Fifteen years ago, in a 10-by-10-foot room in Newport News, Nancy Davenport-Ennis went to work to help breast cancer patients get a fair shake from their insurance companies. She was motivated by the death of her friend Cheryl Grimmel, whose insurance denied her coverage for a bone marrow transplant. Grimmel died in December 1994 at age 34, but Davenport-Ennis, a former Realtor and schoolteacher, never gave up the fight.
Last week, her Patient Advocate Foundation supported the cancer community in lobbying the Virginia General Assembly to have insurance companies cover oral chemotherapy drugs at the same rate as intravenous drugs.
Over the years, its work, together with its sister organization, the National Patient Advocate Foundation, has helped bolster patient rights at the federal level and changed laws concerning health insurance coverage in multiple states.
The organization now occupies 37,000 square feet of office space in Hampton. "It's like starting in a closet and moving to a mansion," says founding board member and former Del. Mary T. Christian, who sponsored the 1994 legislation that requires insurance companies in Virginia to cover bone marrow transplants (see sidebar).
PAF now has seven satellite offices and employs more than 210 people. Last year, its case managers helped more than 82,900 people with 278 different chronic conditions to access health care, cope with medical debt, and deal with related issues.
The past two years PAF has received the top, 4-star rating from Charity Navigator, an organization that rates nonprofits on their fiscal management, transparency and service. Out of 5,500 charities examined, 238 received 4 stars. It was also honored recently by the personal finance news website, MainStreet, as the No. 2 charity in the nation for its performance, behind Give Kids the World. Between 91 and 92 percent of PAF's funds goes to program services, with less than 8 percent spent on administration.
What PAF does
While the national organization, based inWashington, D.C., works to steer policy, the local Patient Advocate Foundation assists individual patients. The nonprofit's mission is "to provide effective mediation and arbitration services to patients to remove obstacles to health care, including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses."
All its services, as well as literature and educational materials, are free. Local patients it has helped include Susan Jones, a 49-year-old Medicare recipient whose diagnosis with interstitial cystitis led her into the Part D "donut hole," or gap in prescription coverage. (Medicare is available to people age 65 and older and younger people with disabilities.) She received help from several programs, including the Co-Pay Relief fund established by the foundation in 2004. "It saved my life. You have no idea. I've paid a lot of money on medication. Reimbursement is a really big deal for someone with low income. They're the best, a true blessing," says Jones.
Likewise, PAF resolved an eviction threat faced by Newport News resident Christine B. Griffin after her Medicaid assistance application had been partially denied. Her son, Mike Brewer, wrote a letter praising her case manager, Gayle Petrick. "I can't imagine my mother's guardian angel having any more sincere concern for her well-being. There is absolutely nothing she or I could do to repay this debt."
Each case averages between 12 and 13 contacts by case managers with physicians, insurance companies, social workers, and so forth. Urgent cases are taken up immediately; others can expect to be contacted within three business days. "We know the system is broken for those with chronic diseases. …We're solving problems that no one else can," says Davenport-Ennis, who relies on a network of doctors and lawyers for expert advice.
The vast bulk of the work is conducted over the phone, though its Austin, Texas, office, partnering with Lance Armstrong's LIVESTRONG organization, offers a walk-in service with bilingual case workers.
Millions tapped in to the foundation's help last year through its distribution of more than 300 publications (31 developed by the Patient Advocate Foundation), 12 websites — one in Spanish — and emails. "Our job is to find as many resources as we can," says Davenport-Ennis. "We're the knot at the end of the rope."
The foundation has grown at a steady 20 to 30 percent annually, both in revenue taken in and services rendered. In its first year, 1996, it raised a little more than $100,000 and helped 157 patients; in fiscal year 2010/11 it took in $42 million in revenue and assisted 82,963 patients in person. (The annual fundraising gala, scheduled for Saturday, alone brought in more than $250,000 in 2011.) Cancer, and specifically breast cancer, continues to account for most of the patients served, but an increasing number are seniors who can't afford Medicare co-payments. In 2004, PAF established a Senior Services Division to accommodate this demographic.
Little by little, PAF has expanded its services. A $250,000 grant from the state kick-started the Virginia Cares Uninsured Program in 2007. From 2004 to 2010, its Co-Pay Relief program provided more than $34 million in direct financial support.
The organization receives the vast bulk of its funds from grants and partnerships, such as the Obici Healthcare Foundation, theSusan G. Komen Foundation, and several other cancer organizations, hospitals and government funds.
The most recent advance, a trademarked one-stop online Prescription Access Point, was developed by Carey Waldrip, a former Busch employee. (When Davenport-Ennis learned of Busch's sale, she immediately snagged a dozen of its employees.) When it debuts next quarter, the program will streamline applications for free drugs from a variety of manufacturers, reducing the usual multi-tiered maze for consumers to a straightforward 10-minute process.
