Queer women deserve safe, affirming cervical cancer screenings

Screening has led to strides in the prevention of cervical cancer, a disease that was once a leading cause of cancer death for women in the United States — yet there are disparities among who is receiving these lifesaving screenings.

A growing body of evidence indicates that queer* women are significantly less likely than heterosexual women to be screened for cervical cancer. One study found that sexual minority women were nearly 50 percent less likely than those who are heterosexual to have received a Pap test — a routine screening procedure that detects precancerous cells in the cervix.

“Queer women” and “sexual minority women” refer to women who are bisexual, gay, lesbian, pansexual, queer or who otherwise don’t identify as heterosexual.

Deana Williams, PhD, MPH, a research investigator at the MultiCare Institute for Research & Innovation, is leading a study that aims to improve the rate of cervical cancer screening among queer women.

“More than 90 percent of cervical cancers are preventable, but cervical cancer is still a major public health issue in the U.S.,” Williams says. “Current cervical cancer screening initiatives are not meeting the needs of queer women, and we need to change that.”

Inequities have many causes

Nearly all cases of cervical cancer are caused by strains of the human papillomavirus (HPV). HPV is a common sexually transmitted infection (STI) — so common that the Centers for Disease Control and Prevention (CDC) reports that almost all sexually active people will get HPV at some point in their lives if they aren’t vaccinated. (HPV can also spread through skin-to-skin contact during a sexual encounter.)

HPV often resolves on its own, but sometimes it can cause genital warts or cancers, including cervical cancer. Routine screenings — such as Pap tests and HPV tests — can increase the chances of catching cervical cancer early, when it can be easily treated or cured.

Why are queer women less likely than heterosexual women to be up to date on these routine screenings?

“Queer women are more likely to be uninsured or underinsured, which makes routine care less accessible,” Williams says. “Many queer women also delay or avoid reproductive health care due to previous experiences of discrimination in clinical settings.”

An article published in the Journal of the American Medical Association cites another reason — many sexual minority women (along with other specific groups) did not receive screening because they didn’t know they needed it.

“Not all reproductive health care providers are culturally competent in LGBTQ+ health,” Williams says. “We know from the literature that in some cases queer women have been told that they aren’t at risk for cervical cancer, so sometimes there is a knowledge gap when it comes to providing care for this population.”

Regardless of the reason, not keeping up with regular screenings can have serious consequences. When cervical cancer is diagnosed at more advanced stages, it may have spread to other parts of the body and can be fatal. In 2023, over 4,000 U.S. women died from cervical cancer, according to the National Cancer Institute.

Disparities in cervical cancer screenings can have other consequences as well.

“When queer women are not accessing screenings, they’re also missing out on advancements in cancer care and treatment, including clinical trials,” Williams says. “LGBTQ+ individuals as a population continue to be vastly underrepresented in cancer research.”

What to know about cervical cancer screening and vaccination

• Everyone with a cervix should receive routine screenings for cervical cancer. When to start screening and how often to get screened depends on your age and health history. Visit the National Cancer Institute to learn more about specific screening recommendations and which tests are available.
• Vaccination is another tool to help prevent cervical cancer as well as cancers of the throat, anus or genitals that are caused by HPV. The CDC recommends preteens of any gender receive the HPV vaccine. Learn more about HPV vaccination.

Addressing the screening gap

In August 2023, Williams and her research team launched a study to develop and test a culturally conscious intervention to increase cervical cancer screening among queer women.

During the first stage of the study, the research team convened a steering committee of racially and ethnically diverse community members to provide feedback on aspects of the study, including recruitment, research questions and study results once they’re available. Steering committee members have lived experiences as queer women, expertise in reproductive health care or both.

“Having the community involved in guiding the study helps ensure that the work is responsive to and grounded in the community’s needs, priorities and lived experiences,” Williams says. “Research that aims to benefit queer women should have queer women leading the way in all decision-making.”

The second stage of the study involves interviewing approximately 35 queer women to gain their perspectives about barriers to cervical cancer screening and how those barriers could be eliminated. Williams and her research team will use this information to inform the development of their intervention — with the long-term goal of reducing disparities in cervical cancer screening. Recruitment for this part of the study is ongoing.

“When we talk about health care disparities queer women experience, it’s important to note that their sexual identity itself is not what causes these disparities,” Williams says. “It’s the accumulated disadvantages they experience within the health care system, and society, that lead to worse health outcomes. The more we can do remedy those injustices, the better health outcomes queer women will experience.”

* MultiCare recognizes the long history of the use of the word “queer” as a derogatory term. In this case, “queer” is used in this story both for accuracy and to respect the way the researcher interviewed describes the nature of her work — which is being conducted in partnership with community members who identify as queer. We did not use the term “LGBTQ+” because the study does not focus on all people represented by this acronym. “Queer” ensures the collective inclusion and visibility of all non-heterosexual women and is frequently used in research studies aimed at advancing health equity for this community.