Young man's cancer battle tougher without insurance

Children ran past Alonzo “Lonzi” Barrera as he sat beside his grandparents in the crowded emergency room of McAllen Medical Center more than six months ago.

People suffering from broken bones, flus and wounds from household accidents crowded the room. A fever exhausted his body as leukemia wore him down.

Barrera had known about his disease for about a month at that point.

It was his third hospital since he first received his diagnosis. The routine was a well-rehearsed dance for the uninsured 24-year-old.

It began in the emergency room. A nurse gave Barrera saline and antibiotics to break the 100-degree fever.

No insurance meant no chemotherapy until he was approved for aid. It also meant no choice.

Against doctors’ advice, he would check out in search of another option at another hospital.

On his own two feet, weary as they were, Barrera would walk out and pile into a truck with his grandfather and grandmother, his surrogate mother.

The group would make its next stop at the next hospital, where Barrera would spend another two weeks.

Each hospital treated the uninsured Barrera’s symptoms. But never the cancer that caused them.

Finally, Medicaid stepped in to provide some help. At that point, however, the damage was done.

Barrera’s friends and family have different terms for his cancer diagnosis.

Sometimes they say he “won the black lottery,” a bad situation at a bad time — as if there’s a good time to get leukemia.

Still, there could have been better times for Barrera.

The insurance from his father’s job at a wholesale plumbing distributor provided medical care for him throughout his childhood. Later, he was insured through AT&T, where he worked while attending South Texas College.

Barrera was laid off from that job in November 2008, a victim of the recession.

He found a job at T-Mobile two weeks later, but his benefits wouldn’t kick in until April 2009.

Not a problem, thought the recently transferred University of Texas-Pan American student — until he came down with what seemed to be a long bout of the flu. The high fevers worried him, but he continued his regular routine of work, class, parties and sleep.

He thought vitamins might help his illness. Without insurance, he sought help from a McAllen woman recommended by a friend who administered B-12 shots.

The shots didn’t help — instead, Barrera passed out. He soon learned why his body couldn’t handle the shot.

Three weeks after the flu-like symptoms began, Barrera knew something was terribly wrong.

Barrera enjoyed a night out at the now-closed McAllen nightspot McLain’s with his close-knit group friends.

The normally outgoing Barrera said he wanted to go home early.

Barrera’s longtime friend David Cadena took him home that night.

“I knew he was real sick. The night before he went to the doctor, we were talking and I told him to text me throughout the day,” Cadena said.

Barrera was diagnosed with Leukemia less than a week later.

In a small apartment in southern Houston, Barrera reads over his schedule for the upcoming week at M.D. Anderson Cancer Center. A room number and time are written next to each procedure and meeting. It resembles a college class schedule, except this plan could save his life.

Barrera’s brother-in-law Greg Molina battles family friend Charlie Ramirez on the X-Box amid mismatched furniture in the living room of the Barreras’ Houston apartment. They began renting the apartment when Barrera was transferred to M.D. Anderson. At almost $1,000 in extra costs to the family per month, leasing the temporary two-bedroom unit is still more economical than staying in a hotel.

They try to remain frugal. Barrera has already incurred $1.5 million in medical debt, his father said.

During X-Box breaks, his 28-year-old twin sisters take turns teasing him about his flamboyant tendencies or about being the sibling with the darkest skin.

“Believe it or not, his skin can get pale,” one sister interjects as the others laugh.

“Y’all are so mean,” Barrera says with a grin.

His niece Yalainna is asleep in the middle of the floor. The 6-week-old baby girl was born as Barrera lay in a Valley hospital bed.

It’s not a time they remember fondly.

The Barreras’ irritation stems not from a single problem. It wasn’t one late dosage of painkillers or one morning of surly bedside manner that has Barrera’s family and friends angry with health care in the Rio Grande Valley.

Molina pauses his game to tell of the time when Lonzi waited three hours for sensitively-timed medication at one hospital.

Barrera recalled waiting five hours for Tylenol and cold packs to treat his 103-degree fever.

Cadena clenched his jaw as he spoke of the time Barrera developed a bed sore because of another hospital staff’s failure to regularly turn him. Several surgeries to treat the sores stacked atop his regular cancer treatment.

“We always felt like they treated him the way they did because he didn’t have insurance,” Cadena said.

Barrera traces his suspicion to a particular trip to the doctor. It was his first visit since being approved for Medicaid.

“(The doctor) would always talk about money and insurance, money and insurance. That’s all he would talk about. When I finally got Medicaid, he went ‘Oh finally, I’m getting paid,’ and threw his hands in the air,” Barrera said.

Barrera’s sister Yvette teaches special education at Eisenhower Elementary in Edinburg with her sister Jeanette. She was there for the visit.

“It’s very disturbing to see someone that money-hungry,” she said.

The only good thing his Valley doctor did for him, Barrera said, was make the call to MD Anderson Cancer Center in Houston — Disney World, he calls it.

The move came only after Barrera’s oncologist gave him less than a year to live.

Barrera attributes many of his troubles to having to wait a month and a half after his diagnosis for chemotherapy.

