As a young girl, Nancy Davenport-Ennis remembers hearing her parents tell stories about families struggling to pay their health-care expenses following a diagnosis of a serious illness like cancer. But it wasn’t until 3 decades later when she was coping with her own diagnosis of breast cancer and the breast cancer diagnosis of a friend that she really understood the devastating financial consequences a cancer diagnosis imposes on patients and their families. It was that realization that compelled Mrs. Davenport-Ennis to launch the Patient Advocate Foundation and the National Patient Advocate Foundation in 1996.
Born in Niagara Falls, New York, in 1944, Mrs. Davenport-Ennis’ first vocation was teaching English at Bethel High School in Hampton, Virginia. In December of 1989, after finding a lump in her right breast and receiving a diagnosis of cancer, Mrs. Davenport-Ennis underwent a mastectomy. Six months later, she had a second mastectomy when cancer was detected in her left breast. Despite her two bouts with cancer, Mrs. Davenport-Ennis’ oncologist assured her that her prognosis was good. Married and raising two teenage daughters, Beth, then 18, and Fran, then 14, and teaching full-time, the news came as a relief.
When a close friend of hers, Cheryl Grimmel, 31, was diagnosed with stage IV breast cancer soon after Mrs. Davenport-Ennis’ second mastectomy and was told to put her affairs in order, she had 6 months to live, it set a chain of events in motion that would put Mrs. Davenport-Ennis on a new career path as patient advocate.
“We helped Cheryl get into a clinical trial and she lived for 3½ years. But, despite the fact that Cheryl had health insurance, the insurer refused to pay the costs associated with the trial, including a bone marrow transplant, putting her at financial risk,” said Mrs. Davenport-Ennis. “Cheryl’s number-one concern in the remaining days of her life was that she not leave her family in medical debt. It was such a tragedy to see a young woman having to face her own death while worrying about paying her medical bills.”
To help other cancer patients caught in the financial—and emotional—dilemma of having health insurance but denied coverage of medical costs incurred by clinical trials, Mrs. Davenport-Ennis volunteered with the Virginia Task Force for Insurance Reform and fought for passage of Virginia House Bill 240, which mandated that insurers offer and make available coverage for the treatment of breast cancer with high-dose chemotherapy and autologous bone marrow or stem cell transplantation. The bill passed in 1994, just months before Ms. Grimmel’s death.
Two days after the bill was signed into law, the health commissioner of Virginia announced that the state would make the provisions in the bill a standard feature of health insurance plans at no additional cost to consumers. Mrs. Davenport-Ennis then elicited sponsors and organized task forces in several other states to enact similar bills to provide coverage for high-dose chemotherapy and bone marrow transplant for patients with breast cancer or non-Hodgkin lymphoma. Her efforts were successful in seven states: Tennessee, Missouri, Florida, New York, New Hampshire, New Jersey, and California.
Turning a Tragedy Into a Challenge
The night of Ms. Grimmel’s funeral, Mrs. Davenport-Ennis and her husband, Jack Ennis, began putting plans in place that would ensure on a national level that patients with serious diseases would have an ally in securing health insurance and in resolving insurance, employment discrimination, or financial issues related to their illness. Those plans would become the basis for Mrs. Davenport-Ennis’ two-pronged approach to providing aid for people with cancer and other life-threatening diseases: the Patient Advocate Foundation, a national nonprofit organization that provides legal and financial assistance and help navigating insurance appeals, resolving medical debt, and maintaining employment; and the National Patient Advocate Foundation, which lobbies for improvements in access to health care through regulatory and legislative reform at the state and federal level.
“When we got home from Cheryl’s funeral, I said to Jack, ‘This is supposed to be me.’ I still get emotional thinking about it because it was a time in my life when I had one daughter in college and another graduating from high school, and I was focused on their well-being. But I knew if I did not get involved in helping drive health-care policy reform nothing would change for so many Americans faced with catastrophic illness,” said Mrs. Davenport-Ennis.
Mrs. Davenport-Ennis spent the next 2 years becoming educated about health-care issues and consulting with nonprofit organizations on how to build the foundations’ infrastructure and network of case workers, attorneys specializing in health care, oncology nurse case managers, oncologists, social workers, and former insurance industry case managers she would need to operate the foundations. On September 4, 1996, she launched the Patient Advocate Foundation and the National Patient Advocate Foundation.
A Legacy of Success
Over its 17-year history, the Patient Advocate Foundation has assisted more than 650,000 patients, and provided educational programs and information on resolving health insurance, workplace discrimination due to illness, and financial issues to millions more through its website. In 2009, the National Patient Advocate Foundation supplied data on the huge increase in patients with preexisting medical conditions being refused care by health insurers to sponsors of the Patient Protection and Affordable Care Act. That information was used to form the central provision of the law: a ban on lifetime benefit limits and preexisting condition exclusions.
Although Mrs. Davenport-Ennis expects full implementation of the Affordable Care Act to be challenging, she is confident it will provide access to millions of Americans without health insurance.
“As a new federal program there will be bumps in the road to full implementation, and we will have to be prepared to lend a hand to newly diagnosed cancer patients who may need supplemental financial or other help,” said Mrs. Davenport-Ennis. “But at least we can begin the process of keeping our population healthier for a longer period of their lives because they will now have basic health services available to them.”
A Family Affair
In July, Mrs. Davenport-Ennis stepped down at Chief Executive Officer of the Patient Advocate Foundation and the National Patient Advocate Foundation, but remains Chairman of their Board of Directors. She credits the success of the foundations to the generosity of their Board of Directors and scientific committee members as well as the volunteer oncologists, nurses, case managers, social workers, attorneys, insurance agents, and members of the pharmaceutical industry that make the work of Patient Advocate Foundation and National Patient Advocate Foundation possible.
She is also grateful to the contributions her daughters, Beth Patterson, President, Mission Delivery for Patient Advocate Foundation and Fran Castellow, MSEd, President, Operations for Patient Advocate Foundation, have made to the foundations’ record of achievements.
“The girls saw what happened to Cheryl and how Jack and I helped her get into the clinical trial and resolve some of her medical debt, so there has always been a feeling in our family to want to make life better for patients and their families,” said Mrs. Davenport-Ennis. “For me, personally, there has been no greater honor than to work with our wonderful volunteers and my family to help patients get the medical care they need without having to worry about going bankrupt in the process. I don’t want other patients with cancer to have to worry like Cheryl did about how they will pay for their care when their main focus should be on getting well.” ■