The need for this prevention outreach to PLWH/As came out of a report on a survey of a representative sample from gatherings, support groups and case management clients throughout Michigan - 35 counties, the majority in metro Detroit. The report, "Michigan Persons Living with HIV/AIDS Needs Assessment Results and Recommended Intervention and Evaluation Activities," was produced by MDCH-HAPIS from the survey designed and conducted in collaboration with the Michigan Persons Living with HIV/AIDS Needs Task Force.

News: This needs assessment uncovered some rather startling statistics on risk behavior among PLWH/As, and also the disclosure - or rather lack of disclosure - of their HIV status to their sex partners. The report stated that 43% of those surveyed indicated having protected sex without disclosing to their partners, and 36% reported unprotected oral, anal or vaginal sex without disclosure. Also, 36% reported avoiding sex or shutting down sexually. So this pilot program is addressing both the need for communication skills as well as the need for counseling on the fear of intimate relationships?

Peterson: Actually, the program is designed to look a little deeper than fear and skills. Those statistics looked at alone can be alarming and enlightening. What we can definitely say is there are issues to disclosure. There are issues that are deeper than just skills and learned behavior around safer sex for PWAs. That's important because until recently, that's been the focus. If there have been any prevention activities for people living with HIV and AIDS, they have been focused on access to condoms. The assumption has been if we give them condoms, they'll use them.

What this survey showed us is, there are deep psychosocial issues around safer sex, intimacy, how we express ourselves sexually, and all the other co-factors, mental health, substance abuse. And these are all one big complex of problems that when talking about prevention for positives, have to be addressed. It's not as simple as giving people condoms.

There have been some studies that show that just knowledge of serostatus - in the beginning stages of dealing with that issue - is enough to change behavior. And it does change behavior to some extent. But I don't think it does anything to address those deeper psychosocial issues.

News: This new model program is based on research as well as some programs that have been proven to work.

Peterson: One program is in California; one is in New York; and we are looking at another one out of Wisconsin. There are some programs up and running dealing with specific populations, for example couples, or certain issues - except for the newest one out of Wisconsin, that is looking at prevention the same way as Michigan. It has the, 'Let's see all of the issues and then sort of quantify those, by what people say is the most important, and by giving them the opportunity to tell us what they think needs to be worked on first.'

We are going in with very few assumptions. And letting the participating clients and the data tell us which way to go.

News: The program is three pronged. There is outreach, the individual client-centered risk reduction and referral sessions…And the group level seminars. What kinds of topics are you going to include in the seminars?

Peterson: If you look at the multi-layer approach to this, it's sort of like a funnel that starts off at the top with a group social activity where we involve people to discuss social issues. And then people will select themselves into a group, if they choose to. It's an educational group that starts with the premise of some of the issues that were brought up from the surveys. But then also checks with the group participants to make sure those are some of their issues and to look at other issues that they bring up.

Group educational support has been around; it's been proven effective for a lot of different things in behavior change. And one of the issues highlighted in the survey is that positive people need to feel that they are part of a community; that they have the opportunity to socialize with each other and to learn with each other. So that is what this group is set up to do, to provide educational workshops about the specific issues that were highlighted, like disclosure, like intimacy, like mental health and substance use - all of those key psychosocial and social issues that were either challengers or facilitators to behavior changes.

We won't be sure until we start the program what people will say they need more work on. We will have a set curriculum across the difference agencies that we work with to make sure we get the best possible results from a research angle on this.

News: When you get into the one-on-one, are the individuals who will be doing the counseling trained as social workers, as therapists, as someone who can get into those deeper issues?

Peterson: Yea, as the funnel goes down from social to group educational, some of those people will then select into individual counseling to look at those specific areas. What we are looking at is the criteria for facilitators of that group. One of the things the PWAs said in the survey is that they want it to be peer led. So as much as possible, we're going to work on having peers facilitate that process.

We're planning on using the client-centered counseling method taught by MDCH through their counseling and testing training. We're looking at other criteria that we need. This isn't going to be in-depth psychotherapy. We do need is to make sure that we have counselors who know how to make good referrals. And that's part of this program too, building up that referral network around those clients. In some cases, in some areas, we have a wonderful referral network. Where, whatever you need we pretty much have a provider that's available or one we can access. In some areas we don't have that. So part of the work of this program is going to be to try to find those providers as needed.

News: How many agencies participating are in the model?

Peterson: We have four right now. As soon as we can get some administrative things in order we will be able to go ahead. They are Lansing Area AIDS Network (LAAN), HIV/AIDS Resource Center (HARC) in Ann Arbor, Community Health Awareness Group (CHAG) in Detroit, and Men of Color in Detroit. That gives us a good cross-section of PWAs, demographically. However, the behavioral group that we are working with in all of those agencies will be men who have sex with men (MSM).

News: You've also participated in some research on a national level and are working with CDC.

