the lost children of rockdale county
Dr. Kathleen Toomey: Director of Georgia Division of Public Health
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When did you first hear about Rockdale's syphilis?

dr. kathleen toomey I was working as a state epidemiologist in Georgia and in that capacity I was head of the AIDS and the sexually transmitted diseases program. And it must have been in early 1996 I got a call from the woman who was in charge of the Rockdale Health Department. ... And what was unusual [was] there was a large number of young, affluent white teenagers that they diagnosed in their STD clinic with syphilis. ... Although we have high rates of syphilis in Georgia, it's very unusual in that particular affluent county and it's unusual among middle class individuals. And so that we knew right then that this was something that we needed to look at. ...

How were the kids described to you?

They were described to me as beautiful goddesses, young teens that [were] almost cherubic in some of their characteristics. And again very young. Some of them 13 years of age and older. ...

What was your strategy at the state level in helping the local health department contain this epidemic?

Our strategy was try to give them all the support [we] could to do a very intensive investigation, to identify all the teens that might be involved. To identify all the sex partners. ...

Who did you send down there?

... To help the Rockdale Health Department do this investigation we wanted to do two things. One is find specially-trained interviewers who could [work] specifically with teens. Because not every interviewer works well with teens. But also interviewers who could fit well into that community. It was not a community that had a lot of syphilis outbreaks. And so we wanted to get folks who could fit into that community as well and not raise alarms just by their presence. And so we got a specially trained team with an anthropologist from Emory, as well as a specialist in sexually transmitted disease from Emory, to work with us and some of their special investigators to do intensive interviews of the teenagers and to identify ... this cohort of kids who were hanging out together and having sex together. ...

What is a "partner investigation?" Why is it so important to ask the kids about their partners?

Partner notification is the process that has been a foundation of STD prevention for many years. And in general what it involves is the voluntary interviewing of a patient and asking him or her about their sex partners so that you can in turn go and offer treatment to those sex partner or partners. And what was different about what was going on here was the number of partners that these youngsters had--and I'm calling young youngsters because they were relatively young teens. And that in fact as we followed this network of teens and their sex partners we were coming up with dozens and dozens and dozens of sex partners being identified. ...

As I understand it, every outbreak has a matrix. What did this matrix look like?

Because of the number of sex partners that these teens had, it was so voluminous it actually didn't look like a matrix at all but a ball of yarn. ... This entire cohort of teens was extremely high risk and a high risk for some of the most unusual sexually transmitted diseases. What that said to me as a director of public health in the state is we're lucky it was syphilis. This could easily have been HIV or any other STD. ... Thank goodness for the syphilis because it helped us to intervene quickly in the community and potentially prevented what might have been an outbreak of HIV infection in these very young teens in this community. ...

As a public health matter, in controlling and stopping the spread of the syphilis, did the fact that the kids were having sex with each other in a kind of chaotic way make it more difficult or did it make it easier because it was contained among this one group?

This syphilis outbreak not only unmasked tremendously high risk sexual activity among teens,  it also unmasked tremendously dysfunctional families in communities where we never thought to look for this kind of dysfunction. The fact that there were so many sex partners--and in fact as we tried to monitor partners, this in fact spread way beyond simply this community--it made it much more difficult because of the actual numbers. I think what it also lit up for us was the fact that we perhaps were a bit unrealistic about the true sexual risk many of the teens in Georgia were taking. We tended to think that any sexual risk was in a much older age group.

And so it was a dual process of educating us as well about the fact that we have to initiate prevention activities and education activities at a much younger age. For example, our [sexual] behavior survey, which is a survey that CDC sponsors in our state, talks about four or more lifetime sexual partners. We had youngsters in involved in this outbreak who described 65 sex partners, which renders our survey almost comical because they weren't in any way capturing the magnitude of the risk behavior that these kids were experiencing. ...

My understanding is that there was a lot of mis-diagnosis at first.

