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Felicia Pate comforts her 3-year-old son, Trent, at their home in Weaver. Trent was diagnosed with leukemia about four weeks ago. Photo: Stephen Gross/The Anniston Star |
Felicia Pate has a sad little boy on her lap. Trent looks lethargic and swollen, as if there were more pressure against his stomach and cheeks than his 3-year-old frame can bear.
“Why don’t you smile and take a pretty picture?” his mom asks gently.
He shakes his head and begins to cry.
“OK, you don’t have to if you don’t want to,” the mother says as she wraps her arms around him and rocks back and forth.
“I haven’t got anything, since he’s been diagnosed, to light up his eyes,” said his grandma, Penny Bowen, as she watches Trent, her own eyes looking weary.
Four weeks ago, Trent was diagnosed with leukemia. Four days is the longest he’s been home since, but this home is different from the one he remembers.
While mother and son were at the hospital, husband and dad Mark Pate moved their things from their house in Piedmont to a mobile home in Weaver, just down the street from Bowen, who is his mother. They needed Grandma close enough to care for 2-year-old Justin and 7-year-old Sam.
Bowen pays the rent at their new home, and she turned on the telephone, heat and power. The view outside is of worn mobile homes and a swamp-like puddle blocking the road. But inside it’s warm. Although hardly anything has been unpacked, there’s a Christmas tree in the corner, a Bible on the end table, and a plastic bag filled with medicine bottles on the counter.
The boys will have a good Christmas because ERA King Real Estate will buy their presents, as the company does for a family every year.
Money may be tight, but the family counts its blessings.
A month ago, the Pates didn’t have health insurance. Today, Trent is among the most secure class of child patients as far as insurance coverage is concerned – those who qualify for Medicaid.
Beyond the tragedy of having a child suffer from a catastrophic illness, experts say the tremendous cost of treatment can be a major burden for families struggling to navigate insurance policies and weather a bombardment of bills.
Those covered under Medicaid and the state’s health insurance program for children are spared that burden, but the cost of travel, child care, and time away from work can overwhelm a low-income family.
The lucky ones
When the Pates arrived at Children’s Hospital in Birmingham, oncology social worker Kay Free went to work.
Free, an employee of University of Alabama Birmingham Pediatrics, spends most of her time helping families survive the financial impact of a catastrophic illness.
“That’s the part that’s keeping the families awake at night,” she said.
Free quickly learned that the Pates had been covered under Medicaid before, but Mark’s income had increased and the children were moved to the State Health Department program, AllKids. When it was time to renew AllKids, the family didn’t have the premium, which is $50 or $100 per child, depending on income.
Felicia Pate estimates her husband, a logger, makes about $75 each day he works, and in a good year – not this one – he can work about four days a week, bringing in about $300 a week.
Because the family’s income had dropped after the children were last covered by AllKids, Free was able to help get Trent and his brothers back on Medicaid within a week.
The hospital’s social workers go through a similar process for every uninsured family. In 18 years, Free remembers only five families (aside from illegal immigrants) for whom she couldn’t establish some form of coverage, and Children’s has never denied care.
Families like the Pates are the lucky ones, Free said. Under Medicaid, everything is covered and paid in full, and the families don’t even have to see the bills.
The lower- and middle-income families trying to pay high private insurance premiums, deductibles and co-pays are the ones hit the worst, patient advocates say.
Most of them are billed by 10 different providers for services, each asking them to pay $50 to $100 a month toward their bills, Free said.
“Few families can handle that,” she said. “For a family to stay on top of billing is really a major time and energy and just emotional drain.”
AllKids, Free said, is the next best thing to Medicaid. It provides unlimited coverage with minimal premiums and co-pays, depending on income level.
Lees Sandlin, director of the Children’s Health Insurance Program for the Alabama Department of Public Health, said unlike private insurance, AllKids doesn’t have lifetime maximums and doesn’t consider pre-existing conditions.
The program was designed to catch the children who fall through the cracks because their parents earn too much to qualify for Medicaid.
To qualify for AllKids, for example, a family of four would have to make less than $37,700, but there also are deductions for parents who work and pay for child care.
Earlier this year, there was a waiting list, but Sandlin now is encouraging families to apply. As of the end of October, 61,679 children were enrolled, and the program can support up to 70,000.
