Jun. 20--Editor's note: This is one in an occasional series by columnist Issac J. Bailey examining health care and insurance issues and how they affect the lives of patients and their families.
Registered nurse Carrie Maxwell slowly pushed chemicals into Devin Pate's veins to attack the cancerous cells the 19-year-old has been battling for years.
Pate turned to Jessica Dunn, her best friend, and shared her yen for a "good cheeseburger" at IHOP.
"Sorry, random thought," Devin said.
As they playfully joked to pass the time during what would be an all-day visit at the Medical University of South Carolina, the chemicals began snaking their way through Pate's body. Her doctors hope the weekly treatments will destroy the cancerous cells while leaving fast-growing healthy cells alone so her hair won't fall out again, and ulcers won't develop in her mouth and rub uncomfortably against her braces again, so she could make the two-hour ride home to Myrtle Beach without an upset stomach.
If ever there were a cancer patient who should be able to focus solely on battling her disease, Pate would be it. She has two working parents, each of whom has an insurance policy through an employer. And she's the type of student -- those who become too sick to carry a full class load -- recent laws were enacted to shield.
But because of implementation dates and provisions within provisions of federal and state health insurance laws, Pate's family is on the hook for several thousand dollars in unpaid medical costs, a total that could rise depending on decisions made by insurance claims adjusters. Her mother fears her daughter might be denied treatment in her battle against Stage 4 Gardner syndrome cancer because it is a pre-existing condition. That's an issue faced by almost 900,000 South Carolinians younger than 65 years old, according to Families USA.
It takes a bevy of experts to understand the byzantine health care laws and insurance regulations that explain the Pates' plight.
"All this confusion in coverage is one of the reasons I think health care reform passed," said Robby Kerr, former director of South Carolina's Department of Health and Human Services. "The average guy on the street doesn't have much of a chance figuring all this out, especially if a carrier is trying to limit its exposure to risk. The only problem with the recently-passed reform is that it's going to take a while for all this to settle out."
Meanwhile, Devin Pate also worries about the burden those mounting bills have placed on her mother, and about how she will pay for college and begin a long-hoped-for career in the medical field, now that her illness has cost her part of the scholarship that paid for her College of Charleston classes.
"I just want to make it through one semester," said Pate.
Devin Pate's story began in 2006 with crunches. Dozens and dozens of crunches.
"She was doing 100 crunches a day," said Paige Pate, Devin's mother.
Inexplicably her stomach had begun growing as she was readying for a dance recital. She was complaining about nausea, which the Pates initially thought was just a case of stomach flu.
But her stomach kept growing. Devin said some thought she looked like a woman with child.
"I mean, I never even kissed a guy, and now I'm pregnant?" she said.
She was carrying a 13-pound desmoid tumor that had pushed her intestines into her chest cavity.
After the surgery, "they said it looked like a Butterball turkey that you would see in a freezer, fully wrapped," said Paige Pate, Devin's mother.
Dr. Robert L. Fenning, an MUSC professor of medicine in the hematology-oncology department, said she was the third desmoid tumor patient in the 11 years he's worked at the hospital's Hollings Cancer Center.
"They grow slowly but they grow large," Fenning said. "It's a very slow growing tumor, but it tends to recur. That's the problem."
And it recurred. And Devin Pate had more surgery. And she began chemotherapy.
Her hair fell out. A couple of her teeth had to be removed. Boney tumors developed on her skull.
"When I first found out about Devin's condition I cried like a baby," said her father, John Pate. "It was the worst news I had gotten since the day I found out my dad was dying of stomach cancer."
Her mother got Devin enlisted in a six-month experimental drug trial in Texas. It didn't work.
Specialists at MUSC began consulting with specialists at the University of Michigan about her case.
"Every time I would stand up I'd feel like throwing up," Devin Pate said.
A bowel obstruction turned a routine excursion to Carowinds into a nightmare when a ride on a roller coaster ride sent her for an extended hospital stay.
She received more surgery to remove more tumors. And they came back.
By then, she was in her first semester at the College of Charleston, on a Life Scholarship funded by the S.C. Education Lottery.
"I got discouraged," Devin Pate said.
Until that point, the Pates' worries were mainly about how to get Devin better, hoping, praying that those tumors would stop growing, that the chemotherapy would work, that she could resume the typical life of a teenage college student.