... Many of the private sector physicians totally missed the mark, and again I think part of this has to do with the fact that it was syphilis, and that it was syphilis in an affluent community, and it just never entered their mind. Two young men with secondary syphilis were treated, one with Benadryl, which is something you give for an allergic reaction, and the other for acne. ... I think because of where we practice we often tend to wear blinders about, "in our backyard this couldn't possibly be going on." So the fact that it was syphilis escaped detection for some time simply because I think many of the private sector physicians did not even think about that as a potential diagnosis, particularly for these young, middle class affluent teens. ...

What is the disease of syphilis? How serious is this disease if left untreated?

Syphilis is a bacterial sexually transmitted disease that's been described in the medical literature for hundreds and hundreds and years. And it is easily treatable with penicillin but if gone untreated it can do tremendous damage to the body including to the heart, brain. ... Syphilis causes severe brain damage. And particularly in pregnancy it can affect the infant. Half of infants infected with congenital syphilis die, and virtually all the rest have some sort of sequelae of syphilis infection. And so it's tremendously devastating to the infant when transmitted during pregnancy. ... Syphilis in most of the United States and certainly in Georgia is largely confined to very disenfranchised communities. It's largely confined to an African American population. And so to find syphilis outside of what is now a relatively small cohort of individuals still at risk for syphilis is what brought it, I think, to our attention with such clarity.

My understanding is there was a group of kids at the hub of the syphilis epidemic ...

My understanding of the syphilis is that there was a core group of young girls. Again, making this an unusual outbreak. Not that men are always responsible for outbreaks. But again it was the behavior of the young girls and that they were interacting with two different cohorts of young men, one white, one African American. And I think what particularly alarmed me both as a public health professional but also as someone who has worked in STD for many years, was the alcohol use, but also the extremely high risk sexual activity: group sex, sometimes multiple, two on one sex or other sexual activity. All of our traditional education and intervention methods would just be rendered useless in that kind of high risk setting. And my sense from discussions with the kids and from what was reported back to me by the investigators was that in fact there was a tremendous element of peer pressure going on here. That what was driving this in part was a desire to be part of a group, to be accepted. ...

Was it your sense that in any way the girls were victims of the boys?

... It did not seem as if these teens were in any way victims ... . Much of the activity that was being carried out here was not coercive, but rather taking place because of the desire to be part of a group. It was pressure, I suppose, but more pressure to be accepted, to be part of this group of friends. To be part of something that was special. In fact, the girls who could perform even more outrageous sexual activities developed more status within this group of people. So were they victims in the traditional sense? Not at all. But were they victims of peer pressure? Yes, in the sense that they wanted to be part of this group so desperately that they continued to have high risk sexual activities simply to be accepted by this group of friends. ...

You said that you tried to sit on the story, to squash the story. How did you try to squash the story?

We didn't actually try to squash the story in the sense to keep it out of the press. But rather we didn't go in a proactive way to the press which we might do with a public health story where there was broad exposure and ongoing risk. What we knew is the only individuals at risk for disease were those sex partners of these teens, and that any kind of adverse publicity, and particularly negative publicity, might in fact discourage partners from coming forward or ... might make the teens frightened to talk to the public health investigators.

So we tried to minimize discussion of this in the community until it came forward, and then I was the one who was designated as the one to interface with the press and at that time what I emphasized to them was not the number of sex partners or the unusual sexual activity that was going on, but rather the fact that these were young teens, and all of them having access to alcohol and that it was under the influence of alcohol that these sexual activities were going on. And that we were totally amiss in not recognizing the fact that our kids had access to alcohol, could get it under age, and that this was a major substance abuse problem in many of our communities statewide. ...

