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George's LGBTea: U.S. Data Collection is Needed For Transgender Community

NMAC’s annual conference, USCA (the United States Conference on AIDS), brought some of the best and brightest together for a necessary conversation about the state of the HIV epidemic in 2017. As I took on a dual role of media representative and panelist for several topics, I discussed some of my concerns within marginalized populations, primarily that of the transgender community. The conference made it clear that although much progress had been made, we are still behind in the recording of transgender data; with that lack of data being a detriment to the help needed within the transgender community around treatment, services, and resources.

According to the CDC, in the United States almost one million people identify as transgender. The statistics also state that “[f]rom 2009 to 2014, 2,351 transgender people were diagnosed with HIV in the United States.b Eighty-four percent (1,974) were transgender women, 15% (361) were transgender men, and less than 1% (16) had another gender identity.”

Among these diagnoses, more than half were among African Americans, with the rate of HIV diagnosis among all transgender persons being three times the national average. This, in part, is due to the fact that the transgender community faces a multitude of issues and barriers which have created the environment for HIV transmission to be much higher than most race/gender demographics. The six barriers listed include sex work, lack of cultural competency, lack of study around transgender health, lack of behavioral interventions, stigma and discrimination, and transgender-specific data collection as an issue for many organizations required to do so.

The CDC states that “Some federal, state, and local agencies do not collect or have complete data on transgender individuals. Using the two-step data collection method of asking for sex assigned at birth and current gender identity can help increase the likelihood that transgender people are correctly identified in HIV surveillance programs. Accurate data on transgender status can lead to more effective public health actions.”

For further clarification on this issue, the Center of Excellence for Transgender health delved deeper into the collection practices of agencies and offered some suggestions on some methods that could improve data collection.

According to the Center, “Accurate data collection is essential for dissemination of reliable and factual public information and development of meaningful education and prevention programs, and care services. Currently many federal, state, and local agencies inaccurately collect data about individuals' sex and gender. Most often, only one question is asked: What is your sex? or What is your gender? and only 2 or 4 options are provided requesting only one choice: Male or Female, or Male, Female, Male-to-Female (MTF), or Female-to-Male (FTM).”

In the past, this methodology was chosen when populations within subcultures were lumped into more binary identities. However, the Center now feels that “this method is too simplistic and binary to accurately and effectively collect critical information to assess HIV incidence and prevalence, identify emerging trends, allocate resources, improve health care services, and address service gaps among populations of individuals.”

To gain further insight, I spoke with Dana Hines, Assistant Professor of Nursing at George Washington School of Nursing. She stated that “historically, researchers have encountered challenges with engaging trans populations in social and behavioral research. Issues such as mistrust and chronic stigma and discrimination attribute to the trans population's reluctance to participate in research studies.”

She hasn’t lost hope, however, and has implemented several strategies to counteract the mistrust from the community. Dana uses techniques and approaches like a community advisory board that is representative of the trans community to advise/inform her about best approaches for recruitment.

She stated: “I have also used venue-based sampling where I target my recruitment areas to social settings and venues frequented by the trans population. Engaging key community leaders in the trans community has helped me establish trust with the community and has also enhanced my ability to find trans people in the community.”

To record the data, Dana uses “a combination of field notes and digital recording to accurately capture interviews with study participants.”

When asked about methods that should be used moving forward, Dana had several suggestions as to what organizations can do to track the trans population with more accuracy and efficiency, and noted some of the major hurdles faced from a government instituting tools of erasure against the trans community.

“We need to reinstate SOGI (sexual orientation and gender identity) collection in the U.S. Census. In addition, we need more hospital and social service systems to collect data on gender at birth and current gender. In March, 2017 the Trump administration decided that the U.S. Census Bureau would no longer collect LGBT data (Fernandes, 2017). Suppressing the collection of sexual orientation and gender identity data limits our ability to estimate the size of the trans population, describe their geographical distribution, and masks their utilization of health care services. Rolling back the collection of SOGI data, which started under the Obama administration, will further inhibit efforts to demonstrate the need for services targeting this population. A perspectives piece published recently in LGBT Health by Cahill & Makadon (2017) cautioned that these recent actions may also inhibit the collection of SOGI data in clinical settings and thus limit our ability to understand barriers that this population may encounter when accessing services and, as a result, worsen health disparities in this population. Until these issues are addressed at a broader, structural level, the systemic erasure of this population will continue and we may never achieve an accurate count of the trans population,” she concluded.

Data collection will be an important tool going forward as more people within the country begin to comfortably identify as transgender. It is impossible for us to move the conversation forward around the services and resources that the transgender community needs if we are not properly accounting for them in the demographics being shared during these conferences, which in turn get used by organizations, hospitals, and clinics as reference tools. We must also, as community leaders and liaisons, speak out against the removal of identity markers within the census to prevent erasure of the trans community, which faces a slew of dehumanizing legislation and actions on various levels of society.

The transgender community is growing and vibrant, and deserves to be counted just as every other human.


(Resources used for the quotes from Dana - Fernandes P. The census won't collect LGBT data: That's a problem. The New York Times 2017. 

Cahill SR, Makadon HJ. If They Don't Count Us, We Don't Count: Trump Administration Rolls Back Sexual Orientation and Gender Identity Data Collection. LGBT health. 2017;4(3):171-173.)