The Cox Kids Website

THE COX KIDS HOMEPAGE About The Disease Fundraising Links Hunt of a Lifetime Our Story Wall Street Journal Disease Links Clostriduim Difficile Hunt of a Lifetime Photos Our Photos Updates





Wall Street Journal  other Links to Articles                   

Thursday March 5, 2009


By Vanessa Fuhrmans


Arden, NC


Chris and Vickie Cox's health insurance never covered the full cost of treating their children's bone-marrow disorder. They relied on donations from their church, neighbors and family to plug the holes in their coverage, which ran as high as $40,000 a year.


That safety net is now unraveling. The slumping economy is pulling down fragile networks of support that in better times could keep families with insurance but big bills from falling into a financial hole.


The three Cox children have a rare disease called Shwachman Diamond Syndrome, which curtails the production of bacteria-fighting blood cells and digestive enzymes needed to absorb nutrients properly. It can lead to life-threatening infection, bone-marrow failure or a deadly form of leukemia.


After Samuel, 7,Grace, 12, and Jake, 15 were diagnosed with the genetic disease earlier this decade, landing a job with good health benefits became the biggest priority for Mr. Cox. He gave up plans to run his own home respiratory-care business to work as a salaried medical equipment salesman. In 2006, the family moved to North Carolina from Kansas City t be closer to specialists at Duke University.


But the Coxes' insurance covered only part of the children's care, which includes regular gamma globulin injections to boost their immune systems. At times, the children have seen specialists outside their insurer's network, requiring the Coxes to pay 30% of the bills, The companies that have insured the Cox children deemed some of their treatments experimental, which they don't tend to cover.


Until recently, the Coxes stayed afloat on the patchwork of Good Samaritan efforts to rising home prices. The parish of their former church, Abundant Life Baptist of Lee's Summit, MO. Rallied around them, even after they moved from the Kansas City suburb to North Carolina. A medical fund set up by the church raised tens of thousands of dollars. A separate annual fund-raiser organized by the neighbors has generated more than $50,000. And the Coxes tapped more than $100,000 of equity from their former Kansas City home to finance travel to far flung hospitals before selling it in 2006.


But the economic crisis is rattling their makeshift network of assistance. A new Year's water skiing fund-raiser that raised $24,000 a year ago pulled in less than $11,000 this year. Monthly donations to their former church medical fund have dropped nearly 8-% from a year ago.


“There's not much in there right now” says Phil Hopper, the church's senior pastor. Many regular congregates at their former church work at Sprint Nextel Corp., which recently said it would eliminate up to 2,000 at its Kansas City headquarters. “It's not that they don't want to give money,” Mr. Hopper says. “People just don't have it right now.”


Family is also struggling. Mrs. Cox's sister, Machelle Riffe, and her husband, Jim, have given cash and plane tickets for their niece and nephews to see doctors. But Mr. Riffe a homebuilding contractor, has had to lay off four of his six employees in the past year. “I've been turning around in my brain how can we generate or raise more money,” says Mrs. Riffe,'but I don't know how.”

The Cox's face more than $40,000 in unpaid medical bills as the commissions that Mr. Cox makes on top of his $47,000 base salary dwindle. This is an average per year, the family faces, not counting what insurance isn't responsible for. To slash expenses, for the family is considering moving out of their rental home in the Blue Ridge Mountains and into their travel trailer.”We don't care where we live.”says Mrs. Cox, 40 “we care how the kids live.”

Stories like the Coxs are proliferating as the recession intersects with the growing number of families who, in better times, could cobble together support. The Commonwealth Fund, a private foundation that conducts research on health-care issues, estimated that as of 2007, 25 million Americans had to spend at least %10 of their income -%5 for low income families -on out of pocket medical costs. That's a %60 increase from 2003.

That problem is felt by some people diagnosed with more common ailments. When Molly Secours, a freelance filmmaker, fell ill with uterine cancer two years ago, her high-deductible insurance didn't offset her thousands of dollars in medical costs. But she was able to refinance the mortgage of her East Nashville home to pay some. Friends and local artists raised over $15,000as a fund raiser at the city's Belcourt Theater to help her keep up house payments and pay other medical bills as she recovered.

“I was so lucky to have that safety net when I did,' she says.”In these economic times, it would be very hard to pull off.”

Though she's in remission now, Ms. Secours still pays nearly $500 in out of pocket drugs each month and left over medical debt. That makes it harder to pay the higher monthly payments she accepted when she refinanced her mortgage . Having missed the last three payments on her $166.000 mortgage , she says she'll be foreclosed on later this month if she can't renegotiate payments with the bank.

Families typically have been able to make due as long as they remained employed and on a companies health plan, In the recession of 2001, for instance, those who didn't lose their jobs remained fairly insulated. That downturn came after a prosperous era in which employers expanded coverage and health benefits as they vied to recruit workers.

But employer-provided health coverage has since become costlier . Companies have steadily raised em;employees' premiums, delectables and co-payments to curb their own soaring health-care spending. That's left Americans with costly illnesses exposed to a much broader set of economic strains,

For the Coxes, events unfolding in their former hometown of Kansas City have quickly hurt their ability to pay for the care of Samuel, Grace and Jake. Former neighbor Rob Lytle, a donor to the family, has had to cut 25 out of 95 jobs since January at his health-care construction company. After financial markets went into a tailspin last fall, many of his hospital clients put building projects on ice. In recent years, he has donated thousands of dollars to the Coxes and provided tents, heaters and generators for a New Year's Day water skiing fund-raiser that neighbors organized. This year, though, he said, he had to reduce his donation.

One of the organizers of the water-skiing event, called “Freezin for Reason,” is Reece Wolff, a pilot, usually dons just swimming trunks instead of a dry suit to ski the nearly frozen Lake Winnebago. In December, though, Mr. Wolff learned that he and thousands of other employees were being laid off by ABX Air because the company's main transport parter, Deutsche Post World Net's DHL, was discontinuing its U.S. Shipping operations.

To brace themselves, the Wolff's halted all their usual charitable contributions, expects for a pilots' fund for children and the Coxes. Even that, though, had to be a”token amount” this year, he says. “It 's not what we'd normally do,” he says. Mr. Wolff has since been hired to fly by Virgin America, but at a fraction of his former salary.

The Coxes felt each supporter's financial struggle. As they juggle mounting medical bills, their water has been turned off twice and their trash service was halted until they paid their outstanding bills.

As his sales get tougher, Mr. Cox now worries he may lose his job-and health coverage. Regardless, the family is making contingency plans to move into their vacation trailer. By staying in the camp sites, or on relatives land back in Missouri, Mrs. Cox estimates they could save at least $600 a month. Or they might move closer to their specialist at Cincinnati Children's Hospital.

“Sometimes it feels like the financial strain is shadowing what our kids are going through,” says Mrs. Cox.

We thank all who have writen about us. We have a few reason for geting the story out, one to save our kids and two, making people aware of such rare diseases, issues with payment from insurance companies, high premuims and deductables, things simply not covered and of course, Cobra along with the chance of everytime our name is out, discrimination for work.