On April 24, during the “She the People” presidential forum at Texas Southern University in Houston, presidential candidate Elizabeth Warren found herself on the receiving end of a critical question.
According to the Centers for Disease Control and Prevention, the number of black mothers who’ve died each year between 2011 and 2015 is three to four times higher than white mothers during and after pregnancy.
Audience member Monifa Bandele, senior vice president of a nonprofit called MomsRising.org, asked the senator: “What will you do to address this crisis that persists independent of education and income?”
Warren said that she had a plan.
By awarding a bonus fund to American hospitals for reducing their maternal mortality rates—and ensuring that money is taken away should they fail—Warren wants to use a new kind of approach to encourage hospitals to take better care of new mothers, especially marginalized women of color.
The case for better maternal health care for marginalized mothers has received some attention in the 2020 presidential campaign, and hopefully we will see positive change for black American mothers because of it.
But while we’re focusing on how to fix our health care systems for marginalized people, there’s another pressing medical issue that continues to be ignored in mainstream politics.
A 2019 study published in the Journal of Clinical Oncology sheds some light on this epidemic. Researchers from the Moffitt Cancer Center and Research Institute and New York University’s School of Medicine found that fewer than 40% of the 450 oncologists surveyed in cancer centers across the country said they were adequately equipped or informed to treat a cancer patient who identifies as LGBTQ+.
“Back in 2015, our group published several formative papers regarding cancer and the LGBTQ population,” said Matthew B. Schabath, who is a cancer epidemiologist and the lead researcher for the study.
“What we found was there was very little published data regarding cancer in the LGTBQ community; however, the available data certainly revealed disparities for specific cancer types. Cancer in the LGBTQ community is an ignored epidemic, and at present there is very little to address this at state and federal levels.”
Not surprisingly, this gap in medical knowledge often translates into stigma and prejudice in exam rooms, which in turn makes members of the queer population wary of seeking health care when diagnosed with cancer.
“Although my doctor knew all about me,” said an anonymous respondent to an online survey conducted by the National LGBT Cancer Network in 2012, “each encounter with new people—with blood draws, ultrasound, breast x-ray, etc.—had the basic anxiety of the procedure and layered on to that, the possibility of homophobia and having to watch out for myself.”
For the queer population in the United States, increased cancer risks coupled with decreased screening rates leads to a disproportionate number of cancer diagnoses throughout the country, explained Liz Margolies, executive director of the National LGBT Cancer Network. Once diagnosed, queer people fare considerably worse than the general population in treatment and report lower levels of satisfaction and care, she added.
Sexual orientation and gender identity aren’t cancer risk factors per se, Schabath clarified. But they are significant and important to consider.
The LGBTQ+ community is at increased risk of poorer outcomes for certain cancers because of lower access to health care, less likelihood of engaging in early detection and cancer screenings, and higher rates of psychological distress and risk-prone behavior.
The increased risks are a result of the stress and stigma of living as sexual and gender minorities, said Margolies. “For example, LGBT people have higher rates of tobacco and alcohol abuse, increasing the risk for multiple types of cancer. Lesbians are considered to have the densest cluster of breast cancer risks: smoking, drinking, lower likelihood of having a biological child before age 30 and high rates of obesity and eating a high-fat diet,” she said.
The socio-political setup in the country sets queer people in circumstances that are hugely different from cisgender folks, which is why being able to competently deal with their healthcare needs requires special medical training.
However, Margolies said that most medical students receive no more than five hours of LGBTQ+-focused training throughout their time in medical school, and most nurses receive only two hours.
As a result, as per the 2015 US Transgender Survey, one in five transgender patients have been turned away by their doctors or even been asked to “stop being transgender.”
Both Margolies and Schabath seem to agree on an increasing need for would-be doctors to receive more meaningful education on treating LGBTQ+ patients as part of their medical school curriculum. But there isn’t evidence that this will happen any time soon. In fact, things look like they’re potentially moving in the opposite direction.
The current political environment does little to help the situation. In May, the White House announced a new set of regulations that will allow medical professionals to refuse to treat patients who identify as LGBTQ+. This is the latest in the slew of “conscience protections” put into effect by this administration. Toward the end of the same month, the Department of Health and Human Services announced changes to its interpretation of Section 1557 of the Affordable Care Act, effectively upending the provisions that protected patients from discrimination on the basis of gender identity.
In the United States, two out every 100,000 people are diagnosed with anal cancer each year. That doesn’t sound like a very big number, but it increases considerably when focusing on the LGBTQ+ community. In fact, HIV-negative men who have sex with men (MSMs) are up to 20 times more likely to be diagnosed with anal cancer. HIV-positive MSMs, on the other hand, are at a 40 times higher risk than the non-LGBTQ+ population. Meanwhile, lesbian women who do not have biological children are at an increased risk of cervical and endometrial cancers.
Transgender men and women are the least likely to have medical insurance. And even when they do, they may not be eligible for certain screening tests due to confusing insurance legislation. A transgender man with an intact cervix, for example, would be ineligible for screening for cervical cancer if they were listed as male in their insurance papers. Transgender women with an intact prostate gland may face the same issue.
“I am absolutely distraught,” said Liz Margolies. And shouldn’t we all be?
The clear lack of quality research into the ways in which cancer affects queer people—and how we can prevent these behaviors—makes them one of the most vulnerable people for many different types of cancer.
Yet the study published this year was, to our knowledge, the first of its kind. That’s a dismal measure of how seriously the medical field is focusing on the health of an overall demographic that cuts through each and every socioeconomic, racial-ethnic, geographic, etc, layer of all of our communities. Perhaps more, and better, institutional research is the best place to start.
While expressing deep dismay at the conditions befalling queer people trying to seek cancer healthcare, Margolies insisted on the need to remain positive. “My work is not over,” she said. “We just have to fight harder to eliminate the disproportionate cancer burden on my community.”
With the 2020 presidential race underway, we can also prompt our political leaders to publicly discuss this crisis. After the She the People forum, we saw candidates scramble to speak on their strategies to improve maternal health for black mothers, and hopefully this leads to real and much-needed change. If more candidates are asked about preventing cancer in queer patients, perhaps we can hope for better health care policies, and a healthier medical culture, to support the LGBTQ+, and give us some hope.