The feeling after diagnosis, Virginia Bierman said, is the hardest part.
“I broke down and cried hysterically in the taxi because I knew it would be the last time that I would allow myself to cry about it,” she said, recalling the day she was diagnosed with kidney cancer. “People with cancer don’t talk about it very much, probably because their loved ones are afraid if they utter the word ‘cancer,’ everyone might fall apart.”
Hoping to help others, Bierman eventually joined a community education effort that runs a novel cancer detection program from public libraries in Queens, New York. The program, called HealthLink, claims to be the first cancer screening effort that uses libraries to reach poor and uninsured people who don’t have the regular checkups that might detect the disease earlier.
HealthLink and its associated Cancer Action Councils are run by a consortium of not-for-profits supported by American Cancer Society, Memorial Sloan-Kettering Cancer Center and local cancer centers and public libraries. The effort, launched in 2007 with $2.9 million in federal funds, claimed to have reached more than 1,000 people through programs and screenings by March 2008. A related initiative, a “mammovan” that travels to libraries around Queens offering free mammograms, had screened 123 people and detected four cancer cases by then, according to a HealthLink coordinator, Tamara Michel.
The libraries are the perfect place to attract local residents, Michel said.
“The libraries are very widely used, so they’re ideal locations,” she said. “In some of the locations we got a lot of people just passing by, who then made appointments for the next visit.”
More than a quarter of the residents of this immigrant-heavy part of New York City speak little or no English, and almost the same percentage have no health insurance, program participants say. And the cancer rates are alarmingly high: late-stage breast cancer diagnosis in Queens is three times the national average—and colorectal and prostate cancer is nearly double.
Bierman, a health coordinator at the Astoria Blue Feather Head Start pre-school, works every day to promote healthy living. Via the councils she can interact with other community members to discuss how to fight cancer in the community.
Similar anti-cancer community outreach programs are cropping up elsewhere. The Witness Project, begun in Arkansas and now operating nationally, has survivors share their stories to help break down the fear and silence that many women associate with cancer.
In Alabama, prison officials oversee The Butterfly Project: a program that educates incarcerated women in the two state prisons about the importance of early detection. The project received national media attention and was incorporated into a video that is now screened in women’s correctional facilities across the country.
“The Cancer Action Councils are vital,” says Michel. “Every community and neighborhood has unique needs and, therefore, requires very different strategies if we are going to increase access to health care.”
“Every family that is touched by cancer has different needs,” said Eartha Washington, vice president of the breast cancer support service Shareing and Careing, a member of the Cancer Action Council and a 14-year survivor of breast cancer. “Whatever those needs are, we’ll meet them.”
Washington advocates a buddy system, under which women with cancer are accompanied to hospital appointments by a fellow survivor and outreach worker. Shareing and Careing also offers a counseling service. “We receive calls, and do whatever else is necessary,” she says.
Washington also works with the Witness Project of Harlem, a breast and cervical cancer education program based on the Arkansas movement focusing on black women.
“It’s a fact that overwhelmingly more white women get breast cancer, but overwhelmingly more black women die from it,” she said. “It’s the same cancer. It’s just discovered later.”
If the HealthLink screenings find any trouble, uninsured women don’t have to pay for treatment—the Queens Cancer Center will provide it for free. “We work with hospital partners to coordinate mobile unit visits, and follow-up treatment where necessary,” said America Cancer Society spokesman Keith Hudson.
Council members hope this program will be a model for community-based anti-cancer efforts nationally.
“It would be wonderful to see similar programs in other states,” says Jennifer Erb-Downward, project coordinator at Memorial Sloane-Kettering. “This type of partnership has a great deal of potential to improve health outcomes for people who are presently not accessing the care that they need.”
“I see our group really coming together to bring cancer awareness to a new level in this neighborhood,” Bierman said. “I believe we as a group can save lives by giving knowledge and resources for treatment to the community.”
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