"We never really had insurance issues, even when she had a 13-pound tumor and had to be in the hospital for 10 to 12 days after surgery," Paige Pate said. "We never got one bill."
But her coverage became more complicated when her parents began divorce proceedings about a year ago. And her father's company insurance, which provided solid coverage since Pate's diagnosis in the 10th grade, switched carriers last October.
When she was hospitalized on Sept. 30, two key legal things had changed: She had turned 19 less than two weeks earlier. And she was no longer a full-time student -- because she was too sick to maintain a sufficient school load.
Because of the way health insurance laws were written, those changes were more important than her parents' years of monthly health insurance payments.
"What makes her case so egregious is that she wasn't trying to shirk the responsibility of having insurance," Kerr said. "It's almost like a trap. It's a great deal for a parent to cover a child under their group plan rather than purchasing individual insurance. But if something goes wrong, then that child won't be eligible for their own coverage when they have to leave the parent's coverage."
Her reduced course load also cost her the Life Scholarship she won in high school, although the Pates appealed and half the scholarship was restored. They still fear that money could be withdrawn.
Dropped by insurers One day after she was hospitalized, Pate was dropped from her father's policy.
According to S.C. law at the time, 19-year-old dependents were eligible to be carried by a parent's plan if they were full-time students.
Then Devin had a 103-degree temperature and fluid build up. They tried to fill a prescription at Walgreens. It was no longer covered.
The medicine cost $40 a month with insurance, $4,000 without, Paige Pate said.
"When you are medically unable to attend classes, how can you penalize a young person? She's not in a position where she can lose that coverage," she said.
At about the time the 13-pound tumor was being removed from Devin's body in 2006, New Hampshire became the first state to enact "Michelle's Law."
It's named in honor of Michelle Morse. While a student at Plymouth State University, Morse was diagnosed with colon cancer. Her doctors advised her to cut back on classes because of the effects of the cancer and treatments.
But if she fell below full-time status, she would be kicked off her parents' health plan and would have had to pay much higher premiums for COBRA, an option that also faced the Pates in 2009. Pate was too sick to attend the College of Charleston but enrolled in classes at Horry-Georgetown Technical College to remain eligible.
Under Michelle's Law, a student can take up to 12 months of medical leave and remain covered under a parent's plan. It went into effect in New Hampshire June 22, 2006. At least 10 states adopted a similar law. In 2008, President George W. Bush signed a similar bill that passed with bipartisan support in Congress.
The law was designed specifically for cases such as Devin's. The federal law became active Jan. 1 -- three months after Devin Pate lost coverage. The S.C. General Assembly was not among the original 10 states, but legislators did pass Michelle's Law this year and Gov. Mark Sanford signed it into law a couple of weeks ago.
Had Devin been born 12 days later or her father's insurance renewal date had been Jan. 1 instead of Oct. 1, she would have qualified under Michelle's Law and remained covered. She wouldn't be facing between $10,000 and $18,000 in medical costs, which she accrued when she was kicked off her father's plan last fall, and her mother wouldn't be worrying about the $26,000 in claims that are still pending. Her insurance has paid roughly $28,000 in claims since last fall, according to MUSC.
A provision of the Affordable Care Act passed by Democrats this year and signed by President Obama beginning on Sept. 23 will extend and enhance Michelle's Law protection, making it possible for students to remain on their parent's plans until age 26 regardless of student status. According to the White House Office of Health Reform, the provision could help more than 4.7 million uninsured young adults.
Dozens of insurance companies have said they will begin honoring the provision early. BlueCross and BlueShield said its 39 companies would begin honoring the provision June 1 to "enhance and preserve coverage for as many Americans as possible" because it recognized many young people could lose coverage between now and September.
Paige Pate has coverage through BlueCross BlueShield of South Carolina, John Pate through BlueCross Anthem. Privacy laws prevented them from speaking directly about the case.
A spokeswoman for ABC Supply, John Pate's employer, said the company complies with all state and federal laws and will comply with new requirements on the effective date.
She did not address a question about the medical costs the Pates were left with during the three months Devin Pate was uninsured after her 19th birthday.
