Collection of trans HIV data slow

Despite the mountains of surveillance data about HIV/AIDS, when it comes to the transgender community there is precious little information about the scope of the epidemic. Lee Thornhill, prevention and education manager for TransCEND (Transgender Care and Education Needs Diversity), a trans-focused program at Cambridge Cares About AIDS, said based on the program's work and the experiences of their clients it is clear that transgender women are at increased risk for HIV infection. Yet when the Centers for Disease Control and Prevention (CDC) and local health departments collect surveillance data on new infections, trans women are generally coded into a risk category that does not square with their own identity: men who have sex with men (MSM).

"From an emotional place there's a tremendous invisibility for transgender women to be seen as men. ... What we know on a community level is HIV has really impacted us, and yet we don't have the tools and strategies to deal with that because people aren't being counted [correctly]," said Thornhill.

Michael Shankle, director of AIDS Action Committee's Male Center, added, "Oftentimes transwomen are lumped into that MSM category because it's the view that they are biological, they may have male anatomy - and it is offensive."

For the time being the CDC has no plans to change its surveillance collection efforts to separate out transwomen from the MSM risk category. Dr. Irene Hall, chief of the HIV Incidence and Case Surveillance Branch within the CDC's Division of HIV/AIDS Prevention, told Bay Windows via e-mail that transgender identity may be relevant in discussing the demographics of people infected with HIV, but it is not as relevant in examining the risk factors for infection.

"That being said, if a male-to-female transgender individual has not had gender reassignment surgery and retains male sexual organs and engages in sexual activity with a male that can transmit HIV, categorizing her as having male-to-male sexual contact is currently CDC's best method of identifying the most likely mode of transmission. Mode of transmission doesn't take into account a person's identified gender, just the biological tenets of transmission," wrote Hall.

Despite that stance, the CDC has made changes to its HIV surveillance program to provide more information about transgender people who test positive. Those changes will provide Massachusetts health officials with some of the most comprehensive data in the history of the epidemic on HIV infections in the trans community. Hall said the CDC is currently rolling out a new software system for data collection called eHARS (Evaluation HIV/AIDS Reporting System) that states will use to transmit surveillance data to the CDC. The new eHARS system's demographics questions allow states to identify people by gender as either male, female, or transgender, and for those identified as transgender the system allows states to specify either MTF or FTM. Currently 26 states are using eHARS.

Kevin Cranston, director of the state Department of Public Health's (DPH) AIDS Bureau, said Massachusetts is currently working to implement eHARS and that they hope to have the system up and running by the end of the year. Once that process is complete he said DPH will revise the HIV case report forms that providers send to DPH to allow patients to identify their gender as MTF or FTM.

"This should go a long way toward correctly identifying the true levels of HIV incidence in the transgender population," said Cranston in an e-mail to Bay Windows. "It will remain an epidemiologic challenge to correctly code the exposure mode of HIV/AIDS among persons who identify as transgender, a process which will continue to require a full understanding by the reporting clinician of the actual sexual and drug use risk behaviors of persons diagnosed with HIV/AIDS and which is constrained by the limits of the current CDC surveillance hierarchy."

Yet not all states will follow Massachusetts' lead, even once eHARS is up and running in every state. Hall said states can decide whether or not to include FTM and MTF options on the gender slot of their HIV case report forms, meaning some states will identify transgender patients and others will not. In its annual HIV/AIDS Surveillance Report covering cases from around the country the CDC will only use the gender categories male and female.

CDC is also adding trans-inclusive demographics questions to another HIV-related database that measures the work of counseling and testing programs. Cranston consulted with the CDC over the last several years in its efforts to revamp its Program Evaluation Monitoring System (PEMS) database, which state health departments use to collect information about people seeking HIV counseling and testing services. He said the new version of PEMS, which CDC will roll out this fall, will allow people to identify their gender as either male, female, or transgender, and those who identify as trans will be asked to identify as either MTF or FTM.

The new version of PEMS will also ask clients to list the sex they were assigned at birth. Cranston said initially he and other Bay State health officials were wary of the question, but he said the CDC felt it was the only way to record cases of people who have changed genders but who do not identify as transgender.

Cranston said the new version of PEMS would provide the CDC with more detailed information about transgender people accessing HIV prevention services.

Cranston said he does not know if the CDC will change its practice of grouping transwomen under the MSM banner, but he said in his interactions with epidemiologists at CDC it is clear that they understand the problems with doing so.

"I know the limits of the current system are well understood by the epidemiologists at CDC," said Cranston.

Thornhill said TransCEND has found that understanding the factors that place transwomen at risk for HIV is more complicated than looking at the gender of their sex partners. He said there are a range of risk factors facing TransCEND's clients: many are engaged in sex work as a result of employment difficulties, many are abusing drugs, particularly crack cocaine, and others are at risk for infection as a result of incarceration. In a TransCEND needs assessment survey of 100 transwomen conducted two years ago, 15 percent of those living with HIV reported that they believe they were infected while incarcerated.

Thornhill said despite the lack of federal surveillance data, there has been research showing that transwomen around the country are potentially at high risk for HIV infection. In TransCEND's needs-assessment survey two years ago about one in four respondents reported being HIV-positive. According to a 2007 CDC fact sheet on HIV/AIDS in the transgender community, studies and assessment surveys in various cities have shown anywhere between 14 percent to 69 percent of the transgender population infected with HIV. But Thornhill said without solid epidemiological data on from the CDC, it can be difficult for health officials and advocates to make the case for trans-specific HIV/AIDS services or to get prevention and outreach programs approved for use in the trans community.

Despite those challenges on the federal level Thornhill said DPH has shown its commitment to addressing the epidemic among the transgender community. He said DPH has funded TransCEND through a funding stream officially designated for MSM.

"On a state level, specifically in Massachusetts, the very fact that TransCEND has funding attests to the fact that on the state level they get the importance. ... Even if you don't have tremendous data you can show there's a community need," said Thornhill.

Shankle said DPH has also taken steps to gather information about transgender people accessing counseling and testing even before the implementation of PEMS. The forms for counseling and testing sites currently allow clients to identify as transgender. Shankle said the Male Center is committed to respecting the right of clients to use the gender labels they find most comfortable.

"I think from the Male Center's perspective and for our services we meet people where they're at, and we categorize them based on their self-identity," said Shankle.

Thornhill said he is confident that the CDC will ultimately address the concerns around grouping transwomen under the MSM umbrella.

"In my experience I've met a number of folks in the CDC who get it. It's just the mechanics of data collection and standardizing forms. It's a significant undertaking," said Thornhill.