Sisters Network Inc: Creating Community Among Black Women With Breast Cancer for Over 3 Decades

When Karen Eubanks Jackson was diagnosed with breast cancer, she decided to create what she was missing: a nationwide sisterhood of support for black women.

Breast Cancer in the Black Community

Karen Eubanks Jackson created Sisters Network Inc, the only national breast cancer organization dedicated to Black and African American women.
Breast Cancer in the Black Community

Anyone who's ever experienced a serious diagnosis will tell you that, regardless of what it is, talking to someone who has been there helps. But when Karen Eubanks Jackson was diagnosed with stage 2 breast cancer in 1993, she couldn't find anyone within the Black community to talk to.

In response, she created Sisters Network Inc, a nationwide organization dedicated to supporting Black women with breast cancer and educating the public about the crisis of breast cancer in the Black community.

Recently, Everyday Health sat down with Jackson and her daughter, Caleen Allen, who has joined her in running the organization, to talk about the journey of Sisters Network Inc, and what’s next for them.

Everyday Health: We love a good origin story. Ms. Jackson, would you take us back and tell us the story of your diagnosis?

Karen Jackson:?It was 1993. I was living in Los Angeles, and living a healthy lifestyle, exercising, trying to eat right. I was about 48. I knew I had a family history, so I was getting my mammograms. The mammograms said nothing was wrong. But I was still thinking, there's something wrong with my breast. I could feel it, intuitively. Not with my hands. So I asked the doctor what else we could do. He recommended an ultrasound. And lo and behold, it was cancer.

EH: You’ve talked about that experience changing you. Can you explain?

KJ: It made me a proactive person. The doctor said it had been growing a few years. It was growing slowly. But it was stage 2, when it should have been found at a precancerous stage. I had insurance, I was proactive, but I was still falling through the cracks.

EH: How old were you when you were diagnosed, and how long had you been getting mammograms?

KJ: I was about 48 and had been getting screened since I was 35 because of my family history.

EH: How did the idea for Sisters Network Inc come about?

KJ: I sought out support, because I needed it. And I can say that I received education from different places. But I didn't find the sisterhood that I was looking for, that camaraderie, somebody interested in talking to you or hearing from you on the phone about what's going on. It wasn’t the sisterhood I was looking for. And so I started thinking that I didn't want to just survive breast cancer, I wanted to do something that could change that experience, and change how Black women were being treated and thought of. So I created it in Sisters Network Inc.

EH: How were Black women being treated and thought of?

KJ: At that time, the medical community was talking about Black women in terms of what we didn't do. Like we’d done something wrong. And at the time, triple-negative breast cancer, which is diagnosed at a younger age and more often in Black women, had no name. They just said that we didn't come in early enough. So all of that was blamed on the patient. You’re stage 3 or 4, it's your fault. In the Black community, fear is a negative issue and keeps us from getting information and moving forward. And there was stigma to being diagnosed when I started Sisters Network Inc, and still is.

EH: Was it daunting, starting a national organization?

KJ:?I come from a family of creative, community-minded people, so I didn't feel as though I couldn't do it. Though I was told by everyone “You can't do that,” because we didn't have funding and we didn't have access to resources or anything at that time. But determination and persistence and your passion can get you through a lot of hurdles.

EH: How did you decide where to focus?

KJ: We didn't have a blueprint, so it had to be something that really was definitely my vision as to what was missing for women. And that was sisterhood, and access to education, because education was not directed at African Americans at that time.

EH: So what is your philosophy of Sisters Network Inc, too?

KJ: In our organization, we talk about life, not death, because when you think about death, it immobilizes you. Also, when I was newly diagnosed with stage 2, I wasn't necessarily thinking about dying, but that was what they talked to me about. I thought about living and living well and living happy and active. Sisters Network Inc is an organization where we are living well, living happy, and we have women like myself who are long-term survivors.

EH: You’re very proud of the fact that you are a national organization, aren’t you?

KJ: Yes. In the very beginning, we would meet at my home. But I wouldn't let anyone tell anyone or themselves “We're meeting at Karen's house.” No, we said we were meeting at our office for the organization. It was a mindset of saying who we are before we were. Thirty years later, we're still the only national organization for African American Women and breast cancer, and we have affiliate chapters in 26 cities.

EH: Caleen, you work actively with your mom and Sisters Network Inc now. What’s your role?

Caleen Allen: I've always kind of been in the shadow of Sisters Network Inc since day one, always helping, but not officially working day to day with the organization. For the last three years, I've come on board to help the organization in a full time capacity, lending my marketing communication and strategic partnership skills to the organization. It’s been really wonderful.

EH: What do you see as the new challenges Sisters Network Inc needs to take on?

CA: I'm blessed to have such a courageous mother and to watch and see what she has built over the last nearly three decades. The sad part is there's still so much more work to do. And women are being diagnosed at a younger age. You know, it's dropping lower and lower. I'm in my mid-fifties. And so it's important to me, of course, to do my mammogram and my ultrasound every year. But I feel it’s also important to really try to engage, in a very targeted way, with that sector who's under 40, because they are in the fire line for breast cancer.

EH: You don’t believe in instilling fear, and you say the Black community has had enough of that imposed on them. So how do you ride that fine line between educating and making people aware and not scaring them?

CA: We have to make it real to them. We don't want to spook them. We don't want to invoke fear, but we want to empower them with the information and education so that they are aware of their bodies, their personal health, and genetic testing. And with the example of women who have walked the journey and are living very full and robust lives, despite the fact that they have been diagnosed with breast cancer.

EH: Beyond community building, Sisters Network Inc has also gotten involved in policy — like advocating for screening before age 40 for Black American women, and ultrasounds. Can you tell us a little bit about that?

CA: Yes. We really want to advocate for the guidelines to be revisited, particularly lowering the age to 35, particularly for Black women. We feel that having a 3D mammogram and an ultrasound, as a check and balance, is very important regardless of family history, just because we know that no test is failsafe. And we've seen enough women who've fallen through the cracks that it's a no-brainer.

EH: You’ve also been outspoken, as an organization, in declaring a breast cancer crisis in the Black American community. Can you tell us more about that?

CA: Black women are 2.2 times more likely to be diagnosed with triple-negative breast cancer, the most aggressive breast cancer. We're 42 percent more likely to die of breast cancer. Our five-year survival rate is 10 percent lower than any other ethnic group. In any other area, when you have those staggering numbers, you would consider that a crisis. It’s time for the advocacy groups, the medical associations and pharma to come together, acknowledge it, and make a big change, so that we can say all women's lives from breast cancer.