Trust critical in TB outbreak among transsexuals
RFLP analysis helps establish the links
When an outbreak of TB hit Baltimore’s transsexual subculture, getting a handle on the situation was anything but easy. In the end, it took lots of tact, diplomacy, and time to win the trust of a community that’s exceptionally wary of outsiders. To do what trust alone could not, some high-tech tools came in handy as well.
In the summer of 1998, TB controllers in Baltimore began to suspect something unusual might be afoot. Between June and August of that year, four young men — all transsexual, all African-American — turned up sick with TB at various area health care facilities. When specimens from the case cultures were submitted to RFLP (restriction fragment length polymorphism) analysis, they matched. By June of the following year, there would be 16 more cases of TB confirmed among people who fit the same unusual demographic profile.
Because the lives of those involved were secretive, the investigation was not merely unusual but also extremely challenging, say insiders.
To begin with, even some of the most streetwise investigators needed help with their definitions. How was being transsexual different from being a transvestite, or from being gay? Did all transsexuals use hormones and aspire to have sex-change surgery? As a resource, some staff members watched the video Paris Is Burning, which documents the lives of a boisterous community of transsexuals and drag queens who travel up and down the East Coast taking part in rather unconventional beauty pageants.
Even with the basic concepts in hand, gaining the trust of the group was far from a simple matter. The use of aliases was widespread, making contact investigations difficult. Most members of the community used marijuana, and although not technically homeless, group members were highly mobile, moving from place to place, with many engaging in prostitution to support themselves.
As investigators gradually came to understand, community members (who included some female friends and admirers) tended to move among one of three houses, each named after a house of fashion (one place is said to have been dubbed "the House of Gucci," for example). The houses’ residents functioned as a kind of de-facto family, with a "mother," a "father," and "children." Residents paid rent, or, if funds were scarce, they just visited.
One TB patient among the group also was a member of a marching band, which traveled, usually by charter bus, around the country to play engagements. Finally, just as in the video, members of the group took part in pageants, traveling up and down the East Coast from Atlanta to Philadelphia to Washington to New York.
Uncovering enough of those details to do effective contact investigation required enormous patience. In the end, according to a professional familiar with the investigation, four outreach workers won the confidence of the community, with one female investigator playing an especially important role.
Due to the sensitive nature of the investigation, TB investigators asked for anonymity in providing information for this article.
RFLP studies were vital in helping investiga -tors in the lab establish links between the cases. Initially, a matching 11-band pattern was found in four isolates from the cases that turned up in the summer of ’98. Now that an additional 16 cases have been identified, investigators say 16 of 20 cases show RFLP linkage (with RFLP analysis pending for three of the remainder). What made establishing the links especially critical is the fact that of the 20 cases confirmed so far, 12 have been found to be infected with HIV, a factor that greatly increases the probability that someone infected with latent TB will develop active disease.
Contact tracing among three families’
Contact tracing at the houses was challenging, insiders say, even once outreach workers had begun to win the trust of the house families. An investigator would show up at a house, schedule a screening, and come back on the appointed day only to find that just a few of the residents had remembered to show up. Ultimately, 10 of 20 cases were linked to one of the three houses.
Owners of various nightspots the group frequented had to be persuaded to give permission for investigators to come onto the premises and talk to patrons. Carrying out the nightspot screenings took its own kind of toll on investigators because the clubs didn’t begin to fill up until the wee hours of the morning.
Of 102 "close contacts" identified, skin tests were placed on 81 people and read on 59; 19 were positive (defined as reactions of more than 5 mm) for a positivity rate of 32%.
Fortunately, the director of the marching band, like the nightclub owners, agreed to cooperate with investigators. In that part of the investigation, 83 marching-band members were identified as contacts; 76 had skin tests placed, and 58 had their tests read. With only four contacts showing a positive reaction (again defined as over 5 mm), positivity was only 7% in that group.
As for the beauty pageants, TB controllers worked hard to get out the word to other cities where these contests were held, offering to supply the RFLP banding pattern as well as a patient profile. Initially, the response from other cities was cool; as the case began to heat up and attract notice from national TB experts, cooperation and interest increased.
So far, no cases outside Baltimore have been linked to the outbreak. Whether the outbreak is at an end in Baltimore is not yet known. Though some cases have completed the long course of therapy, others have not. Among those who are HIV infected, some are not consistently receiving the therapy they should. Overall, achieving good compliance is said to remain challenging.
You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
- Award-winning Medical Content
- Latest Advances & Development in Medicine
- Unbiased Content