“When I joined ASCO in 2001, the most important thing to me was networking. I savored the opportunities to come to the annual meeting to meet and to talk with those who had led the studies that would inform standards of care, particularly in gynecologic oncology,” said Don S. Dizon.
“Yet, I recall, even as I started my career as an attending, being acutely aware that I had no idea how many of ‘us’ were present. There were no rainbow flags or welcome events. For the most part, we were invisible.”
Lack of visibility is not uncommon for sexual and gender minority (SGM) communities. Until recently, heterosexism, and binary gender categories were the prevailing assumptions. Sexual orientation or gender identity (SOGI) was not otherwise considered, let alone discussed.
For the at least 10% of Americans who identify as part of an SGM community, stories of microaggression were commonplace and, to this day, are often unacknowledged. For example, a study presented at the 2024 ASCO Annual Meeting reported the survey results from over 800 diverse LGBTQ+ patients with cancer and advocates revealed that even when transgender people disclose their minoritized status, 50% of the time the wrong name and/or pronouns were used by cancer care teams.1 In a report by the Center of American Progress, hostilities including refusal to be seen or refusal of care was reported by 8% and 6% of LGBQ people, respectively; that proportion rises to 29% and 12% for transgender people.2
These are not simply statistics.
“The invisibility and lived experience of LGBTQ+ people contribute high rates of medical mistrust and isolation and drives us to create communities and space where we are seen, belong, and can thrive,” said Shail Maingi, who led the study presented at ASCO.
In 2017, members of the Health Disparities Committee at the American Society of Clinical Oncology (now known as ASCO Health Equity and Outcomes Committee) created a working group to focus on acknowledging and addressing the cancer-related health needs of SGM communities. Their work culminated in an official ASCO position paper3 calling out the unique barriers to quality care that SGM people with cancer face and outlines changes to achieve equitable cancer care for this underserved population.
In 2019, ASCO created the SGM Task Force to actualize the recommendations contained in the report, which was led by Charles Kamen and Maingi. A summary of the work accomplished was published in 2023.4
“Our Task Force saw early on that we had an opportunity to help ASCO become a national leader in guiding oncology practices in the collection of sexual orientation and gender identity data,” said Kamen. “That was our focus over the first years of the Task Force’s work, and ASCO has supported ongoing research in that area.”
This working group was dissolved in 2023 and in its place the Sexual and Gender Minority Advisory Group has been created, chaired by Dizon, and housed within ASCO’s Equity, Diversity, and Inclusion Committee.
In addition, ASCO supported the formation of the LGBTQ+ Community of Practice (COP), and the inaugural meeting was held at the 2024 ASCO Annual Meeting. Like others, this COP is self-organized and takes a grassroots approach to community building, inclusive of peers, advocates, people with cancer, and allies. As discussed in Chicago, we aim to collectively advance health equity for SGM people with cancer and increased visibility within the oncology workforce.
“The establishment of the ASCO LGBTQ+ COP is timely,” said Chungkit Fung, who co-chairs the COP. “As LGBTQ+ patients with cancer face unprecedented potential restrictions to their healthcare due to anti-LGBTQ+ state legislations.”
Indeed, according to the American Civil Liberties Union, there are currently 106 health care restrictions in the state legislatures as of May 2024.5
I recall, even as I started my career as an attending, being acutely aware that I had no idea how many of ‘us’ were present. There were no rainbow flags or welcome events. For the most part, we were invisible.
Don S. Dizon
“These state-level proposals, if passed, will have a significant adverse impact for LGBTQ+ patients with cancer, including but not limited to blocking access to supportive resources and life-saving medical treatments; increasing anxiety and depression; and needing to relocate or flee to safer and more inclusive locations,” said Fung.
Paula Chambers Raney, who also co-chairs the LGBTQ+ COP, added that “as a Black, queer patient advocate who has faced systemic bias, my role as a co-chair is not just a position but a commitment to ensure that those most marginalized are represented and heard in every discussion. The impact of the many proposed anti-LGBTQ+ legislations is even more severe for those who are Black, queer, and economically disadvantaged. It is imperative that our community includes voices from all spectrums of the LGBTQ+ community—such as queer providers, trans nurses, bisexual orderlies, and researchers of diverse backgrounds—so that the care we advocate for is truly inclusive and equitable.”
The COP has established the following collective goals:
- To support LGBTQ+ members and allies of the oncology community through networking and a shared space to allow for goals collaboration among oncology professionals committed to ensuring health equity for LGBTQ+ patients with cancer;
- To improve the quality of care of LGBTQ+ patients with cancer through research, advocacy, and education (with particular focus on disparities among queer people of color, ensuring inclusive care for all); and
- To provide a collaborative forum for members to provide input for ASCO to develop initiatives and advocacy agenda to improve the quality of care of LGBTQ+ patients with cancer.
As they look to the future, Fung and Chambers Raney emphasize that the focus of the LGBTQ+ COP “will be on strengthening our community through continued collaboration, advancing research and education to address disparities, and advocating for policies that ensure equitable care for LGBTQ+ cancer patients. Every queer patient deserves equity in their care.”
“My journey as a Black, queer patient advocate who has faced implicit and explicit bias underscores the importance of this representation,” Chambers Raney said.
“It’s crucial that our stories are heard, serving as lifelines for others who share similar experiences. We aim to empower individuals by providing the necessary resources and ensure that doctors and researchers prioritize actual patient stories in their decision-making processes. It’s time for a paradigm shift where our diverse experiences and needs are at the forefront of healthcare innovation and policy,” she said.
As for clinicians and other professionals in oncology, whether a part of our community or an ally, the COP stands as a beacon that we are a part of ASCO and beyond that, a part of the global oncology community.
At the end of the day, we all matter. Hopefully, it means that the days of invisibility are ending, even as the world continues to be a highly volatile place for our community.
References:
- Maingi, S. et al. Disparities uncovered: LGBTQ+ patients report on their cancer care journey. JCO 42, 1516–1516 (2024) doi: 10.1200/JCO.2024.42.16_suppl.1516.
- Mirza, S. A. & Rooney, C. Discrimination Prevents LGBTQ People From Accessing Health Care. Center for American Progress (2018).
- Griggs, J. et al. American Society of Clinical Oncology Position Statement: Strategies for Reducing Cancer Health Disparities Among Sexual and Gender Minority Populations. J Clin Oncol 35, 2203–2208 (2017) doi: 10.1200/JCO.2016.72.0441.
- Kamen, C. S. et al. State of Cancer Care in America: Achieving Cancer Health Equity Among Sexual and Gender Minority Communities. JCO Oncol Pract OP2300435 (2023) doi: 10.1200/OP.23.00435.
- ACLU. Mapping Attacks on LGBTQ Rights in U.S. State Legislatures in 2024. ACLU.com
