“When I was diagnosed with ovarian cancer at the age of 39, all I could think about was wanting to see my kids grow up. I was also overwhelmed with the amount of information out there; it seemed like for everything I read on the internet, there was conflicting information somewhere else. I needed help. My husband, Matt, contacted the Center for Patient Partnerships and spoke with Meg Gaines, who it turned out was also diagnosed with ovarian cancer as a young mother, and is a long term survivor. The immediate sense of hope and relief I felt after talking with her and the other advocates at CPP was instrumental in getting me through the months of chemo and surgeries. They had my back during the most difficult time in my life.
“One of the things about getting sick is the amount of expenses that stack up. Even with good insurance, there are co-pays for numerous appointments and medicines, alternative therapies like massage and nutrition counseling; these things add up. Upon receiving my diagnosis, one of the things I had to do was cancel months of freelance work I had lined up, because there was really no telling if I would be able perform my job (and as it happens, that was a good call). Some patient advocates charge upwards of $100 an hour; there is no way our family could have swung that, especially with the absence of my income. The fact that CPP renders its advocacy services at no cost to the patient is truly an amazing gift and asset to our community.
“I have been cancer-free for three years now, and look forward to seeing my older daughter, Siv, graduate from high-school in just over a year. My younger daughter, Lula, is about a foot taller now than she was when I was diagnosed. Every day is a gift and I’m living my dream of seeing my daughters grow up. I also know that if the need arises, the Center for Patient Partnerships will always have my back. For this I am grateful.”
One evening in November 2002, Center Director Meg Gaines received a call from the father of 2-year-old Parker. Parker had been diagnosed with a brain tumor, and his parents were faced with some tough decisions. Parker was being treated at a teaching hospital. Parker’s oncologist recommended chemotherapy and stem-cell recovery therapy. Despite the treating physician’s solid recommendations, however, the insurer denied payment for this therapy because it was “experimental” and not the current “standard of care.” Parker’s parents did not know what to do in the face of the insurer’s refusal to pay.
After hearing the father’s panic and confusion about how to proceed, center advocates asked him a critical question: “If the worst happens and Parker dies from this disease, what decision today would allow you to say you did everything you could?” Without hesitating, he said, “I would do the chemo and bone marrow transplant.” Parker’s parents were willing to do whatever was necessary to get him the treatment he needed. They mortgaged their home and borrowed to their maximum. Still, they could not begin to cover Parker’s treatment costs.
A student advocate negotiated with a hospital administrator so the hospital would allow Parker to begin treatment without prepayment.
The insurance company never agreed to pay for Parker’s treatment. However, the Center for Patient Partnerships helped his family arrange coverage through a Medicaid waiver program for children with special health care needs. Years later, Parker is in remission and enjoys an active life.
The Center does not file lawsuits or litigate. Seeking no reimbursement for themselves, however, Parker’s parents retained counsel and filed suit against the insurer, asking that the company reimburse Medicaid for the cost of their son’s treatment. Parker’s mother explains, “Those funds are for families who don’t have insurance, and we have insurance.”
Photo Credit: Jeff Miller, UW-Madison University Communications.
In 2002, Pete Daly was diagnosed with Stage III melanoma and told he had a 50 percent chance of survival. Like many patients, Pete’s cancer diagnosis changed his life. He became a self-advocate, building his own health care team and working to secure the best health care he could find.
As an early client of the center, student advocates were assigned to work with Pete. They helped him with his early questions: What is this disease? What are possible treatments? How do provider charges compare against insurance payments, and what does that mean for me? Who is a good therapist for my family and me? How will I assemble my team?
Transformed by his experience, Pete soon began to take his lessons to others as a volunteer advocate and supervisor at the center. The mysteries of melanoma, the most serious form of skin cancer, have not escaped him. Facing the unknown, Pete’s daily lessons carry over to his work, informing his relationships with patients and his supervision of student advocates.
Pete believes the Center reaches students at the right time, just before they begin their careers. He knows from experience the often immeasurable help that future professionals can provide patients who face life-threatening conditions. According to Pete: “the Center implants an unforgettable, patient-centered experience that students will carry with them as they embark on their professional journeys.”
The oncologist who told Doris Evert she was not a candidate for pancreatic cancer surgery never referred to his patient by name. Not once, Evert recalls of her doctor’s impersonal manner. Worse, he refused to give Evert a referral for a second opinion at a nearby comprehensive cancer center.
“There was no compassion at all,” Evert says. “He gave no hope at all.”
Evert, 65, was diagnosed with pancreatic cancer in February 2002, a little over a month after she visited an urgent care center complaining of a sinus infection. A doctor there ordered an ultrasound after learning she was experiencing nagging pain under her right shoulder blade. A few days later she got a call from the clinic telling her the x-ray was fine.
Three weeks later, however, her internist called and asked her to come in right away for a biopsy. She got the news, while on a trip to Belize, that one of the three biopsies taken of her stomach was positive.
As a Realtor, Evert is self-insured. She chose a health maintenance organization to take advantage of group rates offered through her professional trade organization. But it soon became her albatross.
Her internist recommended a medical surgeon within the HMO. This surgeon recommended that Evert undergo the “whipple” procedure, in which the head of the pancreas and a portion of the bile ducts, the gallbladder and duodenum are removed. A portion of the stomach is also sometimes removed.
Evert began doing her own research and learned that a nearby comprehensive cancer center offered more advanced technology in radiation therapy, something she would likely be undergoing after surgery. She tried to get a referral to the hospital, but was turned down.
The operation through her HMO was unsuccessful. After the procedure, Evert asked the surgeon if her condition was terminal. “He said ‘yes,” Evert recalls. “Then he said he had to go to his son’s baseball game.”