One of the really important things that the public health department did in Rockdale was try to mobilize the community in an on-going way, not to flame any kind of adverse publicity but rather identify what some of the problems of these teens were and try and identify community solutions. Several of the members of the health department went out in the community, tried to work with ministers to initiate youth ministries ... , tried to mobilize community support for on-going activities to support teens. ... It was felt that there was a lot of work that we could be doing with the schools in Rockdale, with other community groups ... that could help prevent something like this from happening in the future.

Almost a year after the outbreak occurred [there was] a town meeting to bring parents in to talk about it. Local politicians, county commissioners from Rockdale were actually there to introduce the meeting, and I was brought in to talk about sexually transmitted diseases in general, what they reflect, and in particular what happened here in that outbreak. And I remember vividly, because I've never had such an audience for any talk I've ever given, any public talk. This is an audience, an auditorium full of skeptical parents and many of them were angry, feeling that somehow this was not their kids that this had happened to, or somebody else is responsible for this.

And I remember when I put up the slide that showed that interaction, the sex partners, and the partners of the partners, it looked like a ball of yarn. There was actually a gasp from the audience and this total disbelief that this could have happened in their community. And there ensued a discussion, and with me there was a minister who was involved with the youth ministry, other local public servants, the police, others, talking about how this could have happened. And it was so extraordinary to me that these parents started looking for externally who to blame. "This caused this--TV has caused that--external groups have caused this--" But few of them, none of them that I can recall, ever looked to themselves. And the minister turned to me and said, "They don't see. It's them. It's the parents. They have done this. The kids don't talk to them."

And yet what was extraordinary to me, a year after this outbreak, that here was a community in total denial about what happened ... and when confronted with the data about what happened, pointing a finger everywhere but back in the community, and certainly not back to them as having any responsibility for what went on.

Why are you so sure that it was them that were at fault?

Why am I so sure? In discussions with the teenagers, the teens described relationships with parents that were just disconnected. And in fact in discussions later with the youth ministers, they talked about these teens wanting desperately to have parental approval. Wanting their parents to just say something that they were doing that was something that was good.

... To me what was so extraordinary about this whole experience as a public health person who's worked in communities for years was that this syphilis outbreak not only unmasked tremendously high risk sexual activity among teens, but in addition it also unmasked tremendously dysfunctional families in communities where we never thought to look for this kind of dysfunction. Parents not talking to teenagers and that leading to a lot of acting out on the part of the teens. ...

In a sense these kids were forming their own family. A surrogate family.

The teens had formed their own social network, their own group, and they got approval from that group. And sadly the approval required them to perform in more and more bizarre ways--at least what we would consider to be bizarre ways--and carry out higher and higher risk activities.

Tell me about Teen Plus in Rockdale.

Independent of any of the other activities that have been going on in Rockdale, the state had initiated a special adolescent health teen pregnancy prevention program... called Teen Plus. The way the communities were identified for Teen Plus sites were those with the highest number of adolescent pregnancies. It turned out that Rockdale was not at the top of the list, but was in the second tier slated to get funding for an adolescent pregnancy prevention program.

These programs would be flexible and could include clinical services, but also could include youth development activities, mentoring, youth ministry activities, boys and girls clubs, after school programs. A wide range of activities could be supported by these funds, but they had to be connected to or at least referral needed to be available to some family planning services. I was ecstatic when I saw Rockdale on the list because this was a few years now after that original outbreak had occurred. It didn't appear that there was a lot of ongoing community involvement in adolescent health activities or youth development or support for these teens. I thought this was a wonderful way for us to follow up on that town meeting to give support to the youth ministries and also to continue to provide at last some clinical services to teens who were at high risk and already sexually active. We also know from our data, here in the state and elsewhere, that teens don't come to a health department clinic until they've been already sexually active for a year or longer. So we had no concerns that we would be ... encouraging sexual activity but rather we would be making services available to teens as they are right now through the Rockdale Health Department. ...

