Jeff Miller/University of Wisconsin-Madison
Meg Gaines: 'When you get diagnosed with a life-threatening illness, it's like you get hurled out into space.'
Pam Thompson's February 2006 breast cancer diagnosis had been the shock of her life. But after a year of treatment, she thought the worst was over. The 50-year-old Sun Prairie woman had no idea a fight remained, on a front she never expected.
"I thought I had good insurance," says Thompson, who now realizes the commonness of her mistake. "Everybody thinks they have good insurance until they try to use it."
Thompson was covered through her husband's employer, which participated in a self-funded plan. After Thompson's lumpectomy and between her first and second rounds of chemotherapy, this employer switched insurance companies. The problems with the new provider began almost immediately.
"There was always something wrong with each claim," says Thompson. "Nothing ever went smoothly. Nothing."
To remain in-network, Thompson had to switch hospitals and oncologists. The nearest in-network radiation treatment was in Milwaukee; though the insurance company eventually approved out-of-network treatment in Madison, this created what she calls a paperwork nightmare.
Thompson filled an entire box with correspondence over denied coverage and disputed treatment. Eventually the insurance paid, but it was exhausting.
"Dealing with this," she says, "was worse than having cancer."
In 2007, Thompson's coverage for a routine mammogram was denied. After a full year of fighting, her insurer paid the claim, and then the same thing happened in 2008. Thompson stared at the policy language stating that annual mammograms were covered. She was baffled, and couldn't get a straight answer from anyone at her insurance company.
Thompson made countless phone calls and scoured dozens of websites seeking answers; that's how she found the University of Wisconsin Center for Patient Partnerships. Free of charge, a law student advocate assigned to her case took over her struggles with paperwork and phone calls.
After a month spent combing through Thompson's 1,000-page insurance policy, the student solved the mammogram puzzle: Thompson's employer and insurer could legally reject her annual mammograms because, after a breast cancer diagnosis, the procedure is coded diagnostic, not preventative. They'd only paid in 2007 because Thompson had, as she puts it, "put up such a battle."
Thompson will likely have to pay for her own mammograms for the rest of her life. But at least now she knows why.
"I'd probably still be trying to find an answer if it wasn't for the center," says Thompson. "I'd still be on the phone."
In the vortex
The University of Wisconsin Center for Patient Partnerships provides pro bono advocacy services to people with life-threatening or serious chronic illness. It operates out of two small offices on Bascom Hill.
Though housed within the UW Law School, the center is a part of the schools of Law, Medicine and Public Health, Nursing, and Pharmacy. It does not receive university funding; approximately 80% of its $550,000 annual operating budget comes from private donations. The other 20% is from grants, including two from Susan G. Komen for the Cure Madison.
The center has three full-time employees: director and founder Meg Gaines, a UW Law professor; associate director attorney Sarah Davis; and an administrative assistant. They work with a staff of five part-timers, including a lawyer, a mental health nurse, a physician and a social worker.
Investigating insurance-claim denials is just one of the advocacy services the center provides. It also helps people deal with the confusion and trauma of being diagnosed with a serious illness. Its experts and volunteers will walk patients through the available details, research available options and help formulate treatment plans.
"When you get diagnosed with a life-threatening illness, it's like you get hurled out into space," says Gaines. "One of the things we do is just reality check with people. Give them a super-speedy sense of how to navigate the health care system so they can understand what they're told, verify the information they're given and then make decisions that are consonant with their values."
UW graduate students earn credit acting as patient advocates. The fall 2009 semester program includes 17 students of political science, public health, medicine, law and pharmacy.
Gaines believes these students will experience a unique, cross-discipline perspective on health care advocacy that will forever inform their careers - especially if they end up being health care providers.
"I think most providers are not educated in medical and nursing school to understand the financing realities of the health care system," says Gaines. "If I'm an OB/GYN and I come to deliver your babies and I don't understand anything about insurance, then I'm liable to do all kinds of things that are a big headache for you without having any idea I'm doing it."
Gaines is herself a survivor of ovarian cancer. In 1994, she learned the disease had metastasized to her liver, where her doctors believed she harbored as many as 12 tumors.
"I was told to go home and think about the quality of time I had left, not the quantity," says Gaines, whose children were then ages three and almost one.
Gaines found herself making decisions she didn't feel qualified to make, and she quickly learned she was the primary advocate for her health. In a subsequent, last-ditch surgery, doctors were stunned to discover that there was only one tumor, not 12, and eventually Gaines recovered.
"In the 18 months that I was in the vortex of health care, I learned a lot," says Gaines. "I was subject to the highlights and the lowlights of health care in the United States, even with insurance."
Afterward, Gaines started dropping in on other patients with similar diagnoses, performing what she calls "knight in shining armor" services: sharing her hard-won knowledge; holding hands and giving comfort; making phone calls to reluctant insurance companies.
