Part-time waitress and nursing student Delena Belanger is in health care hell. But the tumor in her brain is the least of her problems

PHOTO BY RUSS ROCA

One autumn morning, a little more than a year ago, Delena Belanger woke up with a headache, an oozing ear and a fat lip.

The headache was old news. For more than nine months—since about February 2007—she’d been sleeping sitting up, just so she could sleep at all. A few months later, the ear had begun dripping a yellowish blood, beginning the day she got off a ride at the Orange County Fair. She’d been to four different free clinics around Southern California about the symptoms. The doctors said she had a nasty ear infection.

But now, as she awoke with a lip that was swollen and purple—a result of blacking out and crashing to the floor of her Long Beach apartment—Belanger was waking up to a living nightmare: She was lethally ill and completely without health insurance.

Now, after three brain surgeries have removed 90 percent of a benign but aggressive tumor—and racked up medical bills estimated to total in the multimillions of dollars—Belanger needs one more radiation treatment to perhaps save her life. But her health problems are compounded by a condition that seems even more impossible to treat: the health care system.

Here’s the dilemma: The radiation Belanger needs to stop the growth of the tumor’s remaining tentacle is only administered to patients who carry insurance. Yet she cannot get insurance because of a “pre-existing condition”—that is, the very presence of the tumor making the radiation treatment essential.

Welcome to Health Care Hell. It’s a very special torture chamber, varying from patient to patient. For Belanger, it’s a nauseating carousel ride of robotic toll-free numbers, baffled case workers, fine-print paperwork and unanswered questions.

More than a full year after her first surgery, Belanger has yet to receive a single invoice for her multiple operations or her month’s stay in the intensive care unit at Harbor UCLA Medical Center—the county hospital she had to go to because it admitted her, regardless of her ability to pay.

But her bill will still be huge, and, eventually, someone has to pay it. Obviously, it won’t be her. She’s a 32-year-old waitress financing her education—kind of ironically, as a nursing student—not a multimillionaire.

Belanger would declare bankruptcy, if she could, and she’d be in good company. Roughly half of all personal bankruptcies in the United States are provoked by health care costs. But she isn’t exactly sure what she owes. The ugly sum is being withheld by the state until Medi-Cal—California’s version of the federal Medicaid program meant to assist people who can’t afford to carry personal insurance—determines whether or not she qualifies.

Going into emergency surgery on Oct. 23, 2007, Belanger was among California’s 6.7 million uninsured. Now, only two weeks away from completing her nursing degree at Long Beach City College, she has no idea how to untangle her labyrinthine medical status and move on with her life.

BECOMING UNCOVERED
The one-bedroom apartment Belanger rents with a friend is small, clean and bright. Her cat, Buddha, greets you at the door, then runs under a purple futon, which has been Belanger’s bed since June. Exhausted after a 12-hour third shift at Torrance Memorial Hospital, Belanger drops onto the futon, too, and takes off her white nursing sneakers.

“It’s so small,” she says of her place, which primarily consists of this piece of furniture. On its right arm, her laptop sits open, ready for work; on the left, a stack of highlighters, nursing manuals and binders teeter at the mercy of her cat. It’s hardly the stress-free living space of someone who just endured surgical and emotional hell. “But I’m lucky to have it—to have anything, really.”

Lucky? Unusual choice of words for a woman whose existence has suddenly become so precarious.

“Lucky and blessed,” she adds, “to have someone take me into their home, to help me when I wouldn’t ask for help.”

“Delena has always been stubborn,” says Harry Belanger, choosing a different word to describe his daughter during a phone call from his home in Nevada. “She was walking at 7 and a half months—not very well, but she wasn’t going to let anyone tell her to sit still.”

And Belanger certainly is not letting anyone tell her to sit still now. Between studying for nursing exams and lodging her required clinical hours during graveyard shifts, she is nowhere near giving up.

Cash has been pretty tight since her surgeries, but it’s never exactly been loose. She comes from a working-class family, and 71 percent of Americans in this demographic are uninsured. In that sense—and in so many more—Belanger’s circumstances are not out of the ordinary. What’s happening to her could happen to almost anybody.

In fact, for most of her life, Belanger’s health care situation was better than most in her economic strata. As she grew up in the state of Washington, her family did carry insurance. Belanger was covered under her parents’ plan, until she hit her mid-20s. When she came to Long Beach State as a premed student, she claimed herself as an independent to receive financial aid for school, but she was given minimal health care through the university—birth control pills, pap exams and cough syrup. When she graduated in 2005, however, she lost even these small concessions.

