{"id":46611,"date":"2024-05-01T12:00:00","date_gmt":"2024-05-01T12:00:00","guid":{"rendered":"https:\/\/www.cancer.gov\/news-events\/cancer-currents-blog\/2024\/cancer-disparities-lgbtq-plus-people"},"modified":"2024-11-03T15:11:51","modified_gmt":"2024-11-03T15:11:51","slug":"lgbtq-voices-listening-to-sexual-and-gender-minority-people-affected-by-cancer","status":"publish","type":"post","link":"https:\/\/ogkologos.com\/en\/lgbtq-voices-listening-to-sexual-and-gender-minority-people-affected-by-cancer\/","title":{"rendered":"LGBTQ+ Voices: Listening to Sexual and Gender Minority People Affected by Cancer"},"content":{"rendered":"

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LGBTQ+ people face disparities across all aspects of cancer and cancer care. Researchers are working with LGBTQ+ communities to better understand and address these disparities.<\/p>\n

Credit: iStock<\/p>\n<\/p><\/div>\n<\/figcaption><\/figure>\n<\/p><\/div>\n

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This story has an accompanying Q&A with Dr. Gwendolyn Quinn, Ph.D., of the New York University Perlmutter Cancer Center, on some of the challenges faced by LGBTQ+ people with cancer and ways to address them<\/a>.<\/p>\n<\/div>\n

After surgery for breast cancer 2 years ago, Asiyah Franklin, who identifies as queer, asked her health care team when she could become sexually active again.<\/p>\n

\u201cThey had given me guidance about returning to activities such as driving after my double mastectomy,\u201d she said. \u201cI wanted to know when I could resume having sex.\u201d<\/p>\n

But Franklin, who is a nurse, did not get the medical advice she sought. Instead, she had \u201can awkward conversation\u201d with a doctor and did not receive an answer to her question.<\/p>\n

The exchange was one of several that left Franklin feeling \u201cunheard and unseen while undergoing treatment for cancer,\u201d she said.<\/p>\n

Franklin\u2019s experience highlights the challenges that sexual and gender minority (SGM) people with cancer may face. SGM is an umbrella term that includes lesbian, gay, bisexual, transgender, queer, intersex, and asexual individuals, as well as people who are neither heterosexual nor cisgender (LGBTQIA+).<\/p>\n

Although research on cancer and SGM people has been limited, this group reports less satisfaction with cancer care<\/a> and is more likely to have experienced discrimination in health care settings than non-SGM people.<\/p>\n

The rates of certain cancers, such as anal, breast, and cervical cancer, may differ between SGM subgroups and non-SGM people, though researchers lack the data to definitively answer this question. Some risk factors for cancer, such as tobacco use and infection with cancer-causing viruses, appear to be more common in SGM subgroups<\/a> than non-SGM groups.<\/p>\n

In addition, transgender and gender-diverse individuals are less likely to be up to date on their recommended cancer screening tests<\/a> than non-SGM people. The reasons, researchers say, are complex and may include a lack of health care providers trained to care for SGM people.<\/p>\n

There is also evidence that SGM people are less likely to seek care for possible symptoms of cancer than non-SGM people, and, as a result, their cancers may be diagnosed at a more advanced stage.<\/p>\n

\u201cSGM people experience disparities across all aspects of cancer and cancer care,\u201d said Matthew Schabath, Ph.D., of the Moffitt Cancer Center, who studies health disparities among SGM populations. \u201cBut we do not yet understand the true breadth and depth of these disparities.\u201d<\/p>\n

The good news, Dr. Schabath continued, is that the number of researchers interested in studying these disparities has been growing.<\/p>\n

A national conference on SGM people and cancer<\/h2>\n

Many of these investigators attended the first national conference dedicated to research on cancer among SGM people<\/a>, in October 2023. With nearly 200 attendees, including experienced researchers and young investigators, the gathering marked a milestone for the field.<\/p>\n

\u201cThe conference was invigorating,\u201d said Ulrike Boehmer, Ph.D., of Boston University School of Public Health, who has studied SGM populations and cancer for several decades.<\/p>\n

\u201cCancer among SGM people is an important and neglected topic,\u201d Dr. Boehmer continued. \u201cBut more researchers have embraced the field recently, and they were able to connect and exchange ideas at the conference.\u201d<\/p>\n

In addition to scientists, the NCI-sponsored meeting drew health care providers, patient advocates, SGM cancer survivors, and representatives of agencies that fund cancer research. New York University’s Perlmutter Cancer Center hosted the event.<\/p>\n

The participants presented new research, discussed priorities for future studies, and shared lessons learned about securing research funding. A panel of SGM people affected by cancer added patient perspectives.<\/p>\n

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After being treated for breast cancer, Asiyah Franklin, a nurse who identifies as queer, joined a community advisory board for NCI-supported researchers.<\/p>\n

Credit: Courtesy of Asiya Franklin<\/p>\n<\/p><\/div>\n<\/figcaption><\/figure>\n<\/div>\n