"I got to personify hope - which is, as far as I know, the greatest gig, paid or unpaid, in the world," says Gaines. "But I quickly realized no one or two people could do this for others. You needed to educate the populace to do it for themselves."
Gaines began brainstorming weekly with colleagues as to how things could be different. One year later, in 2000, the Center for Patient Partnerships was born.
In 2008, the center helped 327 patients from all over the United States with life-threatening or serious chronic illnesses, all free of charge. In some cases, the center's staff and volunteers simply helped patients understand the process and supplied them with the latest research. In other cases they kept track of mountains of paperwork or logged hours on the phone with insurance providers.
"My perception is we have extraordinary success with insurance companies," says Gaines. "Several times a week a student will come up to me and tell me about a $13,000 bill wiped out, or a denial overturned - because we're persistent, and they know we're reasonable and right. And because we're not on the other end of the phone terrified and sick and exhausted."
Andrea Kendall, a Milwaukee Public Schools teacher, thought she had fantastic insurance, through Aetna. She spent her summers volunteering as an English teacher in the Dominican Republic, and in summer of 2007 she contracted dengue fever.
"It's not considered a high-risk zone," says Kendall. "It was just a really unfortunate coincidence."
Kendall endured visits to three different Dominican Republic hospitals, the draining of several organs, the removal of her gall bladder and fever-induced seizures.
"I was too sick to travel back home for treatment, but my family thought that best anyway," says Kendall. "My parents both work at Mayo, and consulted with their colleagues. They said as hard as it was to have me away from them while I was sick, I should stay with tropical doctors who know how to treat this disease."
In the Dominican Republic, all medical care must be paid for up front. For instance, if a blood test is ordered, the patient must pay before the procedure is done. Kendall quickly spent all her cash, drained her savings, and racked up serious credit card debt. Despite being gravely ill, she kept every receipt and slip of paper.
Far from fully recovered, Kendall rushed back to Milwaukee to start the school year, so as not to compromise her coverage.
"Then Aetna denied my claim because I didn't seek pre-approval," she says, explaining that she was too ill to do so.
Kendall says Aetna has continued to deny her claims for a variety of reasons: "Not the right paperwork. Can't read the paperwork. Don't have this document, don't have that document. And yet I know I have a sufficient amount of documentation, why I was there, what I was treated for, how much I paid."
Kendall's health-care bills totaled nearly $20,000, and more than two years later, she has yet to be reimbursed. After calling dozens of attorneys, she found the Center for Patient Partnerships. Now two UW students are fighting on her behalf, making persistent phone calls, matching up paperwork, tracking down answers.
"Now I know I'm not alone, that's the biggest thing," says Kendall. "I couldn't even get a copy of my health insurance policy before; the district wouldn't give it to me. The center got it. Big companies don't want to listen to little people. I'm not the only person this happens to."
Scot Roskelley, a communications director for Aetna, says Kendall's claim was denied for the final time in 2008 after a request to the Dominican Republic hospitals for specific documents was ignored. He cites an extensive list of requested documents, including "the patient's complete chart including daily notes by attending physicians" and "a copy of all diagnostic and laboratory test results, including X-rays and X-ray reports; operative reports; and pathology reports."
Roskelley says Aetna will reopen the claim at any time if Kendall or the hospitals produce the requested paperwork. But center reps says the company's document requests are unreasonable.
"If Aetna could be more flexible in their requirements, I think they would see that we have sufficient documentation of what medical procedures were done," says Anna Graupner, one of the students assigned to Kendall's case. She says Aetna declined to accept alternative documentation, including a DVD of Kendall's gallbladder removal surgery.
Gaines hears such stories all the time. She calls it "yet another clear incidence of insurance companies not being providers of care, but rather middlemen trying to make money."
It can happen to anyone
Pete Daly, an engineer and melanoma survivor, volunteers 20 hours a week as a Center for Patient Partnerships advocate. He's seen more than enough to convince him of the need for reform.
"The health care system is broken, and it's broken for everybody," says Daly. "Whether you have the best insurance, the best HR department backing you up, the best previous contacts with doctors, a neighbor as an insider, it's broken for everybody. The key is not to make the broken system part of your own brokenness."
Daly first encountered the center shortly after his melanoma diagnosis. A marathoner, triathlete, and now six-time Ironman, Daly was in peak physical condition and never had a symptom: "I thought I had super health." Then he had his doctor check out a tiny spot on his left bicep. He got the stage 3 melanoma phone call on Sept. 10, 2002. It was his 49th birthday.
The cancer soon spread throughout Daly's body and into his brain; he endured several powerful drug treatments and radiation. His care ranged from excellent to "not-so-great," but the center empowered him to engage his medical strategy, including taking part in a National Institutes of Health trial he credits with helping save his life.
"When I first met Meg [Gaines] she said, 'Pete, you've got to fight like your life depends on it,'" recalls Daly. "Until she said those words to me, I really didn't believe it. I was ready to say I'm sick, I've had bad luck, and now I'll take the luck of the system to see if I survive. That's a big fallacy that holds a lot of people back."