Belanger had a degree in biophysiology, but she was living paycheck-to-paycheck while she worked a part-time waitressing job at Parker’s Lighthouse to put herself through the nursing program at Long Beach City College. Since she could not work full time for the restaurant, it could not provide her with employee health insurance. And she wasn’t making enough money to afford a policy on her own. It went on like this for three years, but she didn’t worry too much.

“I’ve never had health problems,” Belanger sighs. “I’ve never even broken a bone—not even [when I was younger] as a gymnast. I thought I would be fine without insurance for a few years.”

Lots of people take that risk during the break between their college and professional lives. According to the State Coverage Initiatives (SCI)—a national program of the Robert Wood Johnson Foundation working with states to expand availability and affordability of health care—more than 56 percent of the estimated 47 million uninsured people in America are between 18 and 34.

As it turned out for Belanger, however, that meant she was uncovered by health insurance when she needed it the most.

PHOTO BY RUSS ROCA

WATER ON THE BRAIN
“Suddenly, I was pulled out of my world and put into a hospital,” says Belanger, still sitting on her futon as she shakes her head and pets Buddha in opposite motions. “It’s still a blur.”

Though, with a little time to think, the details emerge: During the four months between October 2007 and February 2008, Belanger underwent more than 30 hours of brain surgery, nine CAT scans, six MRIs, one stroke and a month’s worth of pureed hospital food. In the course of her first and second surgeries, she developed a softball-size Stage II bedsore on her coccyx, a Nerf football-size hematoma (a giant blood clot) above her groin and had a metal plate put in her head behind her right ear. After having to completely shave off her back-length red hair, she underwent a second surgery, where doctors were forced to cut her hearing in order to remove more of the tumor, leaving her permanently deaf in her right ear.

Fortunately, she didn’t have to go through it alone. Through a twisted bit of strange luck, her father had lost his job as a  receiving clerk the day before Belanger planned to celebrate passing her third-semester final exam at nursing school—and had made a spur-of-the-moment decision to drive from Nevada to surprise her.

Consequently, Harry Belanger watched his daughter’s little party—where she nursed three beers during six hours. He witnessed the way these drinks made her nearly incoherent. Then, when they returned home, he saw her fall face-first on the linoleum floor—and, as bad luck would have it, on a nail that was jutting out from the surface. This was enough for him. When Belanger woke up the next morning with a fat lip, she insisted she was fine and able to go to work. Harry thought otherwise and, the next day, insisted they go to the emergency room.

For the next four months, Harry rarely left his daughter’s side. He held her hand while the doctors at Harbor UCLA diagnosed her with an acoustic neuroma—a rare benign brain tumor the size of an apricot seed, which had wrapped around the nerve in her brain that controls hearing and balance. He was next to her when they told her about her hydrocephalus—literally, water on the brain—a swelling of the brain caused by the tumor in her head. He slept curled up in his car in Harbor UCLA’s parking lot during Belanger’s month-long recovery.

“I just keep thinking,” Harry Belanger says, beginning to choke up, “I lost my job—and my new job was taking care of my little girl again. It was a godsend.”

DEFINING DISABILITY
Ten months after her high-priced brush with death, Belanger is standing beside her kitchen table, holding a recent notice from the California Department of Social Services in one hand and her cell phone in the other. She dials somebody named Chris—the latest of five case workers provided to her by the state, ostensibly to guide her through the application for disability-specific Medi-Cal. None of the other four were able to give her the answers she needs. Hundreds of phone conversations with these case workers have basically boiled down to their apologies for the application process taking so long. Most of the time, they mispronounce her name.

“Chris is the best case worker I’ve had,” Belanger says, as she is put on hold. “He has really tried to help, but there’s nothing he can do. My case is just another file on another roundtable of doctors and lawyers. They read your paper and write ‘deny’ or ‘accept.’ ”

According to the notice in the non-phone hand, however, Belanger’s foot-thick file still doesn’t have enough pages for the state to reach a verdict. She is being summoned for more testing, so Medi-Cal can determine if the deafness in her right ear qualifies as enough of a disability to help her pay her medical expenses.

This frustrating process began several hours before Belanger was rushed into emergency surgery on that October day, when her parents filed her first application for Medi-Cal. Two months later, she was denied for not being any of the following: 65 or older; blind; disabled; under 21; pregnant; in a skilled nursing or intermediate care home; on refugee status for a limited time; or a parent, or caretaker relative of a child under 21. Apparently, there’s no category for an intelligent, energetic, ambitious, 30-something woman who has been more than capable of taking care of herself—until she got a brain tumor.

“I’ve paid into Social Security and Medicare since I was 15 years old, and I’ve paid into Medi-Cal since I moved to California 12 years ago,” Belanger says, showing a rare flash of irritation. “The state of California only allowed me disability for six months—only $230 every two weeks—but I wasn’t allowed to go back to work, by doctor’s orders.”