I was actually quite astounded at the kind of community uprising against Teen Plus that came, ... and that much of the anger of the conservative [reaction] was coming from Commissioner Randy Poynter and others. Commissioner Poynter had in fact headed up the town meeting and introduced me to the town meeting just a year or so before when I had addressed the parents about the Rockdale outbreak. And so I was flabbergasted that a year later he would take such a negative view of this potential program to bring resources to his community that had a clearly identified problem, that he had wanted to address just a few months before. I think the difference in my mind was the fact that we were coming up on a governor and lieutenant governor election, and that these teen pregnancy prevention programs became fodder for that election. ... As part of this election, these programs became so politicized, and in efforts to show how strong a candidate's family values were. they began to demonize [not only] all of these programs but many of the individuals involved in public health. ...

What did they say?

They were misrepresenting what programs did. ... They said that they were abortion programs. That these were abortion clinics. That we were encouraging kids to have sexual activity. That we were pulling kids out of schools to encourage them to have sex and then give them abortion pills when they became pregnant. And again what was so astounding to me is that this is going on in the community where just a few years before we had a syphilis outbreak with teens, on their own--without anybody's encouragement--carrying out activities that were just to me unimaginable. And yet the denial that was going on in that community by ... political leaders who just a year earlier had pledged to support public health and intervening was very disturbing to me. ...

It was almosas if there was a collective amnesia about what happened. The parents that were involved with these kids were nowhere to be found. I think that much of the community memory of this was lost, and all the only voices that were heard were these shrill dissonant voices that didn't reflect the reality of either our programs or the reality of what was going on among teens in that community. And there was just a real fear that if you spoke out that you would be labeled in an adverse way that would affect your impact or ability to work in the community. ... And so to me the ultimate sadness is here's a community that desperately needed it, here are teens who desperately needed these programs of support and mentoring and the shoring up of that bond between parent and family and teen, and it was turned into such a political issue these funds of support was turned away. ...

But don't the opponents of Teen Plus have a point? You've just gone through a syphilis epidemic. You know that teens are doing unbelievably promiscuous things. Having so many partners. And all they're saying is don't teach them sex. Don't give them condoms. Teach them abstinence. What's wrong with that?

There's nothing wrong with teaching abstinence. ... In fact this very program for teens was an abstinence based program. We're reinforcing importance of abstinence, the most effective way not only to prevent pregnancy but to reduce the risk for other diseases. But most importantly, those two factors that are the most important influences on a child's life are parents and teachers, and so, in saying that, the most effective programs to reduce adolescent pregnancy prevention aren't giving condoms or "just say no" but in fact are programs that give a kid a sense of the future.

The word is "youth development" programs. In fact what they do is give kids a sense of self-esteem, reinforce the fact that there is something beyond the immediate. There is something to wait for. There is something to look forward to. And so many teens that we see who do become pregnant become pregnant not because they didn't know about condoms or know how to use them or didn't have access to birth control pills, but rather having a baby in their mind was the most significant accomplishment they would ever have in their life. And to me that's a problem much bigger than public health. And that's why our programs to reduce teen pregnancy had to, by definition, involve parents, involve families, involve the school, involve churches, because it isn't just a question of handing out condoms or just saying no. It's working with kids to give them a sense of who they are ... and to build that sense of self and that sense of self-esteem that can allow them to go on to be productive healthy adults.

What lesson or lessons do you take out of this whole strange syphilis story of Rockdale?

I guess a couple of things. One is just because something like this happens in a community, and you try very hard to educate a community about the implications of such an event that won't necessarily lead to a change in behavior. A single event will not educate a community. ... For me as well, someone who's been in public health and has worked with adolescents for many years, I think the other thing it taught me is just how deep-seated a lot of the feelings are in a community about sexuality, and particularly adolescent sexuality, and that this just opened up this incredible emotion in this community, the feelings of morality ... that incredible tension that's felt when public health has to dance between what is appropriate public policy versus private morality, and how do you bridge that. There aren't clear cut answers to that. ...

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