LifeGuide [Treatment Horizons]
Based in San Diego, a prevention model aims to reach everyone
Everybody should be tested for HIV. That message is the basis for Lead the Way, a new campaign and research study that seeks to address the fact that many adults who are HIV-positive do not know their serostatus and are not pursuing HIV antibody testing on their own.
Created and led by Susan Little, MD, Professor of Medicine, Department of Medicine, Division of Infectious Diseases, at the University of California, San Diego (UCSD), the UCSD AntiViral Research Center-sponsored Lead the Way is a comprehensive “test and treat” model of HIV prevention. With vaccines still navigating, slowly, the development stages, the multi-year pilot study’s prevention model aims to significantly reduce the spread of HIV by empowering all individuals within a community to take charge of their HIV health.
Knowing one’s serostatus is a key tool in HIV prevention, reminds Dr. Susan Little. “There’s good data to suggest that knowing your status significantly reduces risk behavior that could lead to transmission in the majority of HIV-infected people. The problem is that a lot of people don’t know their status, so the goal was to increase awareness of serostatus and simultaneously try to address the fact that, in the United States, of the estimated 1.2 million people who are infected with HIV, about twenty percent of those don’t know they’re infected,” she says. “The current HIV testing and screening recommendations have not made significant inroads in identifying those twenty percent. The ultimate goal: to reduce HIV risk among those who are found to be HIV-infected.”
Lead the Way is focusing its efforts within the boundaries of two San Diego zip codes: 92103 and 92104. The two zip codes cover neighborhoods like University Heights, Mission Hills, Hillcrest, and North Park. Explaining why these two zip codes were chosen, aside from limits on funding preventing the research to expand geographically, Dr. Little responds: “The single biggest reason was that we wanted a community that was heavily and enthusiastically engaged in HIV care, treatment, and prevention because the whole concept of going door-to-door to offer HIV testing might not be well received by just everyone. Think about the number of solicitors who come to your door and how you run and hide and turn the lights off! The goal was to try to find a community that would be more receptive to somebody trying to spread this message and actually collect data in a door-to-door fashion.” That is, even though Hillcrest, for example, is a gay-identified neighborhood in San Diego, it is more importantly an HIV-conscious and activist neighborhood, says Dr. Little. Altogether, the neighborhoods represent a diverse array of ethnic, gender and sexual identities.
To expand the radius of risk from traditional categories of individuals to the public at large, the Lead the Way media campaign features sixteen role models who are prominent in the community as a way to represent the campaign’s message. Explains Little: “One of the goals of this campaign is to direct the message at everyone. So one of the first challenges of our media approach was, ‘How do you target everyone?’ And the response that we came up with was to use the idea of role models to educate people that there isn’t a profile for a person who
is at risk for HIV infection. We tried to identify people from all walks of life—athletes, businesspeople, religious figures, every sort of category that we could think of that were, frankly, in no way, shape or form visibly identifiable as someone at risk for HIV….” In other words, individuals might potentially identify with someone whom they perceive to be at no risk for HIV infection and, at the same time, feel assured that, if the community leaders could be tested, they could, too.
Throughout the year, off-site, non-risk-based testing is available, and testing sites are set up in public venues, like farmer’s markets and community fairs, but the unique difference in this model is that Lead the Way also goes door-to-door to offer in-home testing. A team of HIV testers have been going out into the community, hoping to move “point of care” HIV testing inside the front door. If the answer to the question posed—“Would you or wouldn’t you take an HIV test?”—is affirmative, the testers offer a free-of-charge finger-prick rapid test. If the answer is not affirmative, a brief survey is offered. At the end of the day the team seeks to collect data about the barriers and motivators surrounding individuals’ approaches to testing independent of whether those individuals feel they are at risk, as well as, of course, usher those who are positive into care. A door-to-door approach will also help detect early infections, when people are most infectious, and, if those infected seek treatment and/or practice prevention methods, the risk of transmission may be minimized.