"Even if a patient has insurance, the patient ... always has financial responsibility for medical care," said Nancy Deptolla. "Our policy is to offer all associates and their dependents who become ineligible for medical coverage the opportunity [to] keep their medical coverage under COBRA for up to 18 months. This includes adult children who lose full-time student status."
John Pate believes Devin will continue to have coverage under his plan.
The Affordable Care Act is also designed to protect patients such as Pate. But just like Michelle's Law, it is not clear if Pate will be able to benefit from that law either -- because she has a pre-existing condition, the cancer she's been fighting since 2006. She had a more than 62-day gap in coverage, which means she may not be protected against pre-existing conditions clauses under the Health Insurance Portability and Accountability Act of 1996, commonly known as HIPAA. And pre-existing conditions bans won't be phased out under the recent health care reform act until 2014, though the federal government will spend billions to make high-risk insurance pools more affordable for the next three and a half years.
Though she regained some coverage Jan. 1 under Michelle's Law, an insurance company can deny claims for treatment of any pre-existing condition dating back for up to six months. She's covered if she falls and breaks an ankle but may not be for the cancer eating away at her.
And in order to avoid the pre-existing condition clause and regain full coverage under the 2010 Affordable Care Act, Pate may have to avoid coverage for six months -- even though she needs expensive, weekly chemotherapy treatments as well as multiple pain and other pills daily. Insurance companies can only invoke its pre-existing clause for six months before a coverage plan begins.
Paige Pate hopes Devin becomes eligible for disability, which comes with other insurance options. But approval could take up to a year.
Her mother feels trapped. And scared that she might lose her home or will struggle to pay bills.
She's also terrified that if she says the wrong thing, the insurance company would stop paying her claims and MUSC would stop treating Devin -- who woke up in such intense pain on a recent Monday morning despite high-doses of pain medication that her mother had to rush home from work and take her on an unscheduled trip to the ER at MUSC.
Paige Pate wonders if frayed communication between her and her estranged husband caused them to miss the fine print in the policies. In a panic she signed Devin up for her policy in February because she wasn't sure if his had been re-activated. That brought more fine-print provisions into play and it affects which policy is primary and which is secondary, an important distinction because of Devin's pre-existing condition.
MUSC is consulting with the Pates to allay some of their concerns, said Maggie Thompson, manager of the hospital's Patient and Family-Centered Care.
"Health care can feel like a complicated maze for patients. It can feel overwhelming," she said. "I wish there was a way to simplify it. We will work directly with the family to help them with any issues they have."
Paige Pate is also worried about the mortgage payments and the work time she's been forced to miss. Last year colleagues allowed her to borrow vacation days to spend time with her daughter in the hospital. Her vacation days have already been exhausted for this year.
"Devin's mom is worrying more than Devin," said long-time family friend Cindy Nolan. "She puts a smile on her face for Devin."
Still smiling Devin smiles, too. She smiled during a chemotherapy session as she exchanged jokes with her friend. She smiled when talking about the desmoid tumors growing inside of her and her still-to-be finished life goals, smiled when talking about the time she was so enraptured by the sounds of a CD she managed to get lost while driving in little old Aynor.
She smiles when talking about IHOP cheeseburgers and curly hair and smiles when she and Dunn hang out at Fatz Cafe in Conway or go to the beach or see a movie or when she's texting a mile-a-minute on her cell phone, smiles when remembering the days she and Dunn hated each other because of silly little boys.
As many questions surround her prognosis as they do her insurance coverage. Still, Devin smiles.
"I don't necessarily think that I will die from this," she said. "I don't have an expiration date stamped on the bottom of my foot. The only thing that worries me about dying is my family and friends crying and being upset when I go."
Contact ISSAC BAILEY at 626-0357 or email@example.com. He's the author of "Proud. Black. Southern. (But I Still Don't Eat Watermelon in Front of White People)."
To see more of The Sun News, or to subscribe to the newspaper, go to http://www.thesunnews.com/
Copyright (c) 2010, The Sun News, Myrtle Beach, S.C.
Distributed by McClatchy-Tribune Information Services.
For reprints, email firstname.lastname@example.org, call 800-374-7985 or 847-635-6550, send a fax to 847-635-6968, or write to The Permissions Group Inc., 1247 Milwaukee Ave., Suite 303, Glenview, IL 60025, USA.