Health Reform

For close to five decades, Roger Griffin, 61, had a job vital to US national security.  Like his father and grandfather before him, and like 340,000 fellow Kansans, he was a grain farmer doing his part to feed America.   

Big, strong and square, with a shock of white hair and a straight-ahead manner, Griffin rose before dawn and labored till dark, working 2000 acres of wheat, milo, corn and soybeans outside Lyons, pop. 3732.  Griffin grew up on a family homestead a mile from the site of the storied Cow Creek trading post on the Santa Fe Trail. With a teenage daughter at home, plus three grown children, seven grandchildren and elderly parents, all within driving distance, Griffin and his wife Susan were deeply committed to preserving the family farm.  As president of the Rice County Farm Bureau and a member of the state farm bureau’s political committee, Griffin traveled to Topeka and Washington to tell lawmakers about the facts of life in the Great Plains in the age of climate change and globalization.  

But in 2001, Roger Griffin contracted West Nile virus, probably from a mosquito bite, developed complications and found himself facing an obstacle he hadn’t counted on:  crushing medical debt.  Griffin thought he had good health insurance and still has no complaint about his coverage.  Even so, by 2006, his out-of-pocket medical expenses for deductibles, co-pays, prescription drugs and out-of-network charges for specialists had mounted to more than $100,000.  At one point, he fell about $1,000 behind on his payments to the local medical clinic.  Clinic administrators, located in a distant city, sent his case to a collection agency and shut him out.  "We scraped the money up and got the bill paid, but they wouldn’t let me see the doctor," says Griffin.  “I’ve known people with a dollar of debt who weren’t allowed to come see the doctor.”  For the Griffins and other residents of Rice County, the only alternative to the local clinic was to drive 75 miles to Wichita.  

Such unforgiving practices strike a discordant note in the American heartland, where people have traditionally looked out for one another.  In fact, residents of Kansas are better off than much of the rest of the country:  according to US Census Bureau data, just 11.1 percent of Kansans have no health insurance, compared to 15.9 percent of all those living in the US.  But Kansans, like other middle-class Americans, are discovering that often their health insurance doesn’t come close to covering their medical bills.  Increasing numbers of families are going deep into medical debt and losing access to health care.  

“Generally people thought that this was a poor-person issue,” says Corrie L. Edwards, executive director of the Kansas Health Consumer Coalition. “But in reality, it is not.  It’s an every-person issue.” 

The Public Welfare Foundation’s Health Reform Program focuses on building state-based consumer organizations that represent the concerns and needs of people like Roger Griffin.  In Kansas, the Foundation, in collaboration with the United Health Ministry Fund and the Sunflower Foundation: Health care for Kansans, helped start the Kansas Health Consumer Coalition and has awarded it $152,000 in grants since 2005.  Community Catalyst, a Boston-based national health reform advocacy organization that has received nearly $1.5 million in Foundation support since 1999, has provided the Kansas organization with technical expertise and  organizational development assistance tailored to the particular needs of Kansas health care consumers.  

The Kansas coalition has collaborated with another Foundation grantee -- the Access Project of Boston, a research arm of the Schneider Institute for Health Policy at  BrandeisUniversity – to produce data and analysis aimed at educating policymakers about problems faced by ordinary Americans who work hard, pay their bills, live prudently but can't cope with the financial burden of a serious illness in the family.

In 2006, the Kansas coalition and the Access Project produced a study entitled Playing by the Rules:  How Medical Debt Threatens Kansans’ Healthcare Access and Financial Security.  This survey found that 51 percent of Kansas patients with health insurance had been pushed into medical debt.  When uninsured people were included, 63 percent of the patients reported medical debt.  Nearly half those surveyed said they had delayed seeing doctors or obtaining preventive care such as mammograms for fear of going deeper into the red. “The consequences of medical debt can be serious and far reaching,” the report said, “Most directly, those with medical debt experience diminished access to care. However, many are also afflicted with a host of financial problems that can undermine their and their families’ economic security. These include being unable to pay for basic necessities, using up all of their savings to pay for medical care, being denied employment, and being turned down from mortgages or renting homes because of damaged credit.” 

