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LGBTQ+ People Deserve Inclusive Breast Health Resources

Proto and Creager in center flanked by their wives

It's time to end erasure of queer women and trans men from breast/chest health discussions.

We are lesbians and collaborators in the LGBTQ+ movement. We also have a third thing in common: We are both survivors of breast cancer. Each of our health journeys have led us to unite around a common goal to ensure that LGBTQ+ communities have what they need when facing a breast cancer diagnosis or getting treatment to prevent it.

In Dina's case, she spent years undergoing countless procedures to mitigate her high breast cancer risks. She endured invasive surgeries that required grit, determination, resilience, and continual love and nurturing from her wife, Dom, their children, and their respective families. It went on for more than a decade.

Along the way, Dina also sought out support groups to help her cope with the emotions that arose around the bodily changes that resulted from her intense treatments. There, she faced a rude awakening. All of those groups were filled with straight women who did not react well when she spoke of her wife and her overall experience as a lesbian facing major breast health issues. In one online group, all but one of the women dropped off the call, after she shared insights from her LGBTQ+ perspective.

In another conversation, when Dina shared her sorrow over the loss she was feeling after a double mastectomy, the person she confided in quipped: "Well at least there's still one set of boobs in your relationship," referencing Dina's wife, Dom, who has not faced any breast health problems herself. These incidents of insensitivity and misguided reactions left Dina feeling lonely, isolated, depressed, and unsupported.

Yet even as she rode the wave of these feelings, she felt a sense of resolve, knowing she had the skills, the contacts, and the wherewithal to make a change. As a registered nurse, author, DEI (diversity, equity, and inclusion) expert, and CEO of her own health care consulting firm, she set out to give LGBTQ+ people a new resource. She enlisted Cindi's advice as a breast cancer survivor, LGBTQ+ public relations pro, and friend.

Cindi overcame the immense challenge of major breast cancer treatment in 2018 and 2019, penning this op-ed for The Advocate at the time about the disparities facing LGBTQ+ people with cancer. She shared important statistics in the piece from the National LGBT Cancer Network and looked to the future about how to use her experience as a catalyst for giving back. The piece also highlighted how lucky she was to have good insurance, health care providers who respected her identity, and an amazing support system (including, most importantly, her wife, Rainie) to move through the difficulties. Far too many LGBTQ+ people with cancer lack these privileges.

Today, we, Dina and Cindi, are both healthy and thriving. So, during Breast Cancer Awareness Month, we are thrilled to announce that we have formed a new nonprofit to fill the resource gap for those in our communities who are confronted with breast health challenges. It's called the Inclusive Community for Breast Health or as we affectionately call it, "I See Breast Health," a play on our acronym. ICBH will provide education and resources for LGBTQ+ individuals who are in treatment for, or seeking to prevent, breast cancer, and work to build cultural competence within the health care system through collaboration with academic and health organizations.

As Dina saw firsthand during her own nursing education, there is a dearth of information on LGBTQ+ populations for those being trained as nurses, doctors, and other health care roles. ICBH plans to formally partner with academic institutions and engage with current medical students and future health care providers so they have the tools they need to provide excellent breast-focused healthcare for LGBTQ+ people. Some of these collaborations have informally begun.

And although we are only just beginning our work, we're excited to share a non-research based survey focused on identifying LGBTQ+ community support needs in the area of breast/chest health. The responses we receive will help us understand what people are facing so we can better focus our programming priorities to meet those needs. We're also organizing our first online educational panel that will include a variety of LGBTQ+ individuals with varying experiences and perspectives on breast health. That event is planned for November and we will share specific details on our social media pages in the near future.

We are grateful to take these first steps in launching what we believe will be a vital source of information for LGBTQ+ individuals with breast health concerns. We aim to create a safe space for those in our communities who are in the midst of these circumstances and looking for help. We want to give them the freedom to be fully authentic as they seek guidance and community support. We're excited to lay the groundwork and start executing our programming in earnest over the next year, and we look forward to reporting back to you about our progress during Breast Cancer Awareness Month in 2022.

Dina Proto, RN, is the Founder and CEO of Dina Proto International, a DE&I and LGBTQ+ Cultural Competency Consulting firm. In addition to her DE&I Healthcare Consulting firm, Dina is a Published Author, Speaker and Educator. In her book, Identity Impact: When Society's Expectations Collide with the Authentic Self, Dina explores the clinical correlation between society's projection of gender role and identity and healthcare disparities.

Cindi Creager is a media consultant with decades of communications experience in the news industry and LGBTQI non-profit world, including a successful tenure at ABC News, GLAAD, and her co-owned boutique public relations firm, CreagerCole Communications LLC.

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Dina Proto and Cindi Creager