Sisters Network is the only national black breast cancer survivors organization
Even after 20-plus years, founder Karen Jackson says there is more work to be done
October is National Breast Cancer Awareness Month. As women across the world reflect on personal stories, survival testimonies and memories of loved ones, survivorship organization Sisters Network is focused on the importance of sisterhood during the battle of facing and conquering breast cancer.
Cancer survivor Karen E. Jackson was in search of support, empowerment and hope when she was living in Los Angeles in 1994. She’d recently learned she had stage 2 breast cancer in her right breast.
“I went through my six months of chemotherapy, and the six weeks of radiation and the surgery [lumpectomy],” she said.
During that fight for her life, all she wanted to do was pick up her phone between her visits to UCLA Jonsson Comprehensive Cancer Center for treatment. She longed to speak with other women who were battling the same disease, women who could relate to the stress surrounding the battle — black women. There were none. So she founded Sisters Network.
“When I found out that there was no number to call to talk to women that looked like me, and who were going through the same experience in an organization that I could want to be a part of, I felt the need to do this,” she said.
With no money and very little resources, Jackson went on a mission to create a network for black women across the United States fighting the same battle. According to the Sisters Network’s website, “Jackson’s primary motivation was to break through the silence and shame of breast cancer that immobilizes African-American women, restricts their ability to receive support services, interferes with early detection and ultimately affects their survival rates.”
She accomplished her mission and now the organization is the only national African-American breast cancer survivorship organization in the United States, with a membership of more than 3,000 and 40 affiliate survivor-run chapters.
“When you find someone who has the background similar to yours and experiences, you don’t have any racial problems between the two of you,” Jackson said. “We deal with racial problems every day in our lives, that give us stress, and the disparities just keep piling up. When you come together in a cultural situation where everybody is just starting off in the same playing field, not economically, not on the educational basis, but because we come from the same cloth, it helps to keep your focus on getting better, rather than issues that challenge us every day, other issues.”
Jackson had a desire to break barriers in the breast cancer industry that often alienated women of color in the conversation due to the lack of diversity and resources within traditional organizations. She opened up shop in her home, using her landline as the business phone number.
“I never answered my home phone, ‘Hello, this is Karen.’ It would be, ‘You’ve reached the national office of Sisters Network.’ It was my home phone. I didn’t have to have any money extra to use a phone. The phone numbers that Sisters has now is the phone number that was my personal phone. I never changed Sisters; when I moved, I changed my phone to a personal phone.”
Sisters Network provides resources that are critically important to black women. In 2011, the organization’s efforts impacted the lives of about 3.9 million families through its outreach programs.
“Women were finding us after being diagnosed and much later in their stages. I really feel very blessed that now women are calling us earlier,” Jackson said. “We can help them reach their full potential of survivorship because we have resources and connections across the country.
“Women need to know that once diagnosed that it’s time to find that new normal where we are embracing who we are at that time. At Sisters Network, we help women to become more comfortable, as you would say, in their skin.”
Jackson said she had to learn about launching Sisters Network and navigating the breast cancer landscape while she was just dealing with her own situation.
“There was no blueprint for a Sisters Network, so I pretty much had to figure out what it was that I was looking for, and I started with that premise.” Jackson said. “What I needed and couldn’t find is what I wanted to be able to assist other women with. I envisioned a national organization.”
A recent study conducted by the Avon Foundation for Women found that the breast cancer mortality rate for black women is much higher than for white women. From 2010 to 2015, black women were 43 percent more likely to die from breast cancer and accounted for 30.7 deaths per 100,000 women.
While these numbers are alarming, Sisters Network is continually serving black women with the education and resources they need. Under Jackson’s leadership and vision, the organization hosts the only National African American Breast Cancer Conference. It has launched other outreach programs, including Stop the Silence National African American Breast Cancer 5K Walk/Run, Teens4Pink, Gift for Life Block Walk, Pink Ribbon Awareness and the First Ladies Brunch.
In the 22 years of Jackson’s efforts, she said she thought by now that the level of resources and awareness education would be more accessible to black women.
“I thought things would have been completely turned around and all women would have the knowledge that they need to save their lives and all women would be able to access the information, access the treatments and the facilities.” Jackson said. “To my dismay, I guess I was too optimistic. As much as we’ve impacted our community, there’s still so much more to do. We know that the treatments, access and knowledge still need to be imparted through the women across the country.”
Through Sisters Network, Jackson is reminded that sisterhood is important.
“I would meet women who really and truly needed to hear from someone who looked like them. That’s what I wanted, and that’s what I looked for,” she said. “It matters, the sisterhood is real.”
Jackson was diagnosed with cancer again in 2014, this time in her left breast.
“I was diagnosed with stage 0 the second time around,” she said. “I knew what I was looking for. I knew it was there even before the ultrasound and mammogram. I could feel it. Not with my hands; the sensation was there. I can accredit that because of my knowledge and intuition and sensitivity of knowing my body. I had the surgery and radiation because it was stage 0. I didn’t need to have chemotherapy.”
Jackson feels that women must put their health as their top priority and they need to be able to gain the knowledge they need to recognize the warning signs.
“Your health is all you have, and everything else comes after that,” she said.
Sisters Network continues to evolve. Jackson was so inspired by the Black Lives Matter movement that she is launching a new initiative called Breast Health Matters.
“We are in tune with the movement within our community because things that happen to us in health do happen to us in other areas and vice versa. We’re not a separate segment within the community,” she said. “Health is those disparities and challenges that need to be removed and not accepted. Breast Health Matters initiative will help to point these disparities out in a different way, so that we can start working on eliminating them.”