The Center for Patient Partnerships

Client Stories

These case stories illustrate experiences clients have when seeking assistance with the Center, a patient advocacy educational organization. We advocate for clients with life-threatening or serious chronic illnesses, with approximately 80% having received a cancer diagnosis.

Center advocates helped Aaron research treatment option and secure disability benefits from his employer. Advocates provided Parker's family hope and guidance at a stressful time. Lucîa found support identifying her own priorities while she made a difficult medical decision. Doris focused on her treatment and recovery while advocates negotiated with her insurance company for coverage.

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Lucîa

Supporting Patients' Values During Difficult Medical Decisions

In July 2004, Lucîa, a 56-year-old California woman, was completing chemotherapy for ovarian cancer. Although Lucîa was in remission and believed she was receiving excellent health care, she contacted the Center because she wanted more information about her options. She had been told to "watch and wait," a standard recommendation for patients with her diagnosis, but Lucîa was not comfortable with this passive approach.

Center staff and students researched various treatments with initially promising results. Sifting through the research together, they considered treatment risks and benefits, assessing how a treatment regimen would affect Lucîa's life and her family. Center advocates also offered reassurance and support while Lucîa narrowed her options to a few she would more carefully evaluate.

Lucîa also had the chance to connect with director Meg Gaines, an ovarian cancer survivor herself who had taken one of the drugs Lucîa was considering. Ultimately, Lucîa decided to take this drug, which she believed gave her the best chance for long-term survival with the least disruption to her life.

Although the Center does not give medical advice, the staff is able to help patients sort through available data in order to weigh treatment options and help them make decisions with their doctors. This can be an overwhelming and confusing task, and represents a valuable advocacy opportunity.

Parker

Providing Hope and Guidance in Times of Crisis

One evening in November 2002, Center Director Meg Gaines received a call from Kevin S., father of 2-year-old Parker. Parker had been diagnosed with a brain tumor, and his parents were faced with some tough decisions, as there was no standard of care for this rare cancer. Parker's oncologist recommended chemotherapy and stem-cell recovery therapy. Despite the treating physician's orders, the insurer denied payment for this therapy because it was "experimental." Parker's parents did not know what to do in the face of the insurer's refusal to pay.

After hearing Kevin's confusion about how to proceed, Meg 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 to allow Parker's treatment to begin without pre-payment. In exchange, the Center pledged to leave no stone unturned in securing coverage for the services.

While the insurance company did not pay for Parker's treatment, the Center helped his family arrange coverage through a Medicaid waiver program for children with special health care needs. More than three years later, Parker is in remission and enjoys an active life as a 6-year-old.

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 and won in September 2006 - the insurance company must reimburse Medicaid for the cost of their son's treatment. Parker's mother, Amy explains, "those funds are for families who don't have insurance, and we have insurance."

Aaron

Researching Treatment Options and Securing Disability Benefits

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. 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 maintain a positive outlook and remain hopeful. Cohn, the married father of two teenagers, said having children made his illness even 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 needed 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."

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"

Doris

Fighting for Insurance Coverage So Patients Can Focus on Getting Well

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 radiooncologist at the comprehensive cancer center. The surgeon said he and the radiooncologist 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 radiooncologist 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."

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