A second Kansas coalition-Access Project report, Losing Ground:  Eroding Health Insurance Coverage Leaves Kansas Farmers with Medical Debt, found that 29 percent of Kansas farm families were in medical debt.  Some rural families overwhelmed by debt were being stranded with no local health care at all. 

“The unfortunate but very common practice in Kansas,” says Edwards, “is that when you have not paid your bill in full, a doctor’s office does not have to see you, even if it has been treating you for years.  Where doctors are few and far between, people have to drive hours and hours to a different town to be seen by a doctor.” 

The Kansas coalition has mounted an education campaign to warn the public of the pitfalls of medical debt and is urging hospitals and other medical providers to engage in “price transparency,” offering consumers more information about planned medical services so that they can anticipate and cope with the resulting bills. 

But for most people, some trips to the doctor can’t be planned, and cost-consciousness won’t solve the underlying problem of soaring health care expenses for diagnosis and treatment of catastrophic or chronic illness.     

Policymakers and opinion leaders in Kansas are debating how health insurance coverage might be broadened to help middle-income people -- sole practitioners, small business owners and their employees, temporary and seasonal workers and farmers -- obtain affordable insurance that covers their needs.  No single model has emerged as the consensus choice, and, says Edwards, “Kansans are generally conservative in nature, and we’re a state that does not much care for mandates.  However, I think that almost everyone would agree that we’ve got a real problem with the rise in health care costs and the rise in insurance costs.  Health care has gotten so outrageously expensive that it’s impossible to ignore. It’s become a very large economic issue.” 

Roger Griffin’s entanglement with the health care system began one day in 2001, when he came down with a high fever and aching joints.  He figured it was one more bout of the flu. Only the symptoms didn’t go away.  “I couldn’t work on machinery,” he says.  “I couldn’t get down and back up.  I said, why am I so tired?"  

His family physician thought that Griffin had West Nile virus.  But the disease was unknown in Kansas at that time, so public health authorities insisted that the diagnosis be confirmed with rounds of visits to specialists and dozens of expensive, high-tech tests.  The family medical insurance plan, provided by the company where Susan Griffin works, covered a percentage of the costs, but the out-of-pocket costs piled up and, combined with crop losses due to bad weather, tanked the family budget.  

Meanwhile, West Nile was becoming epidemic.  In 2002, public health officials in Kansas recorded 22 cases, including Griffin’s, up from zero the previous year.  The next year, Kansas’s West Nile count escalated to 91 cases, including four deaths.  By early 2007, according to the U.S. Centers for Disease Control and Prevention, 237 Kansans had come down with West Nile virus, and 11 of them had died of the disease. 

Griffin developed a common complication of West Nile, chronic fatigue syndrome, but he counted himself luckier than some:  172 Kansans, including several farmers of his acquaintance, had suffered dangerous and long-lasting side effects of West Nile in the form of meningitis and encephalitis, inflammations of the brain and spinal cord.  He knew a number of farmers who had been forced to declare bankruptcy and sell their farms to settle outstanding medical bills.  The Griffin family house was paid for, and, while some of the farm was encumbered in debt, Griffin was able to meet the payments without selling off any acreage.   

Still, chronic fatigue changed Griffin’s life forever.  “Every muscle aches, every joint aches,” he says.  “It’s not severe, but it’s there, and it wears on you.”  In the spring of 2006, he made the painful decision to abandon a way of life he had known since he was old enough to toddle around behind his father, now 91, and mother, now 85. 

“I didn’t want to give up farming, but I got to the point that I couldn’t physically do the work I needed to do, to make my operation successful,” he says.  “I’ve gotten rid of my machinery, and I have my land rented out to somebody else.”  To make ends meet and to keep busy, Griffin has taken several part-time jobs -- as a substitute teacher, a school bus driver and data input specialist. His health insurance remains in force, thanks to his wife’s job, and the clinic is allowing him to see his doctor again.