Hampton health advocacy group ranked second in nation


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."

Phenomenal growth

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.