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Family navigates pediatric cancer care and insurance struggles (With VIDEO)

Register-Herald - 6/10/2018

June 10--SANDSTONE -- CJ Sampson, a toothless, smiling 9-month-old boy, pushes his baby walker across the laminate wood flooring of his grandmother's home, in hot pursuit of a towering, fluffy dog named Oreo.

CJ looks like any other baby -- happy and healthy, exploring his surroundings. But CJ is missing his left eye.

He was recently diagnosed with retinoblastoma, a cancer that grows in the retina (a layer of nerve tissue in the back of the eye that senses light and sends images to the brain). The diagnosis required the surgical removal of his left eye, and six rounds of chemotherapy for his right.

Tonight, Burgandy and her mom, Beckie, will drive Beckie's 2004 silver Chrysler Pacifica, pushing 200,000 miles, nearly five hours to Cincinnati, Ohio, to meet with a specialist to find out if the first two rounds of chemo is working.

They're hopeful a tumor in CJ's right eye is shrinking. But even if the family is met with the best medical news, they're still left with a number of dilemmas.

The Cleveland, Ohio, hospital where his left eye was removed is considered out-of-network and therefore not covered by West Virginia Medicaid. And the Cincinnati specialist, an in-network provider, plans to retire in June, leaving the family with nowhere to go until a replacement doctor comes on board in October. No doctor in West Virginia is specialized to handle CJ's case, as retinoblastoma is such a rare form of cancer.

Also a worry, their medical bills are piling up. Without Medicaid coverage, the family owes more than $300,000 to the Cleveland hospital. And the family has been hit with a bill from a recent Charleston hospital stay, which Medicaid deemed "medically unnecessary."

----CJ's diagnosis wasn't immediate. When he was born, his left eye was enlarged, but the doctors weren't concerned. The condition, however, worsened as he grew.

No pediatricians are available in Summers County, population 13,239 in 2015. Of West Virginia's 55 counties, data from the West VirginiaBoard of Medicine and the West VirginiaBoard of Osteopathic Medicine shows 17 counties have no pediatricians and 19 counties only have one or two.

At first, CJ's family traveled to Raleigh County for pediatric care. The pediatrician assured CJ's mom, Burgandy, he would grow out of his eye condition. But she wasn't satisfied with that answer.

She then drove CJ to a Princeton pediatrician, who made an immediate referral to a specialist three and a half hours away in Morgantown -- a pediatric ophthalmologist who diagnosed him March 16 with retinoblastoma.

The Morgantown doctor referred them to Cleveland for further care. West Virginia is home to pediatric oncologists and pediatric ophthalmologists, several of whom accept Medicaid, but none could handle CJ's case.

St. Jude's Children's Research Hospital says retinoblastoma is rare, with roughly 300 cases nationwide each year. Most cases are diagnosed before a child is 3 years old. Sometimes the condition is genetic, while others have no family history of the disease. For CJ, it's genetic -- a great-great grandparent and a great aunt had the condition, too.

St. Jude's says if the tumors are contained within the eyes, 95 percent of treated patients can be cured. If left untreated, the cancer can spread all throughout the eye, to the brain, to the bones and to bone marrow.

If treated, many kids with retinoblastoma can retain the use of both eyes. Unfortunately, CJ's left eye had to be surgically removed. His eyelid simply remains closed now, a permanent wink. He'll soon be fitted to receive a prosthetic.

----Dr. Larry Rhodes, a pediatric cardiologist and Assistant Dean for Health Sciences at WVU Beckley, says cases like these aren't common, but they aren't exactly rare, either.

"Pediatric sub-specialists are primarily found in Charleston, Huntington and Morgantown," Rhodes says. "One reason I do clinics down here is because we don't have many in rural parts of the state."

The American Academy of Pediatrics (AAP) says there's a shortage of pediatric medical sub-specialists in many fields, as well as a shortage of pediatric surgical specialists.

"In addition, the AAP believes that the current distribution of primary care pediatricians is inadequate to meet the needs of children living in rural and other underserved areas," the AAP. org site says. "More primary care pediatricians will be needed in the future because of the increasing number of children who have significant chronic health problems, changes in physician work hours, and implementation of current health reform efforts."

The U.S. Census estimates West Virginia's population, as of July 2017, at 1.8 million -- 20.5 percent of which are individuals under the age of 18 -- the age according to kidshealth.org when most transition from pediatric to adult care. West VirginiaBoard of Medicine and Osteopathic Board of Medicine data shows the Mountain State is home to 318 pediatricians, with a majority clustered in Charleston, Huntington and Morgantown.

Rhodes says a significant part of general pediatric care is well child care -- routine checkups that can be conducted by a number of practitioners, including family practice physicians, physician assistants and nurse practitioners. But with every specialty comes more precise knowledge about a specific population, whether its geriatrics, obstetrics or pediatrics.

----CJ's condition -- bilateral retinoblastoma, meaning tumors were growing on both eyes -- required an emergency surgery at the Cole Eye Institute at the Cleveland Clinic.