Some of it was. The idea of working with positives, I think was here. They grew on two different tracks at the same time in Michigan. Some of us knew about the CDC SAFE initiative, which is a sero-status approach to HIV prevention. Some of us, to be quite honest find those programs lacking. At the same time that these programs were going on, people at the state health department, active PWAs, and some prevention outreach workers were talking about the same thing in Michigan, the need to do HIV prevention with HIV positive people.

It's very important to follow the origins of advocacy for this effort in Michigan. If this initiative had come to us solely from public health, the CDC, HRSA, or MDCH, think of the possible ramifications for our discourse related to stigma, judgment and targeting PLWH/A's as vectors of disease.

In Michigan, PLWH/A's have taken responsibility for and leadership on this issue. Because our effort has been developed with PLWH/A input and direction from the start, I'm sure that Michigan will develop a more comprehensive and compassionate method of addressing the HIV prevention issues for PLWH/A's.

The biggest difference with SAFE and PHIPP is that to a large extent they're programs that were designed to impact on people who didn't know their status or were HIV negative, those kind of outreach interventions, and then applied them to people who were HIV positive.

It was really clear from some of the discussions with The Task Force and in development of the surveys that we gave, that you don't get the same kind of information from people who don't know their status, who are just going in for counseling and testing, or being touched by those kinds of interventions that you do when you are dealing long term with people who are positive.

So we were actually getting more information about psychosocial issues, more information about the underlying reasons why people do or don't change behavior. We were learning more from positives than we were from negatives. So I think our program in Michigan is designed based on that, more than just taking something that exists and trying to apply it to a positive population.

What I learned from the CDC and the AED best practices? To anyone who knows me, they will not be surprised, and this is my own take on this… In my work in D.C., it was really clear to me that these programs came out quickly. They were enacted quickly, which was good. However I don't think that they had the foundation and research study for what goes on for people with HIV. I don't think that using interventions designed for HIV negative people, or people who do not know their status, is the best plan of attack here.

News: And this is coming from the meeting just this June, and hearing what is going on around the country?

Yeah. I do see glimmers of things that - based on what we have learned in Michigan, will wind up being part of what we do. But I can't say where I've seen one of those CDC programs work well enough for our population for us to just pick up and place in Michigan and have the best program that we could have. And that's the idea behind this model intervention, to come up with the best practices for Michigan. We know that we are going make a lot of the mistakes, and do a lot of the learning, so that as other agencies get involved with this, they can use everything that we've learned. And they don't have to use a one-size fits all program.

So for my part of this, I really have a critical eye to what is coming out of CDC, what is coming out of other states. And their own development of programs; looking at that always with the balance of, does this match what our PWAs are saying; does this match what our agencies are saying?

News: What is your measurement of success? How are you going to measure that? What are you looking to achieve?

Peterson: That's a wonderful question for Maria Lapinski-LaFave. Maria is our evaluator. And that's really important, because we have Liisa Randall at the state, monitoring this program. We have Maria Lapinski-LaFave monitoring this program and looking at evaluation, from the beginning of the project.

To put it simply, what we would measure is behavior change among HIV positive people, and their ability to change behaviors to reduce the spread of HIV. Another thing would be to reduce possible sexually transmitted diseases for HIV positives. Those are our goals in a nutshell.

Our objectives from there are going to be in coordination with each intervention. And each intervention will be measured and compared. And there will be cross-site evaluation from agency to agency, with us making sure that, as far as we can, we are providing the interventions the same across the board, so they will be replicatable at each agency.

Yea, our big goal is to reduce the transmission, and increase the safety for HIV positives.

News: You mentioned that a lot of programs previously have emphasized condom use. Does this program venture into the territory of reducing partners as well?

Peterson: Like I said skills will be important and skills will be part of all of the interventions. But what we know about skills is that it's best taught repeatedly; it's best taught through different methods of teaching; it's best taught when you can do one-on-one follow-up. So the skills that we are talking about, whether they be condom use or limiting partners have to carry the weight of knowing someone's status, knowing all of those issues that underlie that, and then working on those skills that work for that individual.

So just a blanket skills workshop, from the research I have looked at, kind-of misses the point. When we want to change behavior, when you come down to it, it's an individual thing.

News: So, the client-centered approach, is that based on a harm reduction model?

Peterson: Harm reduction is part of it. The philosophy of any positive change, any incremental change, towards an intended goal is good is supported and fostered is definitely part of it. That's part of client-centered counseling the way it's taught in Michigan through the CDC by MDCH training units. But that's a huge issue too because you have to talk about substance abuse and its ability to challenge people's decisions around safer sex, and people's ability around safer sex and direct transmissions through drug use. So yeah, harm reduction is going to be a core component.

News: What's your take on this so far? You've done the research stage and you're just about to embark on working out the model. Do you feel good about what you've developed?