Evert tried again at this point to get a referral and was, once again, turned down.
Her internist instead recommended an oncologist within the HMO who put her through a regimen of chemotherapy and radiation. Evert remained as active as she could during these treatments – continuing to work and even driving herself to and from the clinic.
It was about this point that Evert contacted Meg Gaines at the Center for Patient Partnerships.
Evert was assigned to a student patient advocate, Anthea. “She immediately started fighting for me,” says Evert of Anthea.
“When you go through the process you feel hopeless,” Evert adds. “You are already drained, emotionally and physically. You don’t know the steps you need to go through to get the referral. She knew the people and went ahead and did it. She talked to people in the right places.”
Evert says she was in touch with her patient advocate almost daily while undergoing chemo and radiation. She kept feeding Anthea information as her HMO continued to deny repeated requests for a referral.
When Evert finished her treatments, she met with her oncologist to learn the results and her prognosis. Her sister and niece accompanied her.
He told them the tumor had indeed shrunk, but that surgery was not an option.
“He said ‘go home and enjoy your August. The tumor will be back.’”
Evert says the oncologist reacted angrily when she asked for the films from her MRIs and CAT scans so that she could seek a second opinion on her own.
At this point center advocates advised her to seek out all her options and worry about who was going to pay later.
Gaines knew Evert needed the specialized care of a cancer surgeon, not simply a medical oncologist – her only option through her HMO. “It’s not appropriate,” Gaines says. “A medical oncologist doesn’t do surgery.”
Evert made an appointment with a cancer surgeon and a radio-oncologist at the comprehensive cancer center. The surgeon said he and the radio-oncologist would review her records and get back to her in a week or two.
When Evert retells that conversation, she has tears in her eyes. “He called and said ‘I think you should go for it.’ It was just wonderful news.”
He recommended surgery as soon as possible. Her HMO once again turned down a request to cover the surgery. Two days before the surgery Evert’s appeal of that denial was still pending.
A day before the surgery, Evert began fasting, still unsure if she was going to owe tens, if not hundreds, of thousands of dollars after the procedure. (Evert had had to show financial ability to pay, though was not required to pay up front.)
Gaines recalls Evert called that center that day in tears.
Gaines and the student advocate got back on the phone and called an administrator at Evert’s HMO. “We said this becomes actionable at some point. We need an answer and we need it now.”
The administrator called back in 15 minutes and said the surgery would be covered.
Evert got the news at 5 p.m.
The surgery took 17 hours and the surgeon said her gallbladder was so diseased it should have been taken out during the first surgery. During the surgery, she lost part of her stomach, her entire right colon and the diseased part of her pancreas.
As a result of the diseased gallbladder, Evert developed an abscess that had to be drained with a tube.
Her surgeon apologetically informed her that, because of the placement of her tumor, he couldn’t get to all the cancerous tissue. The radio-oncologist suggested a regimen of radiation that could be administered through the same tube that was draining Evert’s abscess. Evert spent a month in the hospital and had to continue to wear the tube to drain the abscess for about six months after the surgery.
Yet, nearly four years later, the cancer has not returned. Evert returned to work and continues to lead an active life which includes travel, golf, tennis, church and family and friends.
Evert, herself, did not deal with HMO gatekeepers while attempting to get referrals and coverage. She fed information on her contacts with medical staff to her patient advocate who took it from there.
“Anthea made the appropriate calls… She saved me from financial ruin.”
A skeptic by nature, Aaron Cohn nevertheless took life’s ups and downs in stride. But getting diagnosed with stomach cancer on August 2, 2005 was different, he says.
“I had been used to feeling self-confident,” Cohn says. “If the constellations and stars stayed in the right place, I never had a problem I couldn’t deal with. But this was not something I could do myself. I knew it right away. This was different, I was scared and I had no past to relate to. I had to find new skills and I knew I couldn’t do it on my own. Then Pete came along.”
Pete Daly, a patient advocate at the Center for Patient Partnerships and a cancer survivor himself, approached Cohn after learning of Cohn’s diagnosis. Daly knew Cohn because their daughters were friends.
At their first meeting, Daly and Cohn talked about ways Cohn could remain hopeful. Cohn, the married father of two teenagers, said having children made his illness all the more devastating.
“Kids are vulnerable,” he explains. “It would be a lot easier with no children,” says Cohn, before adding, “It would also be a lot harder.” Daly likened dealing with cancer to entering a jungle, especially as it relates to family dynamics.
“When you enter the jungle of a cancer diagnosis you enter as a whole family,” Daly says.
“But the perception and fears are going to be different.” Cohn said Daly and student patient advocate Andrew helped him find the specialist he needs at the local comprehensive cancer center.
“You have to get the right doctor,” Cohn says. “You have to feel confident the right person is taking care of you. That’s monumental.”
Soon after being diagnosed, when Cohn came out of surgery, which was not successful, a doctor told him he had 60 days to live.
While that turned out not to be true, it was a learning moment for Cohn.
“Pete and Andrew got me not to talk about statistics — I didn’t do a good job at that – and just not listen to people.”
Advocates from the center helped Cohn research anti-nausea antidotes for treating side effects from chemotherapy and cut through the red tape so that Cohn could retire early at a higher level of pay due to his disability.
“It didn’t take long for clarity to evolve,” he says. “I wouldn’t be where I am without Pete and the Center.”
Cohn, himself a teacher, offered advice to students new to patient advocacy, “Don’t be to quick to feel good about it. Let the process be the reward and allow time to really listen to a patient. You can be instrumental when you approach it from a more serious place.” For patients he added, “It’s too easy going on trying to be one’s old self and it’s hard to reinvent. Patients need a lot of support.”
Aaron Cohn died of stomach cancer in October 2007.
Interview from June 6, 2006.