And then the disability checks ran out. Belanger reapplied for Medi-Cal after her second surgery—the one that took away the function of her right ear—thinking this disability would qualify her. But she’s been on hold ever since, just like she’s on hold now, waiting for a response from Chris.

When he finally got back on the line, she had some questions for him.

“Can you define what it means to be disabled under Medi-Cal’s standards? Does being deaf in one ear qualify me?”

He didn’t know.

“How long does it usually take to get a response from Medi-Cal?”

No answer.

When The District contacted Harbor UCLA Medical Center with those same questions, spokesperson Julie Rees could not provide any answers, either—”That’s getting into an area I doubt we’d comment on,” she said—although she did inadvertently shine light onto why.

“We work on a food-chain approval system here,” Rees explained. “So write me an e-mail with your questions. I’ll send it up the food chain. I know it sounds very bureaucratic, but I work for L.A. County, and we have a big bureaucracy.”

The District’s phone call to the state’s information hotline was equally unrewarding, but even more time-consuming. The question was posed—does deafness in one ear qualify as a disability?—and a wild relay began. After seven transfers—to places as far-fetched as the Disaster Relief Service Center—the call ended up at a dead-end voicemail.

A call to the Department of Social Security brought a kind woman to the line. She explained that every state agency in California has a different definition for disability, but Medi-Cal uses the one implemented by the federal Social Security program. A quick Google search and a click on the Social Security Web site (ssa.gov) brought up the answer:

“We consider you disabled under Social Security rules if: You cannot do work that you did before; We decide that you cannot adjust to other work because of your medical condition(s); and Your disability has lasted or is expected to last for at least one year or to result in death.”

Is Belanger qualified for disability-related Medi-Cal?

Who knows?

PHOTO BY RUSS ROCA

SCARS AND METAL DETECTORS
Belanger leaves her apartment and ducks into a car loaned to her by a friend until she gets stabilized. The back seat is cluttered with more nursing manuals, a heavy backpack and a few changes of clothes. After a 30-minute drive, she pulls into the long entrance of Harbor UCLA Medical Center, where she’s supposed to pick up X-rays for her records. A collection of mobile-home-style satellite stations dot the perimeter of the hospital—all of which are moss-covered and plagued with peeling paint.

Belanger senses the depressing impression the place might give a first-time visitor. “Just so you know, it looks worse from the outside than it is,” she says, “When I was here, I received excellent care.”

But the appearance of the place had its impact on her, too.

“It was still freaky,” she says. “It’s a difficult hospital to come to. You have to go through a metal detector before you even get in. Every single time. They write your name down before you go into the ICU. So, it’s kind of like jail. Nobody would want to go there.”

Agreed.

Belanger starts with the ugly stories.

“I was sitting next to somebody who was shaving his head as I was sitting there [in the emergency room],” she recounts. “I was watching people pick their toenails. I was watching people who had been sitting there for more than 24 hours because they wanted their drugs. It’s a very sad situation.”

The same sorts of people are there this time, too. And after Belanger collects her records and goes out to the parking lot to leave, the sad ambiance of the place plays out in one final act—a dispute between two people trying to park their cars in the same slot.

“You see!” Belanger says, disgusted.

Her tone isn’t so much directed at those people as it is derived from her resentful suspicion that they are all on Medi-Cal, while she—bearing a scar on her lip from her fall, a scar from her bedsore and a scar behind her right ear from the surgery—still is not. She knows it’s not their fault—doesn’t even know if it’s true—but she admits it gets her down, and sometimes she feels like she brings others down, too.

“My family is still struggling with this,” says Belanger, leaving the hospital. “I tell them I’m sick of being strong. I want to cry every day. Crawl in a hole. Have a pity party for myself. But we can’t do that.”

Even as she waits for her medical records to be sorted out so she can get that final radiation, she feels she’s healing—and she knows she is on schedule to graduate from nursing school at the end of the year.

Afterward, she can help others with their own healing process.

“We have to appreciate what we have, right?” she says, and she asks because it’s what her new and tenuous life has taught her. “Not everybody gets a second chance. And that’s how you have to look at things.”

EPILOGUE
Belanger passed her final nursing exam in mid-November, and will walk in her graduation ceremony on Dec. 16, with her entire support group—extended and immediate family, friends,  fellow employees, professors and the LBCC Nursing Student Association—cheering her on. Although Medi-Cal doctors have still not determined if she qualifies for aid, she remains positive. She is searching for a job and hopes to acquire health insurance through her next employer. And her red hair is slowly growing back—it’s almost long enough to pull back in a ponytail.

Tags: DELENA BELANGER, HARBOR UCLA MEDICAL CENTER, MEDI-CAL, MEDICAID