Too much with too little
Even with the tens of thousands of Alabama children who have received benefits for the first time under AllKids, there are tens of thousands more whose working parents are stuck in a place where they make too much for public benefits and too little to afford private insurance premiums.
Struggling against the same undertow are the parents who juggle two or three part-time jobs, none of which provide insurance benefits to their part-time employees, said Dr. Lauren Smith, associate professor of pediatrics at Boston Medical Center.
And for those with employer-sponsored insurance, Smith said, access to care can still be an obstacle.
“There’s a tension between having a chronically ill child and employment, because most low-wage workers don’t have sick leave,” she said. “That means they miss work, and they miss income, and they get on their boss’ bad side.”
Free points out that even for those who have insurance and don’t have to worry about lost income, the share of care their insurer requires them to pay can be difficult for a low-income family.
Summer Lunsford of Anniston, now 15, had cancer of the uterus when she was 8 years old. Seven years later, her father, William Lunsford, said he still couldn’t get a private insurance company to accept her. Then in January of this year, she started having abdominal pain. The cancer had come back in one of her kidneys.
The family was covered under Lunsford’s program for retired, disabled veterans, Champ VA, but Free said the program required some high deductibles and co-pays.
“It has been pretty good, but there was a time when we had a prescription that cost around $8,000 and they wanted us to pay a co-pay of $2,000 before we could receive it, so Children’s Hospital gave us the medication we needed to sustain us,” Lunsford said.
He takes all of his bills to the social worker, and said the hospital has been great about giving them the best medicine at the lowest price they can afford. The hospital gives Summer chemotherapy as an outpatient service, so it’s less expensive.
For one week a month, they drive to Birmingham and back every day for treatment.
“It’s just easier to drive there and back than to spend $30 a night for hotel accommodations,” he said. “We understand that there’s a Ronald McDonald House, but they’re all full all the time. It’s very difficult to get into those places.”
Free said for situations like the Lunsfords’ she applies to the pharmaceutical companies’ free and low-cost drug programs, and she applied to some non-profits to help them with their travel expenses.
‘Take care of your own’
Even without the burden of hospital bills, drug costs, co-pays, deductibles and premiums, Free said, families like the Pates will suffer a significant financial blow from the costs associated with travel to Birmingham and lost income during their time at the hospital.
Penny Bowen heard that Trent had been accepted by Medicaid on the same day that a bone marrow test came back with no cancer cells.
“God is in heaven and all is well,” she proclaimed.
Maybe they didn’t need to ask anyone for help. She would pay whatever expenses her son’s family couldn’t.
“You know, you take care of your own,” she said.
Bowen’s Sunday school teacher at Halls Chapel Church disagreed, and wasn’t too shy to tell her so.
“I said ‘Penny you can’t do that. You can’t take care of everything yourself,’” Betty Hall recalled. “I said, ‘Penny, what are they telling you? He’s gong to have treatments for two years. Don’t you know that Mark’s going to have to take him every time and going to be out of work and it’s going to rain and snow this winter and he won’t be able to work.’”
Mark Pate works every chance he gets, but the paychecks from his work as a logger always have depended on the mercies of Mother Nature. Now, the days he’s with his son in Birmingham will add to the days when weather makes logging impossible.
Halls Chapel Church has put $1,000 in a trust fund at AmSouth Bank in the name of Anthony Trent Pate, and Hall wanted to encourage Bowen to ask for more donations.
“If this were short-term I can handle this, but this is going to be two years,” Bowen said. “So, we’re asking people for love donations.”
Bowen said any money in the trust would only be used for the family’s needs.
“Without this,” Felicia Pate said, motioning toward the roof her mother-in-law had provided. “We’d probably be sleeping in the car going through this.”
Felicia stands up, holding her boy, rocking him back and forth.
Trent is so swollen and cramped, Bowen explains, that when she stands up, it stretches his body out and makes his breathing easier.
The swelling is not from the chemotherapy, but from steroids. Soon he’ll be off the steroids and the swelling will be gone, but his light-blond hair will go too.
Felicia – like any mother – would take Trent’s health over any amount of money. That is what she prays for.
But these days, she can’t just pray for Trent anymore. She’s seen the children at Children’s Hospital who are sicker, families who are in worse situations.
So now she prays for all to get well.
“We’re holding on to God through this,” Felicia says.
She pauses, realizing she got it wrong.
“No, we’re letting God hold onto us.” |