Do We Count (Part 2)

Again trying to get data about the transgender community is very hard; this time the CDC is trying to get medical data about us. On the CDC AIDS/HIV page on trans-people they state,

Because data for this population are not uniformly collected, information is lacking on how many transgender people in the United States are infected with HIV. However, data collected by local health departments and scientists studying these communities show high levels of HIV infection and racial/ethnic disparities.

Some of the concussions that the CDC made should raise eyebrows,

Findings from a meta-analysis of 29 published studies showed that 27.7% of transgender women tested positive for HIV infection (4 studies), but when testing was not part of the study, only 11.8% of transgender women self-reported having HIV (18 studies). In one study, 73% of the transgender women who tested HIV-positive were unaware of their status. Higher percentages of newly identified HIV-positive test results were found among black/African American transgender women (56.3%) than among white (16.7%) or Latino (16.1%) transgender women; and self-reported HIV infection in studies made up of predominantly of black/African American transgender women (30.8%) was higher than positivity reported in studies comprising mainly white transgender women (6.1%). Studies also indicate that black transgender women are more likely to become infected with HIV than non-black transgender women.

One of the problems that we as a community face is that if you ask a hundred trans-people their definition of transgender, you will get a hundred different answers and it is not just transgender but all the terms used to describe us.

In the Canadian survey they ask “Which of the following describes your present gender identity? (Please check all that apply)” and they go on to list a number of categories like “Boy or Man,” “Two Spirit,” “Trans-man,” and “Other” and they also ask for your gender assigned at birth. However, one of the problems faced with that approach is that we all have different definitions for those words.

A few years back I worked with a team to develop a survey instrument to gather data on the trans-community and AIDS/HIV. Our approach was different in that we also asked questions like “Do you go out in public dressed in clothes other than your gender assigned at birth?” “How often do you do that?” What we were trying to do is gather data to understand their behavior so that we would be able to figure out what they meant when they checked the box “two spirit” or “transgender” or “drag queen”

So that is one of the problems with the CDC data, therefore when you read something like this,

Findings from a meta-analysis of 29 published studies showed that 27.7% of transgender women tested positive for HIV infection (4 studies), but when testing was not part of the study, only 11.8% of transgender women self-reported having HIV (18 studies). In one study, 73% of the transgender women who tested HIV-positive were unaware of their status. Higher percentages of newly identified HIV-positive test results were found among black/African American transgender women (56.3%) than among white (16.7%) or Latino (16.1%) transgender women; and self-reported HIV infection in studies made up of predominantly of black/African American transgender women (30.8%) was higher than positivity reported in studies comprising mainly white transgender women (6.1%). Studies also indicate that black transgender women are more likely to become infected with HIV than non-black transgender women.

The first question that you should ask is “What do they mean by ‘transgender’?” Do they mean drag queens? Or do they mean post-op transsexuals? Or do them lump us all together? Which is probably what they do, however, each group of trans-people probably has different sexual behaviors that expose them to different risks. Someone who goes clubbing one night a month and has a different sexual partner each time will have a different health risk that someone who has had the same partner for five years.

What the CDC gets right is…

• Identifying transgender people within current data systems can be challenging. Some transgender people may not identify as transgender due to fear of discrimination or previous negative experiences. Since some people in this community do not self-identify as transgender, relying solely upon gender to identify transgender people is not enough. Gender expression may fluctuate for some transgender people due to issues such as perceived safety or reluctance to identify as transgender in certain situations. The Institute of Medicine has recommended that behavioral and surveillance data for transgender men and women should be collected and analyzed separately and not grouped with data for men who have sex with men. Using the 2-step data collection method of asking for sex assigned at birth and current gender identity increases the likelihood that all transgender people will be accurately identified.
• It is important to avoid making assumptions about sexual orientation and sexual behavior based on gender identity because there is great diversity in orientation and behavior in this population, and some identify as both transgender and gay, heterosexual, bisexual, or lesbian. For example, transgender men claim a variety of sexual orientations and have sexual partners that include gay men and transgender women.
• Transgender men’s sexual health has been understudied. Compared to transgender women, little is known about HIV risk and sexual health needs among transgender men. One meta-analysis of 29 studies involving transgender people showed that only 5 of them had separate data concerning transgender men.
• Behaviors and factors that contribute to high risk of HIV infection among transgender people include higher rates of drug and alcohol abuse, sex work, incarceration, homelessness, attempted suicide, unemployment, lack of familial support, violence, stigma and discrimination, limited health care access, and negative health care encounters.

[…]

• Police policies can conflict with public health initiatives. For example, some law enforcement officers and agencies view the presence of condoms as evidence of sex work, even though public health initiatives identify condoms as a way to prevent HIV infection.
• Health care provider insensitivity to transgender identity or sexuality can be a barrier for HIV-infected transgender people seeking health care. Although research shows a similar proportion of HIV-positive transgender women have health insurance coverage as compared with other infected people who are not transgender, HIV-infected transgender women are less likely to be on antiretroviral therapy.

What they also are doing right is modifying their data collection forms to include transgender status. However, if the forms don’t differentiate the different types of trans-people we will all be lumped together.