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Cancer struggles inspire patient crusader

  • Story Highlights
  • Patient Advocate Foundation born of personal cancer struggles
  • Organization offers free help in navigating health care system
  • Founder: 44,515 clients received help in 2007
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By Caleb Hellerman
CNN
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NEWPORT NEWS, Virginia (CNN) -- Long before she took on America's embattled health-care system, Nancy Davenport-Ennis was riding high. She was a national speaker for the homebuilding and real estate industry, teaching classes at the University of North Carolina and writing a textbook about selling new homes. Her husband, Jack, ran a successful funeral parlor and they had two daughters in good private schools. Then, Davenport-Ennis got breast cancer.

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"My diagnosis was probably the best thing that ever happened in my life," says Nancy Davenport-Ennis.

"My diagnosis was probably the best thing that ever happened in my life," Davenport-Ennis said. "Until that diagnosis, I was so focused on my own family, my own community and my own career, that I really was not sensitized to what happens to you if you're diagnosed with a life-threatening illness."

But this isn't a self-help story. It's about a woman who got angry and decided to change the world.

Two years after her own diagnosis, a close friend of Davenport-Ennis was found to have advanced breast cancer. "She was told there were no options for treatment," said Davenport-Ennis. Cheryl Grimmel was 31 years old. "She had a 12-year-old son, and she essentially was making legal arrangements for what was going to happen next.

"I just felt there was a travesty, that a 31-year-old woman needed to have a second opinion, that a 31-year-old woman needed to have options."

Davenport-Ennis took charge of Grimmel's case -- calling hospitals, calling Grimmel's insurance company, calling her own doctors at Duke University Hospital and getting her into a clinical trial for an experimental drug.

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But there was a problem. Just days before Grimmel was scheduled to start chemotherapy, the insurance company said it wouldn't pay. Grimmel's parents scrambled to raise a $50,000 deposit -- mortgaging their house -- and over the next year, the Ennises helped the family raise more than $200,000 to continue treatment.

By then, Davenport-Ennis was free of her own cancer, and she threw herself into the project with the same energy that had once helped push homes up around the country.

She talked her way into the office of the state insurance commissioner and told him about Grimmel's struggle. When no assistance was forthcoming, Davenport-Ennis rounded up political professionals and took her case to the Virginia Legislature.

Less than a year later, there was a law requiring every health insurance company in Virginia to offer breast cancer patients a costly type of bone marrow transplant.

To her chagrin, Davenport-Ennis found she couldn't really savor the victory. It wasn't enough. So her coalition pushed, successfully, for similar laws in other states.

Patient Advocate Foundation

The Patient Advocate Foundation offers mediation related to health-care access, maintenance of employment and preservation of financial stability.

Contact the organization at 1-800-532-5274

  • www.patientadvocate.org
  • Treatment at Duke helped Grimmel live an additional 3 years. "Cheryl became a person that we loved and that we took care of day in and day out," said Davenport-Ennis. When she died, the funeral was on New Year's Eve. On the way home, Davenport-Ennis turned to her husband and said she knew what had to be done.

    "When I met Cheryl, and I lived her journey with her, I had long discussions with my God, who leads a lot of decisions in my life, and I argued with him for a long time," she said. "I said, 'I am not the person to open this organization, but if you show me who the person is, I'll go and help.' "

    But Davenport-Ennis wasn't one to wait for divine assistance. A few months later, she found herself sitting alone in a blank, 10-by-10-foot room, in a Newport News, Virginia, office building, wondering just what she had gotten herself into. It was the Patient Advocate Foundation, and before long, it was helping hundreds of patients in plights like Grimmel's.

    A few years later, with a small staff struggling, Davenport-Ennis begged daughters Beth and Fran to pitch in. It was a tough sell, she said, "when you have two adult daughters with magnificent careers, and you say, 'We know you have outstanding credentials, but we can't afford to pay for them. Will you take a one-year leave of absence to come and help?' " She laughs. "It was a difficult conversation."

    But this is a woman not used to hearing "no," not even from her own daughters. Both are still with the foundation. Her husband had helped co-found PAF. With his daughters on board, he signed up as chief development officer.

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    Today the one-room office is gone, replaced by a neat, two-story building, and six more offices around the country. The foundation has 106 employees and 162 volunteer attorneys.

    The organization fielded 6.6 million requests for help last year, according to Davenport-Ennis, and took on 44,515 people as clients -- all with life-threatening or chronic and debilitating conditions. Some need a pit bull to take on an insurance company. Others have no insurance, while others have coverage but need financial assistance to buy medicine. None pay for the help. According to Davenport-Ennis, PAF is able to "successfully resolve" more than 98 percent of the cases it takes on.

    Jack Ennis also knows what it's like to be on the wrong end of a tough diagnosis. Two years ago, he saw his doctor for an earache, only to learn that he had stage 4 oral-pharyngeal cancer. The doctor gave him a 30 percent chance of living 100 more days. But after seven weeks of therapy at Duke, a new round of tests found him cancer free.

    "Here's a doctor who's been a surgeon for 30 years, and he's crying," said Ennis, tearing up himself as he recalls the moment he heard the good news. "He looked at me and said, 'All doctors feel like they're entitled to a miracle. And you're my miracle.' "

    It was a lot to handle, even for a family that's used to dealing with crises. But Davenport-Ennis said she's driven by a sense of mission, and the memory of her friend. "We learned from Cheryl's illness that when you have a life-threatening illness, you need someone to go to bat for you today. Not tomorrow, but today. And that they're going to be there for you, until the problem is solved." E-mail to a friend E-mail to a friend

    Caleb Hellerman is a senior producer with CNN Medical News.

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