Issue link: http://read.dmtmag.com/i/67888
independent decisions they have to make and things that are out of the ordinary. Th e system wants, above all, for you to get in the system, to be systematized." Gaines works full-time and full-throttle at the CPP, which, in a nutshell, strives to empower patients with life-threatening medical conditions. With the support of the CPP, clients are shep- herded through the health care system as they learn to be strong self-advocates. Many of the initial hurdles involve learning the system itself. issues in health care and patient-centered care. Students are of- fered opportunities for training and for-credit volunteer work at the CPP—giving them a peek behind the curtain of patients' lives and the health care system's status quo. Gaines is also involved in pressing for policy initiatives within health care organizations and on a more public level. After 11 years of patient advocacy, the results of their work have Th ey receive personalized guidance in managing all the mov- ing parts—clarifying diagnoses and treatment options, making informed medical decisions, gaining access to quality care, and sorting out fi nancial challenges. But the CPP also helps patients face the emotional underside of the ordeal in daily life, teaching them and their families to funnel their energies into tackling man- ageable challenges. "Th ere are two big problems [for people facing serious illness]," Gaines says. "One is the terror. It's just so scary, and fear is such an energy-suck. It doesn't leave you much room for anything else. We try to get people to breathe and get rhythmic again—back to this plane. It's hard, but sometimes you can just sort of reach your hand [out] and people will come down." "…I was gonna do rippled outward. When the CPP was founded, there was only one other college in the country doing advocacy education at the grad- uate level. Now numerous education and training programs are fl ourishing and even professional associations for patient advocates are being established. But the fi eld is still relatively new and needs tending. Continuing its tradition of trailblazing, the CPP recently unveiled national initiatives to that end, offering a new e-learning curriculum as well as formally assessing and documenting the im- pact of advocacy services. Gaines hopes the CPP will serve as a national model for groups around the country. Some may call it lofty, but Gaines is steadfast, her motivation is her personal experience, a true belief that the system can be better, and a solid respect for caregivers in the medical fi eld. Ask who saved her life and she's quick to give two particular anythin g. I was at least gonna die trying." of mostly by goodhearted people who don't themselves want to be treating you like a widget, but they've got stuff on their plates, too. It's both about trying to work with people on the terms of their jobs and situations and surroundings—it is a health care system—while also trying to make sure you get what you need when you need it." Th e changes come in small steps. Recently a billing employee at a doctors fi rst billing. "You have to be empathic," she says. "You're being taken care local hospital called Gaines to talk with her about a patient's insur- ance claim being unjustly denied. He didn't feel right about letting it rest and immediately thought of the CPP. Gaines feels that's a huge step, when solution-seeking and recognition of injustices is coming from within the system itself. "Th at's big," she says. "Th at's when you feel like you're really making a difference." Gaines' children are now 18 and 21. Having lived to see them grow up is the win that gives her the most joy of all. "I remember being on my knees next to my bed, praying that I ly cancers, organ failure, serious motor vehicle accidents—and usually fi nd their way to CPP through word of mouth. Th ere to greet them is a team of trained graduate students who fi eld inqui- ries and present the cases to the CPP staff—including Gaines and several other lawyers, medical professionals and more—who deter- mine whether the CPP can be benefi cial, either proceeding with a case or guiding the patient down other avenues for help. Th e ultimate goal—to help the patients navigate the maze of health Th e patients she crosses paths with face myriad diagnoses—dead- care—is simple enough. But CPP also strives to serve a larger mis- sion: to select a small number of cases that could lay the ground- work for broader educational or policy change. Gaines wants to get the players to rethink the playing fi eld. It starts with her other job—that of professor—where she reach- es students studying in fi elds that touch the lives of the seriously ill (think medicine, law and social work) in classes on consumer 46 BRAVA Magazine May 2012 could see my kids start school, just start school. Now? I want to meet my grandchildren, if I get to have any. I want to live to be an old, wise woman. But I already got what I really wanted. Th is is gravy," she adds, looking around. "If somebody said to me tomorrow you've been diagnosed again, I would do what was reasonable to try to live," she continues. "I'm not saying I wouldn't fi ght, but boy, I guarantee you on my last day I would say, 'You kidding me? I got 17 years.' Th at's a crazy, crazy thing for someone who had ovarian cancer in her liver." It's now I realize that the laid-back woman who'd started this interview in repose with her hands behind her head, has been lean- ing toward me for over an hour, her whole body animated with an incredible range of emotions. Now, this fi erce, funny, spirited woman leans back again and quiets. Her hands go back behind her head as she fi nds words to sum it all up. "Being able to create something that gives meaning and moment to an experience that changed my life," she says, "and hopefully tries to ease the burden for others, tries to train people to pile on less of a burden to people that are already suffering? I have no right to ask for anything else, and I don't feel the need. It's all gravy now. It's just a total privilege to do what I do, an unimaginable privilege." •••