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

The crisis of the uninsured falls heavily on women: 13 million of the 40 millionuninsured are women; their children comprise another 10 million. And because womenare often the primary caretakers, they end up nursing uninsured parents and children.to get into the system."By the end of 1994, Chad was wellenough to be hired as a courier forUnited Parcel Service. But in August '95,he jumped off his delivery truck and somisgauged the height that he fell andripped open his knee. Again Kathryntook him to St. Charles, where he wastreated for superficial injuries. UPS,attributing the fall to poor vision, insistedthat Chad get glasses or he would befired. When he discovered the company'sinsurance plan did not cover eye care, hedecided to quit for a job at Sears, whichpermitted him to obtain a store creditcard. He charged his eyeglasses.Kathryn now reflects on this jobchange. "Chad wasn't willing to admithe was sick," she sighs. So, the Myricesfailed to seek out stop-gap measures likesick leave or disability. As Chad'ssymptoms worsened, Kathryn returnedwith him to St. Charles. This time a newdoctor examined him more carefully,running a battery of tests, and was ableto diagnose the tumor. As she recalls, thedoctor told Chad, "You're going to die.You have three months left to live."That is the moment, as Kathryn canbest pinpoint it, that she becamepolitical. She learned how to bend thelaw and break the rules in order to getcare for her son. Her energy came notfrom any epiphany about the socialjustice pyramid and her place near thebottom of it. It came from the raw factthat her son wanted to live.She filed the paperwork so Chadcould receive Medicaid. During thisprocess, Kathryn, determined to liftChad's death sentence, becamecaptivated by a TV news feature. AnOhio couple had brought their dyingdaughter to a Houston cancer specialist,Dr. Stanislaw Burzynski, who cured herwith experimental treatments.She resolved she would take Chad toDr. Burzynski. She needed close to$15,000 to get there and pay fortreatment. Medicaid would not coverthe cost of experimental procedures. Soa friend of Kathryn's created a cookbookto sell, the proceeds destined for Chad.They canvassed neighboring counties,set up donation buckets, had cookbookdrives at the local school and scrapedtogether $9,000. Because these fundsneeded to be put in a trust of whichChad could not be the trustee, Kathrynhastily established a trust in Tonya'sname—unaware that such an actionwould jeopardize her daughter'seligibility for welfare.Kathryn borrowed the rest from herbrother-in-law and left for Houston withChad, who was now unable to walk.While Chad was being treated, hisMedicaid caseworker learned of thetrust fund. No longer consideredindigent, Chad lost his Medicaid card.With the trust in her name, Chad's sisterand her son were then dropped from thewelfare rolls.The family continued raising moneyfor Chad's care, but he returned fromHouston only marginally improved.Kathryn then brought him to St.Vincent's Hospital, a high-tech facility inToledo. Remarkably, she found a radicalphysician there, Dr. Jonathan Ross, amember of Physicians for a NationalHealth Program, which lobbies forcomprehensive health coverage. Dr. Rossprescribed chemotherapy, which wassanctioned by the hospital billingdepartment even though Chad wastechnically uninsured. Kathryn,disputing Medicaid's decision to dropChad, put the expenses on his expiredcard. St. Vincent's medical staff was mostconcerned about trying to save Chad'slife. His mother would just let thegovernment catch up with her later.Chad died last September at home.Kathryn managed to get his Medicaidcard reinstated, but not until three daysbefore his death. "I explained toeveryone, 'You're going to wait until it'stoo late,'" says Kathryn. She was neverable to get Chad the right medication oreven the right portable hospital bedbecause she could not afford it. She hasbeen devastated by Chad's death. She isalso left with more than $30,000 inunpaid medical bills.Kathryn's brush with rebellion isfading with the loss of her son—which isexactly why uninsured women remainuninsured. Their political activities hangon the cycles of illness and often ebbwith the loss of a loved one. Kathrynwould like to help create change, whichis why she is telling her story. But sheremains immersed in personal crisis,caught in a tangle of Medicaidpaperwork and meetings with a lawyerto assess St. Charles Hospital's liabilityin failing to diagnose Chad earlier.Clearly, the very nature of illnessconsumes time, a commodityrequired for activism. During Chad'sillness, Kathryn was a survivalist, doingeverything she could to get by. Ideally(but perhaps unrealistically) familiesstruck by illness should work thesystem, as well as, organize politically intheir communities.How can the uninsured sustain theirenergy? The difference between failureand success might be a major conceptualshift. Uninsured voters need to stopthinking along party lines to effectchange. Instead, they need to startthinking of themselves (and organizingthemselves) as a single voting block. Fortymillion strong, they would constitute thelargest single voice in America. In thisway, their interests might effectivelycompete with those of the insurance andpharmaceutical lobbies, which doomedthe Clinton Administration's nationalhealth reform efforts.In Kathryn Myrice's vehemence lies theseeds of the next health care revolution.Because ultimately, no one will careenough to change the system except thefamilies of those who are dying. •S p r i n g 1997 • O N T H E ISSUES 15