“It’s just terrible how it was. He couldn’t look at me like I was a human being,” Barrera said. “I’m sorry, but I value my life.”

In a last-ditch effort, Barrera’s doctors gave him a stem cell transplant this past Wednesday.

As part of the transplant process, patients receive high doses of chemotherapy or radiation to treat their cancer. The treatment kills both the bad and healthy stem cells that are in the marrow.

The transplant provides new stem cells for the patient from a healthy donor, replacing the bone marrow and allowing the blood counts to recover.

After the transplant, he’ll be in the hospital until early September, barring any complication that may arise. He will then spend 100 days in Houston, returning to M.D. Anderson each day for an examination.

Barrera’s father, Binito Barrera, is hopeful about the process, saying his son now has a specialist known as “the leukemia doc” on his side.

The tough-loving dad projects a brusque and intimidating face. A strong man.

But his demeanor softens when he speaks of his son’s condition — a subject he rarely mentions.

“It’s the toughest thing I’ve ever done,” he said.

Dr. Billy Marek, director of Texas Oncology, said more than half of Valley young adults with cancer lack insurance. But Marek, who did not treat Barrera, said based on a briefing of the case that treatment should not have been delayed as much as it was.

“That’s much longer than I would expect it to take,” he said, adding that “there may be patients who fall through the cracks.”

Indigent patients face tremendous challenges with the financial barriers and the process of cancer treatment via programs like Medicaid or the county’s assistance program, Marek said. That process typically takes up to a week with the help of his clinic’s on-call social worker.

“A doctor involved in the care of a patient needs to try to seek these things out,” he said. “Someone needs to act. It’s a devastating but curable illness.”

While financial help is available, Marek said resources for rare cancers and special treatments are further from reach now than they were five or six years ago.

Transfers and referrals of indigent patients to M.D. Anderson or the University of Texas Medical Branch in Galveston have become increasingly difficult. Down-payments for an indigent patient at M.D. Anderson, he said, range from $5,000 to $20,000.

“I’m not able to do that anymore,” Marek said. “Nowadays, they’re not going to get an appointment until the patient gets some kind of funding. They’re not there to bridge that gap like they were in the past.”

But even with no funding options or opportunity for transfer, Marek said “it doesn’t matter to me if someone has the best insurance or no insurance; I’m going to treat them the same. But it may be more of a challenge to get there.’”

The Lance Armstrong Foundation is among the many organizations worldwide that are declaring adolescent and young adult (AYA) oncology the new frontier of cancer care.

The problem, they say, is evident in the statistics.

Young adults tend to lose the umbrella of their parent’s insurance between 18 and 25 years old.

In 2005, 19 percent of all uninsured people were in that mere seven-year age range, according to the U.S. Department of Health and Human Services.

But cancer advocates say this isn’t the only factor working against young adults with cancer.

Clinical trials are used on about 60 percent of pediatric cases and only 1 to 2 percent of young adult cases, a study by the famed cyclist’s foundation found in 2006.  

And cancer patients in that age range, despite hormonal differences, are often lumped into the 18 to 65 category in clinical trials. That has an impact on survival rates, critics say.

Survival rates in adults and children had been rising steadily, but there has been no significant change in the rate in more than two decades among cancer patients 15 to 39 years old, according to a study released jointly by Livestrong and the National Cancer Institute.

In Texas, 179 children ages 1 to 19 died from cancer in 2006, according to numbers from texascancer.info. Texascancer.info In the same year, the state had 706 cancer deaths among people ages 20 to 39, almost 300 percent more than pediatrics.

Three weeks before his stem cell transplant, Barrera stands outside the family’s Houston apartment complex. He waits for the hours to pass before heading to an Astros game with six friends.

He says he needs a minute away from the crowd of people inside.

Barrera is without his surgical mask, even though he should have it on to prevent illness. He will wear it at the game that night because his friends will nag him unless he does. But he will take it off when they’re not looking, he admits.

Barrera really should not be going to the baseball game that night, but says he does not “want to go out being confined in a box.”

Sunlight peeks through the canopy of trees and falls upon Barrera’s face. For the first time, the light in Barrera’s energetic eyes has faded. There is no one to show off for.

The afternoon light reveals the ashen color of his skin and the dark circles beneath his eyes.

Barrera still has a long way to go. He weighs 170 pounds now. That’s up 40 from his lowest, but not back to a normal 185.

Barrera lights a cigarette, another act that he should avoid. But he brushes it off.

“I’m not a chain smoker, but my nerves lately …” he said.

The baseball game will be his last public outing for the foreseeable future. Hours of preparatory tests and procedures await him in the coming week.

A woman walks by. Barrera has never seen her before. “How you doing today?” he asks.

“Fine. Thanks. Yourself?” she says.

With a slight grin, Barrera responds: “Well, I woke up this morning.”

Friends of Alonzo “Lonzie” Barrera have set up a fund for him to help pay for medical costs. For more information, visit www.myspace.com/supportforlonzie

Sandra Gonzalez covers features and entertainment for The Monitor. You can reach her at (956) 683-4427.