I Am Beautiful: A Celebration of Women in Their Own Words

Desperate Measures:A mother battles a sick systemby Katherine Eban Finkelstein"Don't judge me by my house," saysKathryn Myrice, 42, in the airless clutterof her clapboard home on the edge ofOhio farm country. In the summer-bakedinterior, we wind through an obstaclecourse of illness. The small frontentrance hall has been converted into asick room, where her 19-year-old son,Chad, lies in a hospital bed. Light burnsthrough the small screen windows. Acool wash cloth covers his face, which isswollen from medication.Kathryn, coping with her son's fastmovingbrain tumor, leads me into herkitchen. At the table, amid strewnashtrays and stacks of medical records,sit three generations of family with nomedical insurance: her sister, Julie,wheelchair-bound (years ago, she wasshot by a jealous boyfriend); Kathryn'steenage daughter, Tonya, feeding herbaby son, Justin, perched in a high chair.Chad hollers out, "Mom," and Kathryngets up. "Having a brain tumor doesn'taffect your lungs," she says, her blue eyeslighting up behind pink glasses, herstenciled eyebrows rising. After giving herson a fresh washcloth, she returns to thetable. "I don't care if there are disastersstacked up to the ceiling," she says. "Ihave one function in this world right now,which is to take care of my son."Despite her fortitude and good humor,Kathryn is, in fact, desperate. Her son isdying and neither of them has healthinsurance. She forages constantly forcompassionate doctors, negotiatesresources and does end runs around anunresponsive system.Kathryn Myrice's predicament is onesmall ripple in a deepening nationalcrisis. An estimated 40 millionAmericans, almost one-fifth of thepopulation, lack health insurance,according to the Census Bureau. Thisnumber is climbing by two million ayear. New census figures reveal that onany given day, 61 million people areuncovered at least briefly after changingor losing their jobs. Because half of themare full-time employees, one recessioncould spike this number by 10 million.Behind these staggering numbers,however, is a crisis that falls heavilyon women: 13 million of the 40 millionuninsured are women; their childrencomprise another 10 million. In addition,26 million women are insured byMedicaid, the federal-state healthinsurance program for the poor. Thosekicked off welfare in the wake oflegislative reform will likely lose theirMedicaid entitlement and join theuninsured. And because, like Kathryn,women are often the primary caretakers,they end up nursing uninsured parentsand children.Despite a recent wave of incrementalhealth reforms, uninsured women andtheir struggles remain invisible. The new48-hour laws, which require insurers topay for two-day hospital stays forchildbirth and mastectomies, supportwomen who are already insured. TheKennedy/Kassebaum legislation, whichguarantees employees who change jobsthe right to new insurance regardless ofpre-existing conditions, willpredominantly help men, who are farmore likely to have health insurancethrough their employers.Also, the final bill does not regulatethe cost of insurance, which is typicallyTHAT\W0ME-K1l-f-'i 4. uJOiUvm.»nhigher for women of child-bearing agewho need regular checkups, and foremployers who hire such women.Moreover, many insurers either refuse togrant policies, or make themprohibitively expensive, for women withpre-existing conditions. Astonishingly,many insurers include domestic violenceas a pre-existing condition.With a system that so vigorouslyexcludes women, the fallout is far morethan payment and debt. The issue is,literally, a matter of life and death—asKathryn Myrice learned. When Chadsuffered his first symptom—a seizure in1993—doctors at a free clinic referredhim to St. Charles Hospital, a smallcommunity facility outside Toledo. Thedoctor who read his test results thereinformed Kathryn that her son was"healthy as a horse."However, because they weren'tinsured, St. Charles's doctors refused totake a magnetic resonance imaging test(MRI), which would have been the bestway to diagnose Chad's tumor. "Theytreat you like dirt," Kathryn recallsgrimly. "I couldn't say to them, "This isneurological. Take an MRI.' Nobodywould listen to me."Increasingly, such high-tech care isreserved for insured patients, and theresults have become painfully clear. Theuninsured are 25 percent more likely todie of their illnesses, and three timesmore likely than insured patients to diewhile in a hospital, according to a recentstudy in the New England Journal ofMedicine. As well, the uninsured oftenseek out care too late, when their diseaseis far advanced. As Jim Tallon, presidentof the United Hospital Fund, explains:"People who are uninsured often look atthe economic barrier and wait too longT'S MO£EL-IK.E WE'VE COMEWECA-W OlEKATHERINE EBAN FINKELSTEIN,a contributing editor to ON THE ISSUES, isan investigative journalist who writes frequentlyon health-care issues.1.4 ON THE ISSUES • Spring 1997