National Nurses United

Patients:5 2/8/08 2:43 PM Page 16 Thomas Wilkesu Denver, Colorado The problem for the Wilkes had never been that they did not have insurance; it's that theirs didn't do them any good. Nathan Wilkes, a computer network security expert, pulled in more than $100,000 a year at a Colorado start-up telecommunications company he helped build. He and his family had always enjoyed large-group coverage. Then his son Thomas was born in 2003 with severe Hemophilia A. When at age 1 Thomas became resistant to the clotting factor that he normally took for bleeds, his treatment became a lot more complicated and expensive. The little tyke can easily rack up at least $1 million in healthcare costs each year. Suddenly, Nathan's company insurance premiums with United Healthcare skyrocketed nearly 40 percent. In order to keep insuring its employees, the company had to shift to a PPO and to an extremely high-deductible plan for its workers. The year after, the insurer hiked premiums and prices again, and announced a $1 million lifetime cap on claims. The Wilkes had almost no options for insuring Thomas. They made too much to qualify for Medicaid, and the wait list for a disability waiver was five to six years. The state's insurance plan of last resort also has a lifetime cap of $1 million. He ended up starting his own company so that he could buy coverage under the guaranteedissue, small-group market. "We've got insurance. We've bought insurance and we've been getting insurance. Telling us we need to buy insurance doesn't change anything." oNataline Sarkisyan Nataline Sarkisyan, 17, died in December 2007 after being twice denied by her family's insurance company, CIGNA, for a liver transplant that had been recommended by a panel of doctors at UCLA Medical Center. The Los Angeles teen had been battling leukemia. She had earlier received a successful bone marrow transplant from her brother, but cancer treatments had damaged her liver. Her doctors determined that if she received a liver transplant, she had a decent chance of pulling through. CIGNA said no, that the operation would be "experimental." Desperate to save their daughter and sister, the Sarkisyan family rallied public support and outrage to shine a spotlight on CIGNA's policies. On Dec. 20, CNA/NNOC activist nurses organized the Sarkisyans, the Armenian community, and the public in a protest to pressure CIGNA to approve the transplant. It eventually did that same day, but it was too late. Nataline died that evening. "My beautiful girl passed away because our insurance company CIGNA denied our insurance," said Hilda Sarkisyan, Nataline's mother. "It could happen to any of you." I 16 REGISTERED NURSE W W W. C A L N U R S E S . O R G JANUARY | FEBRUARY 2008 ABOVE: JON ORLANDO Los Angeles, California

• Cover