Shirley Manly Lampkin, PhD, RN, has seen the toll breast cancer has taken on African American women. That’s why in 1989 the Oakland, Calif., resident decided to leave her job as a hospital nurse to start a new career as a breast cancer nurse educator and health advocate, promoting awareness of treatment options and the importance of early detection to women of color in the San Francisco Bay Area. “My aunt had breast cancer and my cousin died of the disease in her early 30s,” Lampkin says. “Black women in their 20s and 30s who get breast cancer are far more likely to be diagnosed at a later stage and have a more aggressive form of the disease. Often these women discover a lump in their breast and are told by their doctors not to worry because [the doctors mistakenly believe] they are far too young to have breast cancer.”
Since 1990, the average annual breast cancer mortality rate for younger black women in the United States has been 15.4 deaths per 100,000 population, versus 9.3 per 100,000 for younger white women. And according to a 2007 report by the Susan G. Komen Foundation, African American women overall have a 35% higher breast cancer death rate than Caucasian women, even though black women have lower incidence rates of the disease.
A major reason for these disparities, says Lampkin, is that “low-income and minority women are less likely to be offered the latest [screening] tests or treatments. Minorities also make up less than 10% of participants in cancer clinical trials, which is another area we need to work on.”
For nearly 20 years, Lampkin has strived to help African American women overcome many of the cultural, social, educational and financial barriers that prevent them from getting regular screenings and receiving life-saving treatment. One of her biggest challenges is addressing traditional cultural beliefs and misperceptions about cancer that are common in the African American community.
“I encounter many African American patients who think that cancer is a punishment from God or who believe that if they undergo surgery for breast cancer, the cancer will spread when it’s exposed to the air,” she explains. “People who hear these myths often delay screening and are diagnosed with larger tumors when they finally do see a doctor.”
Lampkin’s one-woman crusade against breast cancer disparities kicked into particularly high gear during the eight years she spent working for the Northern California Cancer Center (NCCC), an independent research organization dedicated to cancer prevention and improving the quality of life for people living with the disease. There she designed outreach programs to educate African American women about mammograms, breast self-exams, breast cancer risk factors, treatment options and available resources. Her community outreach projects included spreading the word at local beauty shops and churches and encouraging women to be proactive about their health.
She soon realized that there was a tremendous need for information and support services for breast cancer patients in the local black community. “I met many young African American women who had been diagnosed with breast cancer and needed help navigating the health care system,” Lampkin says. “They wanted information on treatment options and were seeking support groups and other resources.”
As a result, she decided to open Imani’s Breast Care, an Oakland store that specializes in services for breast cancer patients, including a wig and hat boutique for women who have lost their hair because of chemotherapy, and fitting services for prosthetic breast forms and post-mastectomy bras. She also offers support groups and seminars through her store as well as one-on-one counseling. In addition to serving women throughout the San Francisco Bay Area, Lampkin has shipped prostheses and breast forms to Guatemala, Jamaica and Zimbabwe.
“So many women in developing countries, especially those in rural areas, have no access to health care or to items such as a mastectomy prosthesis,” she explains.
In her own community, some of Lampkin’s other outreach efforts include hosting an annual “Healing Day in the Park,” an event for breast cancer survivors and their families held in Pittsburg, California. The event is now celebrating its ninth year.
“At our last event, we had more than 1,000 breast cancer patients and their families,” Lampkin says. “The day is filled with healthy food demonstrations, music, laughter and recognition awards to doctors who have gone above and beyond to help their patients. It’s a day for women to forget about cancer treatments and to celebrate with their friends and family.”
And that’s still not all. Four years ago, she helped create NCCC’s African American Breast Cancer Conference, held each May in Oakland. The free conference is designed to provide black women with culturally appropriate information and resources that will empower them to make informed decisions about their health, and to disseminate this information to other women in their communities.
In 2005, Lampkin (who earned her bachelor’s and master’s degrees in nursing during the 1980s) went back to school to get her PhD. A year ago, she accepted her current position as director of community health programs for the California Pacific Medical Center (CPMC), a community-based not-for-profit hospital in San Francisco. While this highly visible position has given her new and greater opportunities to improve women’s health outcomes through community outreach, she has also continued her personal breast cancer advocacy efforts, logging many hours serving as a volunteer for the American Cancer Society and the NCCC.
“My current job is a nurse’s dream,” Lampkin says. “In addition to my work in the community, I serve on the hospital’s diversity committee. Our hospital’s leadership, including our CEO Dr. Martin Brotman, our vice president of service excellence and organizational development, Wanda Roane, and our vice president of nursing, Diana Karner, are longtime champions of diversity. They have allowed me to use my creativity to engage our employee base to participate in a variety of community outreach events, and to design outreach programs to reach diverse and vulnerable populations.”
One such project Lampkin has launched is Nurses That Care, a program in which nursing staff can earn continuing education credits by working at community health events. “This also helps our nurses improve their communication skills and to become comfortable working with diverse patient populations,” she adds.
CPMC nurses also volunteer at events organized by Project Homeless Connect (PHC), a coalition that is part of San Francisco mayor Gavin Newsom’s 10-year plan to end homelessness in the city. This past February, in conjunction with a PHC event, Lampkin and CPMC introduced a pilot program that provides homeless women with free mammograms and full health care assessments.
“These women have already endured so much,” she says. “That’s why we want to help them in whatever way we can, by offering them a complete health assessment, in a way that makes them feel cared for and respected.”
This project is one of the ways in which CPMC provides health care outreach to the uninsured. Statistics from the Susan G. Komen Foundation show that women who are uninsured have a 30% to 50% higher risk of dying from breast cancer than women who do have health coverage.
Until a cure is found for breast cancer, Shirley Lampkin plans to continue advocating for better awareness, prevention, early detection and access to treatment for women in minority and underserved communities.
“Despite all the gains that have been made in the area of breast cancer research, African American women still suffer disproportionately from the effects of the disease,” she says. “Breast cancer is the second leading cause of cancer death among African American women, and we still don’t know what causes the disease. We still have a lot of work to do.”
Lampkin emphasizes that being diagnosed with breast cancer can be one of the most confusing and frightening experiences in a woman’s life. She believes it’s imperative for health care professionals to do whatever they can to make the treatment process easier for patients.
“If a woman doesn’t feel comfortable coming in to Imani’s, I’ll go to her home and fit her for a breast form,” she says. “If she can’t afford one, I often pay for it with my own money. I’ve probably given away far more than I’ve sold.”