Since 1999 PAF has organized an annual three-day Patient Congress in Washington, D.C., for updates on the latest health-care developments; it also sponsors several educational scholarships. Last year it added 43 jobs and opened two new offices, one in San Antonio, and one in Dare County, N.C.
In 2011 the national foundation formed the Regulatory Education and Action for Patients (REAP) Council to comment on half a dozen topics in reaction to the Affordable Care Act.
It's about family, too
Davenport-Ennis' two daughters have executive roles, Beth Patterson as president of mission delivery, and Fran Castellow as president of operations. "We operate like a business, not family," says Davenport-Ennis. "Ask anyone here and 99 percent will say they belong where they are. They do a good job."
In a 1999 Daily Press story, Davenport-Ennis said, "I can't do this work if I personalize it. I have to approach it from a business perspective, or I won't be able to stand it." Honorary PAF board member Mary Christian has found that Nancy's compassion and empathy equal her business abilities. "She's a great person. She's very passionate."
A breast cancer survivor herself, Davenport-Ennis started with a personal stake through her friendship with Grimmel, one that was repeated six years ago when her husband, John "Jack" Ennis, the foundation's chief development officer, was diagnosed with neck and head cancer. They brought the foundation's resources to bear in order to get him the anti-nausea drugs he needed that were not covered by his insurance. Not everyone in the clinical trial at Duke Medical Center was so fortunate.
What needs to change
"A Greater Understanding," a PAF primer for providers, states: "The cost of treatment should not be the limiting factor in determining a patient's care. However, it does need to be a consideration. … Both the patient and provider need to address the issue of treatment costs prior to beginning a course of therapy."
Davenport-Ennis believes that education would go some way to resolving the problems patients encounter. "It's regrettable that people aren't more educated. When you educate people about their choices, they make good ones," she says. She believes that high-schoolers could benefit from learning about health insurance. "That's where it has to start."
Underinsurance is a major problem, she says. It's the fastest growing segment. People don't know it until they get sick. "People find themselves in a desperate situation because they don't get the information up front. People need to look thoughtfully at their genetic history and the health history of their families to determine what support they're likely to need in the future," she says. She urges people to stop looking at the cost of premiums and instead what the formularies are, and at a policy's internal caps on doctor visits and treatments.
Even if federal health care reform survives intact, people "will still need intelligent guidance and professional mediation to exact the full measure of benefits available to them," says Davenport-Ennis. "Now the big job is to see the regulations are written correctly."
The foundation's data — it shows that by age 30 a majority have preexisting conditions — was used to shape the Affordable Care Act's provision that children cannot be denied insurance on that basis. The group is a major source of data on national health trends, according to PAF board president Dennis Gastineau, chair of hematology at the Mayo Clinic in Minnesota.
The database, which was started on day one of the foundation's work, has gathered information from all 50 states showing the patterns and challenges of access to health care. "(The database) has allowed (PAF) to have an effect on national policy with a patient-centered, middle-of-the-road approach. It has strongly advocated for portability and the need for patients to be approved without pre-existing clauses, a major source of difficulty for those with cancer," he says.
He also credits Davenport-Ennis for her "grasp of facts and people," and being "the personality of the foundation" in driving its accomplishments. "It wouldn't have happened without that unique combination. Through her energy, breadth of knowledge and ability to connect with individuals, she has been able to carry out the mission … She has a passion for the cause. Now it has momentum where it will graduate to the next level."
For her part, Davenport-Ennis would like to see a system of care and reimbursement that incentivizes healthy lifestyles and accurate reporting, and discourages the overutilization of tests. There should be affordable insurance at affordable costs, she says, and the individual consumer should understand their responsibility for making good choices.
11th annual fundraiser
"A Promise of Hope Affair Black & White Ball … A Night at the Jazz Club," 11th annual fundraiser at Newport News Marriott at City Center, 740 Town Center Drive, Newport News, at 6 p.m. Feb. 25; http://www.promiseofhope.net. Includes dinner, live and silent auctions, and dancing to the sounds of Slapwater. Tickets are $200, $150 for each additional. For information, call 1-800-532-5274.
Patient Advocate Foundation
The mission of the Patient Advocate Foundation, a 501-c3 nonprofit, is to provide effective mediation and arbitration services to patients to remove obstacles to healthcare including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.
PAF case managers serve as active liaisons between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters as they relate to their diagnosis also assisted by doctors and health-care attorneys. All services and educational materials are free.
Headquarters: 421 Butler Farm Road, Hampton; offices in Queens, N.Y; Molville, Iowa; Orlando, Fla.; San Diego; San Antonio; Dare County, N.C., and the LIVESTRONG Cancer Navigation Center in Austin, Texas.Copyright © 2015, Los Angeles Times