NBCCF gets personal with health access campaign

by Leah Thayer

Of the approximately 260,000 American women diagnosed with breast cancer last year, there was "Jane Doe.' The 44-year-old single woman, a paralegal in a small Louisiana law firm, learned she had invasive ductal breast cancer in October. Doe's employer had often questioned her need for insurance, her medical condition and her doctor's appointments, and it promptly fired her upon learning of her diagnosis — never mind that the firm itself represented plaintiffs with asbestos related cancer. Doe couldn't afford $406 for monthly insurance continuation on the $788 she received in unemployment compensation. She was ineligible for Medicaid, Medicare or any other insurance programs. Nor could she sue her former employer, whose small size exempted it from federal laws against discrimination, harassment, wrongful termination and insurance cancellation.

Doe now faces total mastectomy, reconstruction and possible lymph node extraction, with no means of payment. "While I have been applying and interviewing for jobs, needless to say, no one wants to hire a cancer patient," says Doe "[E]ven if they did, the minute their insurance covers me, I ... am subject to their pre-existing clause. "

Stories like Doe's are behind one health advocacy group's unusual twist on grassroots lobbying. With "Stop Breast Cancer: Personal Stories. Public Action." the National Breast Cancer Coalition Fund (NBCCF) aims to use true, often heartbreaking stories drawn from all over the country to demonstrate the human implications of a flawed health care system. In so doing, NBCCF hopes to educate and mobilize consumers and policymakers around its top priority: guaranteed access to quality health care for all.

NBCCF is a Washington-based coalition of more than 600 organizations and 70,000 individual members dedicated to ending breast cancer through action and advocacy. Last year, a survey of congressional staff members named NBCCF's separate lobbying arm, the National Breast Cancer Coalition, one of the 2O most influential groups in health policy.

A picture of health care access

As its name suggests, the "Personal Stories" campaign centers around the experiences of real women (and men) who have struggled to access quality health care while dealing with serious illnesses such as breast cancer. Introduced in May, the campaign "is still in its early stages," stresses Chrystal Morris, NBCC's senior manager of field operations. The goal in this phase is to collect at least 500 brief "snapshots of people's experiences by summer s end-- e.g., the quality of their health coverage, the choices they had, the respect and assistance they received (or didn't receive) from employers and providers. As of late August, about 200 such stories had rolled in, including that of the pseudonymous Jane Doe and some submitted "on behalf of people who've passed away," says Morris.

Lobbying campaigns often use personal stories to illustrate their case for legislative action, sometimes bringing in "victims" to testify at hearings or speak at press conferences. But NBCCF's campaign is groundbreaking in both its ambitious scope and its ultimate goal.

The scope of "Personal Stories is national; NBCCF wants to "paint a picture of health care access in the United States," according to the campaign overview. To that end, the organization is tapping its enormous grassroots network to generate broad word-of-mouth interest, and providing a number of ways to submit personal narratives. These include downloadable story forms from the NBCCF website and free "house party kits' that help individuals collect stories from friends, family members and others in their community. Morris notes that the term "house party" is used loosely — basically, the concept applies to "any venue where people feel comfortable telling their stories," including support groups, breast care centers or hosted parties in private homes. The kits come with postcards, magnets, forms and prepaid envelopes for mailing them to NBCCF, and tips for making the party successful.

Equally unusual is the campaign's ultimate goal: to support NBCCF's number-one priority of guaranteed access to quality health care for all. As stories like Doe's underscore, lack of such access under the current system is a huge barrier to healthy survival for women with breast cancer and other serious illnesses. NBCCF hopes to show policymakers in a very concrete way why health care access is more than the faceless abstraction of actuarial statistics. "We're making it personal," says Morris. "Legislators can see exactly what's happened to people — the same people that voted them into office."

To learn more about NBCCF's "Personal Stories" campaign, call 800.622.2838 or visit www.stopbreastcancer.org.

Leah Thayer is editor of The Women's Health Activist.