Dr. Little explains the thinking behind the alternative approach to testing: “The ones who come to us [for testing] are presumably people who are already aware of some risk or engaged in the public-health campaigns that simply raise awareness about the need to know your status. Those who are unaware or don’t want to know or don’t believe that they are at risk are presumably the people who are not going to come to us. [By] going door-to-door and doing testing in a very strategic manner, we can adequately represent and know what proportion of the population we have sampled.”
The team has met some resistance going to door-to-door. “While people have been quite pleasant and willing to receive door-to-door visits by the testers, I would say they have not been particularly willing to participate in testing,” says Dr. Little. “The majority, meaning greater than ninety percent of people who are approached to have rapid testing done at home, are declining the opportunity to get tested on the spot.” Survey results, however, are more abundant—and this data is essential to discovering why “that proportion of the population is not engaging in testing.”
Regarding the survey feedback the research team has collected so far, Dr. Little says, “Not surprisingly, those who come into test have very few barriers in regards to testing, and many of them have been tested before. For those who admit to or acknowledge barriers to testing, a very significant one is, ‘I don’t believe I’m at risk,’ and also the feeling that they are concerned about confidentiality—both confidentiality within the medical field, that his or her HIV test results will remain private, and, then, second, and in equal amounts, are concerns about confidentiality [in regards to] their family members. They don’t want to be tested because they’re afraid family and friends would find out. I think that says a lot about the status of HIV stigma still in our communities today—one of the very significant reasons that people are not testing is that they are concerned that, frankly, the people that they love will find out. And I wish it were exactly the opposite—that they would be able to turn to those people for support and reassurance,” shares Dr. Little.
Since last April, when Lead the Way was launched, the team has screened an average of 350 individuals per month and fourteen individuals have been identified as HIV-positive. Initial numbers suggest that the general HIV prevalence may be much higher than the national estimate of 0.5 percent, bolstering the increasingly popular idea that HIV testing need not be constrained by a risk-category paradigm.
One of the long-term goals of Lead the Way, one which is shared with most every other prevention awareness effort, is the normalizing of getting tested for HIV. Says Little: “There is no group of people that should be the sole focus of HIV testing efforts. HIV testing is part of the U.S. health-service guidelines for all adults and adolescents—everyone over the age of thirteen—at least once, and then repeat testing is somewhat guided by risk.…Very few people, including many providers, are aware of those recommendations or are following through with those recommendations.”
She adds: “I want people to be able to say, ‘I tested for HIV,’ and not have people look at you funny and go, ‘Why? What did you do?’” Getting a test for HIV needs to become as routine as getting a Pap smear, she says. “Everyone needs an HIV test and that’s what we’re trying to get people to understand.”
Physican-based counseling is integral to this global effort of normalizing HIV testing. “Part of the hope with this program is to direct people to our Lead the Way campaign, but if the collateral outcome is that people go to their providers or go to other testing sites in the area, that’s fine! The goal is that we want people to test. Ideally, we’d like to capture as much of the data as we can so that we know what the barriers and motivators are, but we really do want any form of testing so we can raise awareness that it is needed. [In fact] one of our questions in the survey certainly identifies the fact that one of the barriers was that people didn’t test because their physicians hadn’t told them to.”
In the future, Lead the Way would like to increase the number of zip codes, expanding its testing and survey pool. Adds Little: “We’re also trying to recruit and identify people who are already HIV-infected and know they are HIV-infected. The reason for that is, in addition to raising awareness among people who don’t know their status, we’re trying to get an estimate of how many people are infected in the same community. That is, it’s a little bit difficult to get an accurate estimate of how people don’t know their status when you don’t know what the prevalence—the frequency—of HIV is in that community.
“The United States as a country, and certainly San Diego is no exception, does not have the resources to collect accurate population-based estimates of HIV prevalence. There are very nice mathematical models that are based in real data, but it’s not possible to look up accurate measurements of prevalence in most communities. So, we’re trying to measure how many people in this community are HIV-infected. We’re asking for people who know their status to get a confirmatory test and then give us a bit more information on a more extensive survey where we do ask about risk.”
For more information about the campaign, log on to www.leadthewaysd.com.
Chael Needle wrote about MucoCept, a microbicide candidate, in the September issue.