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The crisis <strong>of</strong> the un<strong>in</strong>sured falls heavily on women: 13 million <strong>of</strong> the 40 millionun<strong>in</strong>sured are women; their children comprise another 10 million. And because womenare <strong>of</strong>ten the primary caretakers, they end up nurs<strong>in</strong>g un<strong>in</strong>sured parents and children.to get <strong>in</strong>to the system."By the end <strong>of</strong> 1994, Chad was wellenough to be hired as a courier forUnited Parcel Service. But <strong>in</strong> August '95,he jumped <strong>of</strong>f his delivery truck and somisgauged the height that he fell andripped open his knee. Aga<strong>in</strong> Kathryntook him to St. Charles, where he wastreated for superficial <strong>in</strong>juries. UPS,attribut<strong>in</strong>g the fall to poor vision, <strong>in</strong>sistedthat Chad get glasses or he would befired. When he discovered the company's<strong>in</strong>surance plan did not cover eye care, hedecided to quit for a job at Sears, whichpermitted him to obta<strong>in</strong> a store creditcard. He charged his eyeglasses.Kathryn now reflects on this jobchange. "Chad wasn't will<strong>in</strong>g 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 exam<strong>in</strong>ed him more carefully,runn<strong>in</strong>g a battery <strong>of</strong> tests, and was ableto diagnose the tumor. As she recalls, thedoctor told Chad, "You're go<strong>in</strong>g to die.You have three months left to live."That is the moment, as Kathryn canbest p<strong>in</strong>po<strong>in</strong>t it, that she becamepolitical. She learned how to bend thelaw and break the rules <strong>in</strong> order to getcare for her son. Her energy came notfrom any epiphany about the socialjustice pyramid and her place near thebottom <strong>of</strong> it. It came from the raw factthat her son wanted to live.She filed the paperwork so Chadcould receive Medicaid. Dur<strong>in</strong>g thisprocess, Kathryn, determ<strong>in</strong>ed to liftChad's death sentence, becamecaptivated by a TV news feature. AnOhio couple had brought their dy<strong>in</strong>gdaughter 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 <strong>of</strong> experimental procedures. Soa friend <strong>of</strong> Kathryn's created a cookbookto sell, the proceeds dest<strong>in</strong>ed for Chad.They canvassed neighbor<strong>in</strong>g counties,set up donation buckets, had cookbookdrives at the local school and scrapedtogether $9,000. Because these fundsneeded to be put <strong>in</strong> a trust <strong>of</strong> whichChad could not be the trustee, Kathrynhastily established a trust <strong>in</strong> Tonya'sname—unaware that such an actionwould jeopardize her daughter'seligibility for welfare.Kathryn borrowed the rest from herbrother-<strong>in</strong>-law and left for Houston withChad, who was now unable to walk.While Chad was be<strong>in</strong>g treated, hisMedicaid caseworker learned <strong>of</strong> thetrust fund. No longer considered<strong>in</strong>digent, Chad lost his Medicaid card.With the trust <strong>in</strong> her name, Chad's sisterand her son were then dropped from thewelfare rolls.The family cont<strong>in</strong>ued rais<strong>in</strong>g moneyfor Chad's care, but he returned fromHouston only marg<strong>in</strong>ally improved.Kathryn then brought him to St.V<strong>in</strong>cent's Hospital, a high-tech facility <strong>in</strong>Toledo. Remarkably, she found a radicalphysician there, Dr. Jonathan Ross, amember <strong>of</strong> Physicians for a NationalHealth Program, which lobbies forcomprehensive health coverage. Dr. Rossprescribed chemotherapy, which wassanctioned by the hospital bill<strong>in</strong>gdepartment even though Chad wastechnically un<strong>in</strong>sured. Kathryn,disput<strong>in</strong>g Medicaid's decision to dropChad, put the expenses on his expiredcard. St. V<strong>in</strong>cent's medical staff was mostconcerned about try<strong>in</strong>g 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 re<strong>in</strong>stated, but not until three daysbefore his death. "I expla<strong>in</strong>ed toeveryone, 'You're go<strong>in</strong>g 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 <strong>in</strong>unpaid medical bills.Kathryn's brush with rebellion isfad<strong>in</strong>g with the loss <strong>of</strong> her son—which isexactly why un<strong>in</strong>sured women rema<strong>in</strong>un<strong>in</strong>sured. <strong>Their</strong> political activities hangon the cycles <strong>of</strong> illness and <strong>of</strong>ten ebbwith the loss <strong>of</strong> a loved one. Kathrynwould like to help create change, whichis why she is tell<strong>in</strong>g her story. But sherema<strong>in</strong>s immersed <strong>in</strong> personal crisis,caught <strong>in</strong> a tangle <strong>of</strong> Medicaidpaperwork and meet<strong>in</strong>gs with a lawyerto assess St. Charles Hospital's liability<strong>in</strong> fail<strong>in</strong>g to diagnose Chad earlier.Clearly, the very nature <strong>of</strong> illnessconsumes time, a commodityrequired for activism. Dur<strong>in</strong>g Chad'sillness, Kathryn was a survivalist, do<strong>in</strong>geveryth<strong>in</strong>g she could to get by. Ideally(but perhaps unrealistically) familiesstruck by illness should work thesystem, as well as, organize politically <strong>in</strong>their communities.How can the un<strong>in</strong>sured susta<strong>in</strong> theirenergy? The difference between failureand success might be a major conceptualshift. Un<strong>in</strong>sured voters need to stopth<strong>in</strong>k<strong>in</strong>g along party l<strong>in</strong>es to effectchange. Instead, they need to startth<strong>in</strong>k<strong>in</strong>g <strong>of</strong> themselves (and organiz<strong>in</strong>gthemselves) as a s<strong>in</strong>gle vot<strong>in</strong>g block. Fortymillion strong, they would constitute thelargest s<strong>in</strong>gle voice <strong>in</strong> <strong>Am</strong>erica. In thisway, their <strong>in</strong>terests might effectivelycompete with those <strong>of</strong> the <strong>in</strong>surance andpharmaceutical lobbies, which doomedthe Cl<strong>in</strong>ton Adm<strong>in</strong>istration's nationalhealth reform efforts.In Kathryn Myrice's vehemence lies theseeds <strong>of</strong> the next health care revolution.Because ultimately, no one will careenough to change the system except thefamilies <strong>of</strong> those who are dy<strong>in</strong>g. •S p r i n g 1997 • O N T H E ISSUES 15
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