Two Komen advocates talk about their work on the local and global scenes
Current economic times have hit everyone hard, but as is often the case, the ones hit hardest are those with the most need—like women in California between the ages of 40 and 49 who might have breast cancer. In January, the state’s “Cancer Detection Programs: Every Woman Counts” will suspend the program and change the eligibility age. This program offers free mammograms, breast exams, pelvic exams, and pap tests to the state’s underserved.
And while the state made the announcement on December 2 that the change was purely an economic decision, coincidentally it came only weeks after new recommendations that said women should not begin breast cancer screening until age 50.
Chris Tannous, PhD, the president and public policy chair of the Orange County Affiliate of Susan G. Komen for the Cure, says the group immediately began lobbying the state to reconsider the changes while looking for ways to help these women. Tannous is also a survivor, having been diagnosed with stage 2b breast cancer in 1988 at age 33. She underwent a lumpectomy and radiation. In 2004, Tannous had DCIS in the same breast and underwent a mastectomy.
However, she didn’t get involved in breast cancer advocacy until a decade after her initial diagnosis.
“I created a peer counseling program on a college campus, and we were planning a cancer day,” Tannous says. “They asked me to talk about cancer. I told them I didn’t know anything about cancer; I had done it and put it behind me.”
They continued to press her, she says, so she decided to become educated about cancer, which led to her becoming active in the American Cancer Society Speakers Bureau and lobbying on Capitol Hill. She became a consumer reviewer for Department of Defense grants and then a reviewer for Komen grants. In 2006, she was invited to join the board of the Orange County Komen affiliate as grants chair, and this year assumed the presidency while also handling public policy for the group.
The Orange County affiliate is the fifth largest revenue generator of the 122 U.S. affiliates with a budget of $6 million annually, Tannous says. “We keep 75 percent of the funds we raise for local distribution to nonprofits that support our mission; we gave $990,000 to the national office for research last year.”
The current focus for Orange County is the underserved, she says, with a focus on young African American women, the Asian Pacific Islander community, Latinos and young women.
“We did a needs assessment in these communities to determine the gaps,” Tannous says. “We went to the University of California, Irvine, and funded epidemiologists to gather hard data in these communities to find gaps in access to care.”
This study helped the affiliate determine the best existing nonprofits to fund in order to meet the identified needs. “For example we fund Latino Health Access, which goes door-to-door to do outreach in the Latino community because of fears of immigration.”
In addition, Tannous serves as the survivor advocate on Komen’s Scientific Advisory Board. Chaired by Eric Winer, MD, the board includes clinical and research specialists in breast cancer who evaluate scientific requests. She also is the national delegate to the Global Initiative, member of the steering committee for the Komen Advocates in Science Program, and consumer reviewer of research grants for the Department of Defense’s Congressionally Directed Medical Research Program in breast cancer.
“We meet four times a year,” Tannous says. “As an advocate I can often ask for changes in proposals that will affect survivors.”
For Dorothy Paterson the Komen connection began when she and her family took part in a Susan G. Komen Race for the Cure toward the end of her treatment for stage 3 breast cancer in 1998. Paterson, who was treated at the University of Texas M.D. Anderson Cancer Center in her hometown of Houston, says she couldn’t believe what a wonderful experience it was.
“We were blown away by the spirit of survival, and I still had one more [round of] chemo but it was like a big party to celebrate the end of a very difficult year.”
Paterson had a mammogram less than a year before her diagnosis.Then to be diagnosed with stage 3b and two positive nodes was embarrassing, she recalls. “Even the doctor said I had done everything right.”
To help deal with her frustration, Paterson began running as her “vitamin X,” taking part in the Houston Komen Race for the Cure in Houston with her daughter in 1999.
“When I hit the finish line and the announcer said, ‘and here is another survivor, Dorothy Paterson,’ I felt like I had gotten an Olympic gold medal for my 11-minute mile.”
Paterson says that race was a turning point. She explained to her husband that if she only had a few years to live she wanted to do something to make a difference. Within a few months she had ended her 21-year career as a geologist to become a full-time breast cancer volunteer.
She joined the Houston affiliate of Komen in 2000 as the director of the pledge program, a job she would hold for six years during which she grew major donations from $175,000 a year to $2.5 million. The national office of Komen then asked her to begin working with other affiliates on how to grow their major pledges.
Soon, Paterson was asked to help with the Komen Global Initiative, and she served on the planning committee for the first global advocacy meeting in Budapest, Hungary, in 2007.
This year, she assisted with training local advocates who created races in Puerto Rico, Tanzania, and Egypt, where 10,000 people walked around the pyramids, which were lit pink for the event.
“There were women wearing burkas who took their pink t-shirt and pinned it to their shoulders like a shawl,” Paterson says.
In Houston, Paterson and her friend Jeannie Frazier, also a survivor, began a Pink Ribbon Volunteer program at the M.D. Anderson breast clinic with the goal of being present for the women and their families who come from all over the world to the hospital.
Frazier says she and Paterson have become well-known flashers at the center, willing to show women that reconstructed breasts can be a nice replica of the real thing.
“They are so thankful,” Frazier says. “When they walk in carrying their films, we know they are very new to this process, so we just introduce ourselves as survivors and they are so glad to see us.”
This article is a part of CURE’s 2009 San Antonio Breast Cancer Symposium coverage. To read more articles from SABCS 2009, visit sabcs2009.curetoday.com.