It was a breakout session at the 2019 Young Survival Coalition Summit that inspired YSC State Leaders Jasmine Souers and Marissa Thomas to create a community for women of color affected by breast cancer.
Sitting in a room full of frustrated women discussing diversity and inclusion in clinical trials, the two co-founders let out several exasperated sighs.
Black women, and in some states Latinx women, are 40% more likely to die from breast cancer than their white counterparts. Despite that fact, together they make up only 6% of clinical trials for breast cancer treatments.
The two women thought it would be a solution-oriented discussion. But it quickly turned into the blame game.
Breast Cancer and Racial Disparities
At best, some blamed the researchers. Addressing the crowd, one researcher said, “Black women don’t participate in clinical trials.” A woman in the crowd retorted, “So, what are you doing differently to recruit women from minority communities?”
At worst, some blamed the women themselves.
“I don’t want to say someone’s not doing their job, but someone needs to tell them to go to the doctor because black women always come in at later stages. And it’s frustrating for me because I want everyone to have a good outcome,“ said a woman from across the room.
“Black women, and in some states Latinx women, are 40% more likely to die from breast cancer than their white counterparts. Despite that fact, together they make up only 6% of clinical trials for breast cancer treatments.”
“Frustrating for YOU,” said Jasmine as she turned to look at Marissa, confused and irritated.
Suddenly, the room was in an uproar. But as they looked around, they noticed they weren’t the only ones feeling misplaced and misunderstood. The Asian and Latinx women shared their sentiments.
It’s about more than being underrepresented in clinical trials and research. There was an overwhelming sense of women of color feeling overlooked in the breast cancer community as a whole.
With so many new and trendy breast cancer groups popping up for young women, why did it seem women of color were hardly ever included? Why was it so hard to find photos of women of color who’ve opted for specific breast surgeries? Why was it so tough for women of color to find wigs that mirrored their natural hair texture? Why didn’t the notes about the side effects of radiation include how darker skin responded to treatment? And the list went on…
A Meeting of Like Minds
Jasmine was diagnosed at 26, Marissa at 35. They met like plenty of young adults affected by breast cancer – on Instagram. They instantly clicked when they met in person at the YSC Summit. And they bonded after sharing their experiences of exclusion and facing obstacles navigating treatment.
They discussed ideas of creating something new for women of color, not just black women. But what started as a conversation, quickly became a plan to create For the Breast of Us, a website dedicated to sharing stories of women of color affected by breast cancer – stories that connect, inspire and educate other women.
The two talked daily and worked closely for months, though they live far apart. Jasmine is in Jacksonville, Florida and Marissa lives in Seattle, Washington. In addition to creating something to elevate the collective voice of marginalized women in the breast cancer community, they pulled research about the barriers to quality treatment for women of color and designed much of their site around alleviating those.
A place where women of color could learn about clinical trials, how they work and where to find them. A place where women of color could find a dictionary of common cancer terminology. And most importantly, a place where women of color were connected through the shared experience of encountering barriers. These barriers include cultural backgrounds, poor communication, perceived discrimination, and medical mistrust. So, they could use their experience to educate other women of color.
A Place for the Breast of Us
The response to For the Breast of Us has been overwhelmingly positive. And the site reached more than 4,500 people in its first month online. From navigating active treatment to managing the “new normal,” women of all colors have shared stories of strength, provided personal advice, and given authentic accounts of their current challenges. Allies for the blossoming breast cancer community for women of color have also come forth. They include podcasters, nonprofit organizations, and respected healthcare professionals.
Jasmine Souers is a 28-year old breast cancer survivor from Jacksonville, FL and co-founder of For the Breast of Us. Today, Jasmine is in pursuit of a purpose-driven life. She is a passionate advocate for young women and women of color affected by breast cancer. And she believes in the power of sharing the voices of women from marginalized communities to break barriers in the cancer community.