Peterson: I think we've gotten to the point where I feel like it's common sense, which makes me feel comfortable, because I'm not a PhD. I'm an outreach worker; I'm a counselor; I'm a PWA advocate. So, sometimes things have to be - I don't want to say 'dumbed down' for me - but I've got to feel that common sense connection. I think we've covered out bases well enough that yeah we're to the point where we need to start. We're going to learn more, and I count on that. I don't think in any way we are ready to just start, go and have people come out the other end achieving the goal that we had set up. I know behavior change doesn't work that way and I know prevention education doesn't work that way. So, I am eager to find out what we learn beyond what we already know. That actually excites me. I think the stuff that we are going to learn is going to help us create better programs that are more focused on what is happening with that individual. I think that's the unique thing about looking at HIV prevention this way. We can take the entire world of knowledge and all of the major issues and distill them down and keep working and seeing where they impact the individual.

News: What kind of a time line do you have on this? When do you expect to get some outcome evaluation?

Peterson: That's a great question for Liisa Randall. My goal has always been that we have a finished document that stands up to protocol; that is shown to be good research, that has good outcomes - not meaning outcomes that I want, but showing that we did the program correctly - ready for people to learn from prior to the next prevention RFP, in a year and a half.

That's always been my goal. So people have time to look at it; and they have time to ask questions and get all the information that they need, so that as they go to enact these programs in their agencies, they do the best program that they can.

So it's got statewide implications, which it should.

News: Is there anything you want to add?

Peterson: The Theory of Reasoned Action is the theory behind the entire program. Maria Lapinski-LaFave is our expert on that. It basically talks about how as a person decides to make a behavior change there are a lot of outside factors that influence that. It has been proved effective. It's one of the best theories we could use when we have so many outlying issues. If all we had to deal with was disclosure issues and intimacy with MSMs at four different sites, we might use a different theory. But because we have so many things that interact with each other, individual issues, issues with partners, issues with society, issues with the HIV positive community. We have just an ever-widening circle that this theory speaks to that, and kind of gives us a blueprint to work from.

That's the theory behind the entire program. Now the social group level intervention and individual level interventions all have different theories that there are based on. And we'll be true to those, but the idea for the entire program comes from the Theory of Reasoned Action - which is all brand new to an HIV outreach worker.

We have to remember that this is not an easy subject to deal with. It has so many personal and social aspects to it, yet the premise of why we need to do this work is so simple. To get HIV you have to get it from someone who has it. We also know though our surveys, and other methods of collecting information from PWAs, there are real big issues around transmission. Transmitting it from us who know to other people. There are all of those psychosocial issues, legal issues - those moral and ethical issues around 'How do I live my life as a PWA and experience it the way I want to experience it and not negatively impact by transmitting HIV.'

We have an obligation to go beyond what is only cost effective to saying 'We have to get a hedge on this population first.' Let's do something with people that know, at the same time we're doing all the other stuff. Will special funding be carved out to do this kind of work? That may be because it costs more to do this kind of work. It's labor intensive. It takes more trained providers. It takes more long-term contact with clients than just providing a workshop or passing out condoms - or street outreach isn't the answer here.

What makes good street outreach? Its consistent, long term and develops relationships. That's more true for people who are positive. With positive people we have access to them; they have access to us. They come in through care, through infectious disease; they come in through different services. And to be able to deal with those prevention issues - through their network - is going to take a lot. It's going to take a lot of education on the provider end, and it's going to take, like I said, a higher quality of services. It's going to cost more money.

In the end does it become more cost effective? I think by proving that somebody has changed his behavior, somebody who was one of those people in our survey who said, 'Yes, I have a history of having unprotected sex and not disclosing to my partners.' If we can show that one person says, 'You know what, I take care of things now' - regardless of what skill they chose - that they decrease that risk, I think that makes it cost effective.

News: Oh yea, when you turn that around into the care that you are not paying, for even five individuals.

Peterson: People who are positive do not want to infect others. For those who know that they did infect others, that's a heavy burden to bear. That can impact on them psychologically. It can impact on them medically, physically, and emotionally.

And that's another thing to wrestle with, to make sure people don't have to live with that. And for those that do, to get the help that they can. People don't want to infect somebody else; and many people are living with the knowledge that they did.

So, start with people who are positive. Carve out prevention dollars to address that much like you would any high-risk population. When it comes down to it, somebody who is engaging in activities that could transmit HIV from somebody who knows they're positive - you don't get any higher risk than that.

Mark Peterson has been an active member of Michigan's Persons Living With HIV/AIDS Task Force for about 2 years and has had direct ties with The Task Force leadership for the past four years. He did outreach work for four years, primarily with injection drug users and female sex workers. He has worked and volunteered for several agencies in the metro Detroit area including ACSEM and CHOW; and he worked on the RARE project. Peterson said his work as both a PWA advocate and an outreach worker has allowed him to see both sides of HIV/AIDS, care and prevention.

"I've been there while it was happening. It prepared me for this project…It was always a no-brainer for me, that you had to keep doing prevention with people who were positive."