle Petri, MD, M.PH, director of the Hopkins Lupus Center at Johns Hopkins University School of Medicine.

After a college-bound student has selected a school, or narrowed the pool of choices, the task mastering starts. The twofold goal: to find the right medical care team and the right health coverage to pay for services. It’s also a good idea to let the college health center know about a lupus diagnosis.

“I want everyone with lupus to pursue their career goals, do the things they love to do,” Petri says. “It’s not unusual to have to write a letter to a dean requesting a lighter course load or extra time to take tests. The worst case to avoid is the student having to take a leave of absence.”

Petri says that for young adults with lupus to have a smooth transition to college, the following factors need to be considered: