Cancer is doubly hard for children in Montana.
Across the state, there are only two pediatric oncologists, and generally they only provide follow-up care. That means that, while adults with cancer can usually get comprehensive, start-to-finish treatment not too far from home, most children with cancer wind up in hospitals hundreds of miles away.
"The kids pretty much all go somewhere, at least at first," said Dr. Paul Kelker, a pediatric oncologist at the Billings Clinic. "Most of mine go to Denver."
Seeking answers about what was wrong with 3-year-old Kiersa, the Jacobs family of Belgrade ran the health-care gamut in Montana, but to no avail. Eventually, they wound up in Portland, Ore., where doctors diagnosed the little girl with Ewing's sarcoma last September.
After learning of the care she would need, Kiersa's parents, Jill and Nick Jacobs, packed up the rest of the family and all their belongings and moved to Oregon, leaving behind their house on David Drive, relatives, friends and the state where they'd spent their whole lives.
"Families are leaving the state," said Dr. Brian Abbott, Montana's other pediatric oncologist, based at the Great Falls Clinic. "They may just disappear to larger cities without any plans to come back."
That's true for the Jacobs, too. Nick and Jill don't know if they'll ever be able to move their family back to Montana.
"It's kind of hard to think about going somewhere so far away and trusting them to take care of you when (the system) didn't do so great of a job the first time," Jill Jacobs said.
STANDARDS OF CANCER CARE
After any child is diagnosed with cancer, the standard of care - set by the National Comprehensive Cancer Network, an alliance of 21 leading cancer centers - calls for a "tertiary setting," such as a teaching hospital, where there is access to a broad spectrum of specialists.
Access to specialists is critical because "children are not 'little adults," and pediatric cancer is not the same as adult cancer, said Sue Warren, a member of the Montana Cancer Control Coalition, a group formed in 2003 to reduce the overall burden of cancer for Montanans.
About 45 Montanans under the age of 19 are diagnosed with cancer each year, said Carol Ballew, an epidemiologist for the Montana Department of Public Health and Human Services.
Because pediatric cancer specialists are so few and far between in Montana, most of those children are referred to tertiary settings in Denver, Salt Lake City or Seattle, where pediatric cancer teams work in university hospitals, Warren said. That means families have to pick up and move, trusting that the health-care system in a far-off city will be able to help.
Montana does not track of exactly how many are referred out of state and whether they return. Bozeman Deaconess Hospital doesn't keep such records either, spokeswoman Connie Martin said.
There are two reasons why Montana's pediatric cancer resources are so limited, Kelker said. First, Montana's population of roughly 950,000 can't support the teams of specialists needed to treat pediatric cancer from start to finish.
"We've talked about having a children's hospital in Billings, but you'd only have six kids in it," said Kelker, who is treating nine patients.
In addition, the protocols for treating cancer change every year, making it impossible for a small medical office to keep up.
"That would be awful if I treated someone with an old protocol and they died," Kelker said. "In a university setting, you'd have every sub-specialist. Ideally, you'd need a team of at least three to 10."
Montana, which does not have a medical school, is one of just a few states that send children out of state for cancer treatment, Kelker said. North Dakota, South Dakota and Wyoming also do, but most of other states can treat their children closer to home.
"We're pretty unique, we're pretty rural," Kelker said. "You can get better care if you can centralize and have larger services."
DIAGNOSIS OBSTACLES
Even getting the right diagnosis for a child with cancer, especially one suffering from a rare form of cancer, can be an excruciating process in Montana, as the Jacobs learned.
Kiersa Jacobs first started complaining of pain in her bottom after she fell down at a local hot springs.
Her parents thought she had broken her tailbone, so they took her to an urgent care service. The doctor looked her over, said Kiersa was fine and sent her home.
But Kiersa's pain didn't subside. So a week later, her parents took her to Bozeman Deaconess Hospital. A doctor took an X-ray, but when it didn't reveal any broken bones, he sent Kiersa home.
Two weeks later, Kiersa's appetite was gone, she wasn't going to the bathroom regularly and her feet hurt. Her parents took her back to the hospital.
That time, a doctor gave Kiersa enemas, suppositories and dripped "Go Lightly," a fluid often used for colonoscopies, down a tube in her nose. The doctor also gave Kiersa pain medicine, hydrated her and kept her at the hospital overnight.
But the next day, even though Kiersa had a fever, the doctor sent her home.
A day later, Kiersa stayed up all night complaining of pain. When her parents took her back to the hospital this time, doctors ordered a CAT scan, which revealed a dark spot between her spine and pelvis that was later identified as a tumor.