Working with SGM communities to reduce cancer health disparities<\/h2>\n

The meeting had two aims: to develop an overarching agenda for future research and to create opportunities for young investigators to connect with potential mentors.<\/p>\n

Both goals are critical for developing the knowledge needed to guide decisions about cancer care for SGM people, according to Shine Chang, Ph.D., of the University of Texas MD Anderson Cancer Center, who attended the conference.<\/p>\n

There is considerable diversity among and within SGM subgroups, Dr. Chang noted. It\u2019s clear, she added, that researchers need to work closely with SGM communities to identify cancer-related disparities affecting these communities and ways to address their needs.<\/p>\n

\u201cVoices from SGM communities can help shape how researchers conduct studies,\u201d Dr. Chang said. Getting buy-in from these communities before developing strategies to reduce health disparities is critical, she added.<\/p>\n

LGBTQ+ identification has become more common<\/h2>\n

Identifying as LGBTQ+ has become more common. In the United States, 7.6% of the adult population identifies as lesbian, gay, bisexual, transgender, or something other than heterosexual, according to a new Gallup poll<\/a>. In 2017, 4.5% of the population identified as LGBTQ+.<\/p>\n

The poll also found that LGBTQ+ identification was more common in younger generations. More than 22% of adult members of Generation Z\u2014defined as those born between 1997 and 2012\u2014identified as LGBTQ+. The rate was nearly 10% among millennials (born 1981\u20131996) and less than 5% among older generations.<\/p>\n

\u201cIf you\u2019re a health care professional working with adolescents and young adults with cancer, chances are very good that you\u2019re going to work with a patient who is LGBTQ+,\u201d said Charles Kamen, Ph.D., of the University of Rochester, who studies health equity<\/a>.<\/p>\n

It\u2019s important, Dr. Kamen continued, for health care professionals to be aware of the challenges that LGBTQ+ adolescents and young adults with cancer may face. Some of these young people might not have disclosed their sexual orientations to their parents, for example.<\/p>\n

\u201cA cancer diagnosis can exacerbate the already difficult issues young LGBTQ+ people are dealing with,\u201d Dr. Kamen said.<\/p>\n

Who identifies as a sexual and gender minority person?<\/h2>\n

Part of the meeting focused on a challenge for the field: the lack of data on SGM people and cancer.<\/p>\n

Although national cancer registries collect information on variables such as age, race, and ethnicity, they do not collect data on sexual orientation and gender identity. Cancer clinical trials also do not routinely collect that data.<\/p>\n

So, for most of the people with cancer in the United States, \u201cwe don\u2019t know who identifies as a sexual and gender minority person,\u201d explained Sarah Jackson, Ph.D., of NCI\u2019s Division of Cancer Epidemiology and Genetics, who studies cancer in transgender and gender-diverse individuals.<\/p>\n

The lack of sexual orientation and gender identity data in national cancer registries limits the kinds of studies that are possible, she continued. Researchers cannot, for instance, compare national data on SGM and non-SGM groups to see how they might differ in cancer incidence, survival, or response to treatment.<\/p>\n

Without these data, researchers have often relied on health surveys. The OUT National Cancer Survey<\/a> and the Behavioral Risk Factor Surveillance System<\/a>, for instance, capture sexual orientation and gender identity data as well as health data. And some large health studies, including NIH\u2019s All of Us study<\/a>, do as well.<\/p>\n

\u201cWe need to include the collection of these data in everything we do\u2014every single survey, every cohort study<\/a>, and every clinical trial,\u201d Dr. Jackson said.<\/p>\n

For the last few years, NCI has been supporting studies designed to learn how best to collect sexual orientation and gender identity information. Investigators involved in this work at various cancer centers shared their findings at the conference.<\/p>\n

There is also support in the cancer registry community for collecting sexual orientation and gender identity information in the future, according to Kathy Cronin, Ph.D., of NCI\u2019s Surveillance Research Program.<\/p>\n

\u201cThere is a recognition that this information is important to collect if we are to better understand cancer risks and inequities in outcomes,\u201d Dr. Cronin said.<\/p>\n

Recognizing the different identities in SGM people with cancer<\/h2>\n

Knowing who identifies as an SGM person with cancer would help researchers address another challenge: Understanding how a person\u2019s experience with cancer is shaped not only by their SGM status but also by other factors, including their racial, ethnic, and socioeconomic backgrounds.<\/p>\n

\u201cWe all have different parts of our identities, such as living in a rural area, being a non-English speaker, or having a disability,\u201d said Gwendolyn Quinn, Ph.D., a health psychologist at New York University Perlmutter Cancer Center.<\/p>\n

But researchers have only just begun to understand how the different parts of a person\u2019s life may work together to affect their cancer risk and access to quality health care. Participants at the conference said this research should be a priority.<\/p>\n

\u201cThe field is moving toward trying to better understand the intersection of people\u2019s different identities, including their SGM status,\u201d Dr. Quinn said.<\/p>\n