His left eye was removed March 23, and doctors began addressing two tumors in his right eye. The smallest of the tumors was frozen, and CJ is still undergoing chemotherapy for the other.

"We got a call May 8 saying our appointment for the 11th was canceled because our insurance was not covering it," Burgandy said. "We've been fighting with insurance to get Cleveland approved, but they're an out-of-network provider."

Nine requests from Cleveland seeking out-of-network coverage for CJ were denied. After working with a case manager, the family was connected with an in-network provider in Cincinnati. But that doctor is retiring in June.

Dr. Rhodes says he understands the struggles with insurance. When he was practicing in Philadelphia, he remembers two heart transplants taking "a significant amount of jockeying" to get coverage from West Virginia Medicaid.

"When you're talking about a heart transplant, that's a significant amount of money, even when negotiating for cents on the dollar."

Providers, even in West Virginia, are under no obligation to accept Medicaid. Further, providers have the option of participating in a fee-for-service program or signing a contract with one of the state's four managed care organizations.

Rhodes says as a practitioner, he frequently is involved as a mediator between insurance companies and hospitals to try and find a solution for patients in need of care. He says he used to find it hard to comprehend why coverage couldn't be provided.

"The older I get, the more I see of the limited funds we have in West Virginia," he says. "Money for Medicaid comes from taxes from working people. As the population of our state dwindles, as the workforce dwindles, there's less money for those things."

For the upcoming fiscal year, state funds will account for approximately 26 percent of Medicaid dollars spent, while the federal match is 74 percent.

"The federal match is great," Rhodes says. "But the state has to continue to contribute their share."

----Burgandy, 25, is unemployed while she cares for her son, and his 2-year-old sister. Their father is out of the picture. Their grandma, Beckie, is helping the family out a great deal financially -- they're living with her for the time being.

CJ has been covered by Medicaid since he was born. Until his cancer diagnosis, Burgandy said she had no issues with coverage. But ever since, she says the process has been "a constant fight."

"Every day, it's phone call after phone call to doctors and insurance companies when I need to be focusing my full attention on him, and his 2-year-old sister. It's hard trying to explain everything to her and trying to take care of him when you're on the phone all day with insurance companies and doctors trying to figure out where we're going to get this little boy seen."

After his surgery, she found out insurance wasn't going to cover any of his hospital stay in the days leading up to the surgery, nor the cost of the surgery itself.

In email correspondence with The Register-Herald, the West Virginia Department of Health and Human Resources said, "Out of network (as well as select in-network) services require the member/provider to obtain prior authorization to receive the service, unless it is deemed an emergency service."

CJ's family heard back May 30 from an appeal to Medicaid -- even though the surgery was considered an emergency, it's still not being covered because the hospital is out-of-network.

"We have a bill that's six digits," Burgandy says, shuddering at the thought. "Every time I think about it, I want to throw something."

A couple providers unrelated to the Sampson case reached out to The Register-Herald, sharing concerns about difficulties getting Medicaid to approve treatment, and a cumbersome billing process. The DHHR said it could not address these concerns without specific names of patients (with their consent) and the names of providers and facilities.

As of last June, the Kaiser Family Foundation reported Medicaid and the Children's Health Insurance Program (CHIP) provide health and long-term care coverage to more than 564,000 low-income children, pregnant women, adults, seniors and people with disabilities in West Virginia. The report said Medicaid covers one in four adults; three in five low-income individuals; and one in two children in the state.

----During the May 23 visit in Cincinnati, CJ's family receives the best possible news. The chemo is working. CJ's tumor is shrinking. No new tumors have formed.

The specialist in Cincinnati is also agreeing to continue seeing CJ until the end of September, through his last round of chemo and until the new specialist is on board.

"This doctor being willing to stay until CJ finishes his chemo is a blessing," Beckie says.

But they still have a long road ahead -- in traveling for continued medical care, facing the medical bills from Cleveland, and additional bills they've since received.

Any time CJ has a fever above 100.3, his doctors have recommended he go immediately to the hospital. With chemotherapy, his immune system is weakened, and he's much more prone to infection.

The family recently received a bill from an April 20 in-patient stay at Charleston Area Medical Center. CJ was admitted for a viral infection. In the request for payment, Medicaid said the stay was "not medically needed."

After media coverage from WVVA in mid-May, the Sampsons received a little more than $300 in donations. But Beckie said that money went toward the expenses of the last trip to Cincinnati.

"It takes a little over $100 for gas to go up there, and that's at $2.79 a gallon. After that, I don't know. The Ronald McDonald House was completely booked, so we had to pay $71 for a motel room. After toll and food, it was almost $300."

Anyone interested in donating to the medical expense can do so via Go Fund Me -- gofundme.com/padhdt-family-needing-help.

For updates on CJ's health, the family has created a Facebook page called "Prayers for Baby CJ."

-- Email: wholdren@register-herald.com and follow on Twitter @WendyHoldren

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(c)2018 The Register-Herald (Beckley, W.Va.)

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