Jill had tried earlier to demand an MRI, which is a more detailed scan than an X-ray-type CAT scan, but doctors were reluctant.
"You can't just say, 'I want an MRI,'" Jill said. "They don't want to just do an MRI. Especially in our case, when we don't have health insurance."
INSURANCE OBSTACLES
The family's lack of health insurance likely complicated matters. Dr. Nancy Maynard, a pediatrician at the Great Falls Clinic, said an MRI requires a doctor's approval because there are risks that come along with the exposure to radiation.
Not to mention, Maynard said, that an MRI is an expensive test.
But the Jacobs couldn't afford insurance. Nick worked as an electrician with his family's business. Just for Nick's parents to insure themselves, it costs $700 a month, said Nick's mother, Marcia Jacobs And that's with a $5,000 deductible.
Nick and Jill couldn't afford that kind of expense every month. Until Kiersa got sick, they had always paid their children's doctor bills directly.
The Jacobs are not alone. Montana has one of the highest rates of uninsured people in the nation.
Anywhere from 14 percent to 19 percent of Montanans n and 17 percent of Montana's children - have no health insurance, according to the Bureau of Business and Economic Research at University of Montana.
Nationwide, the number of children without health insurance has declined over the past five years. But in Montana, the number of uninsured children has risen by 10 percent, according to backers of the Healthy Montana Kids Plan, a ballot initiative designed to insure more of the state's children.
Fifty-three percent of Montana's uninsured people work for small businesses, said state Insurance Commissioner John Morrison. There's a waiting list of 700 companies for the Insure Montana program, a state initiative to help small businesses insure employees.
About half of all Montana businesses did not offer health insurance to their employees in 2006, and two-thirds of them cited unaffordable premiums as the biggest obstacle, according to the business research bureau.
And it's getting worse, not better. Between 2001 and 2005, the number of Montana employers that offered health insurance dropped nearly 14 percent, according to a study by the Robert Wood Johnson Foundation, a national nonprofit organization that aims to improve the health care system.
When Kiersa's medical bills began to add up, Jill sifted through pages and pages of forms to find other options to insure her children. But Nick's income topped the maximums for state and federal programs.
Guidelines for the Children's Health Insurance Plan in Montana, for example, require that a family of six, like the Jacobs, must have an adjusted gross income of less than $50,000.
Luckily for the Jacobs, after they arrived in Portland a social worker informed them that the state of Oregon's plan covers most medical expenses for all children under 6 years old. All they had to do was declare that they were Oregon residents.
The social worker filled out the paperwork, and even though the rest of the Jacobs family doesn't qualify, Oregon has covered almost all of Kiersa's medical costs.
TREATING CHILDREN AT HOME
As the Jacobs' experience shows, Montana needs a more comprehensive effort to treat children with cancer at home, said Abbott, the pediatric oncologist in Great Falls.
However, assembling and funding such an effort would require the cooperation of the Montana Legislature and the full support of all the communities within the state. And it may not address all the initial diagnostic needs.
"Because these cancers are so rare, Montana is unlikely to ever be able to support such a multidisciplinary team for the initial diagnosis of pediatric cancer," Abbott said.
But doctors at a large hospital could help with the diagnosis, then determine the treatment protocol and send instructions to a pediatric oncologist in Montana. Then the patient could, in theory, return to Montana for follow-up chemotherapy or other care.
The problem with that scenario is that many families who take their children to far-off cities for the initial treatment aren't even aware that follow-up care is available back home.
Abbott, who has worked in Montana for about a year, said he's never had a doctor in the state refer a pediatric oncology patient to him. His pediatric patients have come from families who found him on their own. As a result, he spends most of his time serving adults with cancer.
Sarah Blackburn, a pediatric oncology social worker in the Billings Clinic, said many people also don't know that Dr. Kelker is there.
Part of the problem is that there are few centralized resources for children with cancer and their families at the state level, Warren said. Pediatricians are the primary referral point. There is no liaison to help families find treatment options, support services, wig programs, camps or home-health services.
Given the reality of out-of-state diagnosis and treatment, the Montana Cancer Control Coalition is working on a travel resource list that would include information on regional cancers and options for housing and other services, Warren said. The group also hopes to eventually be able to help families with the costs of transportation and moving.
"The good news is that we have a low population of children with cancer in Montana," Warren said. "The bad news is that these children must leave home."
Amanda Ricker can be reached at aricker@dailychronicle.com or 582-2628.
Rules of Conduct
Welcome to the discussion.
Or, use your linked account: