Youth Activist Brings HIV Prevention to an Urban Children's Hospital

An Interview With Kai Chandler

Contributing Editor

My name is Kai Chandler. I'm from the Children's Hospital of Philadelphia [CHOP], The Adolescent Initiative. I am the program coordinator for our HIV counseling and testing program and I also provide wellness counseling in our HIV specialty clinic with HIV-infected youth.

Programs that are actually working -- I will take a minute to speak just broadly about what's going on in Philadelphia and the HIV prevention community, which I think is just really fantastic. Throughout Philadelphia, we've embraced the community collaboration model. We work in collaboration with each other and I think there really is a sentiment that we all have the same vision to try to end the spread of HIV here in Philadelphia.

Another thing that's unique about our programs here in Philly is that I think that they're really community based and community run. A lot of these agencies, when you go in and look to see who's doing the work, who's providing the services, they look a lot like the same people that are receiving those services, which I think is really, really important.

In Philadelphia, the spirit of political activism and grass roots goes back decades and centuries. I think that a lot of the people that are working HIV prevention in Philadelphia share that history and bring that history to bear when they're doing their work in these communities. I think that that's something that's really, really fantastic and something that works.

Bringing that specifically back to HIV prevention, how do you see that working in terms of individual organizations?

Well, I would say that what's going on is something a little bit kind of exciting in terms of strategy. The idea is for everyone do what they do best. So if what you do best is reaching out to MSM [men who have sex with men] youth, 14 to 18, that are out of school, that are Latino and living in North Philly, then that's what you should do. You should let everyone else around you know what you need to most successfully and effectively get that done. I think that that kind of helps us all focus on what we can get done in our unique areas and neighborhoods with our own populations that we work with.

Tell me a little bit about your program.

CHOP is the Children's Hospital of Philadelphia. The program that I work with is the Adolescent Initiative. We're a program within CHOP. What we do is we provide comprehensive health education services throughout the CHOP network -- in almost all of our clinics, which are located in the neighborhoods, our satellite clinics, and also in the hospital itself. In that context, we provide risk-reduction counseling, counseling around family planning services, safer sex, partner negotiation communication, STD [sexually transmitted disease] counseling, education, and of course, rapid HIV testing and confirmatory testing.

Additionally, at Children's Hospital we have an HIV specialty clinic where we actually link any new HIV-positive people that we identify directly into medical care, which again is really, really important because we know that there's a gap there where sometimes people can get lost along the way -- in between being diagnosed and actually receiving care.

We go out to the primary care centers and try to really implement the CDC's [U.S. Centers for Disease Control and Prevention] recommendation to make routine HIV testing just a part of your clinical experience.

You go into your clinic. You have a physical for school. Your doctor signs off on a form. You meet with a health educator and they get you HIV tested. Making it that normal and comfortable for youth, so that we can kind of get those positive habits happening early so then, as they grow older and move out of adolescence, routine testing and HIV education is just there. It's already been programmed.

That seems unusual to be doing it in a pediatric hospital environment.

HIV testing can be a very difficult sell in a pediatric environment, particularly in a hospital, the reason being that overwhelmingly the care is for babies and children. So a lot of the dialogue and discussion's around childhood, and innocence, and the purity that somehow children invoke. So the challenge became saying, well, yes, babies are pretty, but they grow up to have sex -- [laughs] and to potentially expose themselves to HIV and other sexually transmitted infections. So then how do we reach out to youth at any age really, and prepare them for the responsibility of becoming sexually active or being a sexual being?

That was definitely one of the challenges -- to kind of insert into the dialogue about pediatric medicine this discussion about this epidemic that's happening all around us, then saying, how do we bring that to bear in our clinics that work with children, but also work with adolescents? So I think that was the unique challenge and that's what we've, I think, been pretty effective in doing and accomplishing.

How did you do it?

How did we do it? We did it by being very personable, first and foremost. I would say that we did it by finding the best possible way to package our services given the environment that we were in.

Working in a hospital is different from working at an AIDS service organization or a community-based service organization where the drive is for testing and everyone's on the same page and we all feel like there's this obvious plan that we should follow to be effective. I think that working in a hospital, especially a pediatric hospital, can throw some of that to the wind. You got to start over and figure out, well, what's going to work here, especially because this isn't something that's being done everywhere?

What we did a lot was finding out the right way to kind of package our services, not only to patients, but also to providers? That it's a worthwhile service, that it's something that they should invest in and encourage their patients to follow up with?

"We want to start talking about sexual health with our youth. We want to talk about healthy relationships. We want to talk about partner negotiation and communication, which is so, so important when we know that intimate partner violence between youth is just as common as between adults."

I think that what we did principally was that we talked about sexual health. We started out by talking about not HIV, not hepatitis, not chlamydia, not buzzword STDs, but by saying, we want to start talking about sexual health with our youth. We want to talk about healthy relationships. We want to talk about partner negotiation and communication, which is so, so important when we know that intimate partner violence between youth is just as common as between adults.

We kind of started there by saying, can we talk to our youth about healthy relationships? Can we talk to them about safer sex if they're having sex -- or if they want to -- knowing what it is? Then saying, we also want to talk about family planning. We also want to talk about contraceptives and birth control, focusing at the very center of education -- education being the most critical thing, and HIV testing being secondary, really.

The thing that we wanted most at the end of the day was for someone to leave knowing more about their risk, and I think that that ended up being the selling point. What we really want is for someone 14 to 18 to learn something new about their body and how to take care of it that they didn't know before. I think that that's really how we did it.

Why do you think it's particularly important to work with youth and kids, really young folks, around HIV prevention and HIV-related issues?

I would say because Black and Latino youth are dying. We are dying. We are dying on the streets. We are dying in our homes. We are dying in hospitals. We are dying without the medical care that we need. I think that the youth are really the first front on which we can fight the war against HIV. I think that if you wait until someone's 25 or 30, then say, "Well I want to broach this conversation with you about sexual health. Have you ever thought about your sexual health before, and what that means?" Then, you're clearly starting at a disadvantage.

You're clearly starting with someone that's had enough life to live to know that they might have some behaviors that they've already really gotten used to having that are already programmed and set. You have to do all the more work to get them to talk about their risk or to even see their risk.

"I really, really believe that working with youth is the front lines. I think that it's our first step to any long-term, cohesive, comprehensive strategy to end AIDS."

I really, really believe that working with youth is the front lines. I think that it's our first step to any long-term, cohesive, comprehensive strategy to end AIDS.

If you could implement any program or take any action in terms of the fight against HIV, what would you do? What program would you implement?

What would I do? That is a very, very difficult question. I would start out by saying what I think is one of the strengths of AIDS activism in America, which is that a lot of these current, contemporary nonprofit AIDS services organizations developed from activist groups, from grassroots efforts to really confront the epidemic in communities across the United States. I think that the agencies that we're seeing now those were our ancestors -- they're our forebears.

And I think that what happened in this transition from being this community organizing group into being this nonprofit tax-exempt entity is that it's shed a lot of the grassroots community activism -- honestly a lot of the radicalism -- that went around some of the really early organizing against AIDS.

If I could create this agency from air, from nothing, I would say that it would be an agency whose primary vision and goal would be to work itself out of existence.

Part of what happens with nonprofits is that they start to exist just to survive, to continue. Not to say that their goals aren't worthy in and of themselves. But a lot of grassroots organizing models, the goal is to complete the mission, not to maintain the mission, if you can see the distinction I'm drawing.

If I could create an agency, it would, of course, be youth-led and youth-run. It would have a political education piece, which I think a lot of nonprofits are missing.

There's this drive to get our youth tested. There's this drive to get them to know about their risk, but there isn't this drive to educate them about the history of AIDS activism, or the need for communities to understand how to mobilize for themselves.

This political education piece would be really critical, especially because youth would eventually take over or redefine whatever vision was started by me or whoever would begin this agency, and hopefully take it to new levels, and to new places.

I think that there's this issue with being a youth-led agency where really the only people that are on staff are adults. And kind of hopefully creating a kind of agency or really an environment where youth are encouraged to grow to a point where they take over our work, where we hand it off, where we pass the torch, and not just in a rhetorical way, in a literal way. I think that's missing in a lot of different agencies. That would be something that I'd try to bring if given the opportunity.

Why do you think it's important to have the organization be youth-run and youth-led in terms of the organization working against HIV?

I would say that the first answer is the most obvious one, which is that we're most receptive to our peers. A lot of the evidence-based interventions coming out of the CDC show that peer-led outreach -- HIV counseling involving peers from communities or from that population -- is very successful.

I think that in terms of an agency, which is what you're asking, it's much broader. I think that youth are very rarely asked to participate in the decisions that will affect their lives in the course of history in this country. Do I think that that's a problem? Absolutely. Absolutely.

And I also think that youth, when they're given the tools and the skills, can make the really, really critical decisions that adults do all the time.

Youth have insight that we need. They have experiences that are meaningful, that need to be brought to the table. They can make decisions about their lives and about their communities that probably other people can't.

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Kai Chandler

Kai Chandler