Though Daly had only minor issues with his insurance coverage, the three Center for Patient Partnerships students keeping track of his paperwork were "a real gift" that allowed him to focus on getting well.
Currently, despite a few setbacks, Daly seems to be cancer-free. He now fights on behalf of other seriously ill patients, including those who lack health insurance because they're out of work. In 2007, there were 463,740 uninsured people in Wisconsin.
"The whole tie between health insurance and employment is a broken construct," says Daly. "If you're diagnosed with a serious illness, your job is threatened, and therefore your health is threatened. I don't think people understand how they can be literally medically bankrupt in months. The downward spiral can happen to almost anybody tomorrow."
An imperfect safety net
When Erik Ness' wife, Cindy Coffin, lost her job - and, with it, her benefits - at an environmental organization due to budget cuts, the couple went on COBRA. This federal program lets people who lose their jobs continue to be covered on their group health plans for a limited period of time.
Cindy made plans to start her own business, and Erik, a freelance journalist, began shopping for insurance to cover the family of four, including their two young children.
Then Cindy turned 40 and went in for her first-ever routine mammogram, where a lump was found. On a bright spring day in 2004, Cindy was diagnosed with breast cancer.
"We knew the COBRA wouldn't last, but we thought we were covered," says Ness. "But COBRA is an imperfect safety net."
Because Cindy now had a preexisting condition, securing insurance coverage without working for a large pool employer would be next to impossible. And so the couple turned to the center for help.
Under Gaines' guidance, Cindy switched hospitals and moved to the UW Comprehensive Cancer Center, where doctors performed a biopsy of the lymph nodes using multiple cross-sections rather than a single slice down the middle, which the other hospital had planned to do. They found several tiny irregularities hidden throughout Cindy's lymph nodes.
"I think it netted Cindy a couple of years," says Ness. "Right from the beginning, we felt really good about the advice Meg had given us. Meg's viewpoint is it always comes down to a choice: Do you want to go with the standard recommended treatment for this disease, or do you want to fight for something different? And will you be satisfied a year from now with the choice you made?"
For the next several years, the center continued to guide the couple. Advocates came to several key doctor appointments, and, when Cindy's COBRA expired halfway through her chemotherapy, it helped them to find alternate insurance - at a premium price.
"Our medical expenses were a minimum of $1,500 a month," says Ness, "for four years."
Ness is an award-winning journalist who covered a cancer beat for many years, and he's the son of two physicians. He has a friend at a major cancer research institution, and he had the Center for Patient Partnerships.
"Short of me or Cindy actually being a cancer researcher in this area of expertise, we were about as informed as you can be medically," says Ness. "And it was still exhausting and overwhelming. If it was this hard for us, how do other people do it without all that help?"
Center staff helped the family choose a new oncologist at Meriter, where Cindy had to go for the latest cancer drug. ("Some weird health care politics that nobody could ever really explain to me," says Ness.) And they helped Cindy transition to HospiceCare for the last two and a half weeks of her life. Cindy Coffin died on Feb. 4, 2008. She was 43.
"Although there are ways for individuals to be intelligent health care consumers, the system is so clearly broken that the fixes have to be on a systemic level," says Ness. "The problem is that people like us, who have really witnessed the many ways in which the system is broken, are rarely able to wage that battle at the time because everything else in our lives is broken, too."
Meg Gaines agrees there is a need for major health care reform, and is uniquely qualified to suggest fixes.
"Our system is designed to generate profit," she says. "It's not designed to generate health. That's the big, huge elephant in the living room in health care reform - the unfathomable, utterly unethical profiteering in health care."
Still, Gaines believes the most powerful thing Americans can do is be unwavering advocates for their own health. Don't sit back and hope the system will work.
"We're responsible for it, too," says Gaines. "We want doctors to be gods because we're scared when we get sick. We want somebody like daddy or mommy who's gonna make it all better, so we can abdicate responsibility to them.
"But part of your role as a parent, when your kid looks at you and says, 'I can't do this,' is to say, 'Oh, but you can.'"
The Center for Patient Partnerships offers free services to people with life-threatening or serious chronic illness.
Individuals with such illnesses can call the center to schedule a phone appointment, with either the sick person or his designee. Staff will determine whether or not the center can help.
Those whose situation requires a long-term plan are paired with at least one student advocate. The average advocacy relationship lasts three to five months; the student advocate will likely change at the end of a semester. Cases are not closed until they are resolved.
The center does not litigate, provide legal or medical advice, or offer financial assistance. Rather, it partners with patients to provide education, resources and support.
Center staff help patients deal with emotions including fear, anger, denial, confusion and grief. They can explain a given diagnosis and help coordinate treatment, including potential clinical trials. They can help navigate insurance policies and assist with claim issues. And they can assist with employment rights and end-of-life planning.
The Center for Patient Partnerships
975 Bascom Hall, Suite 4311