A Link in the Chain
Test, Link, Care -- A Community Partnership
Roughly sixty people are seated around tables in a meeting room at the Family Life and Conference Center in Harlem. It is early June, and they are listening intently as Reggie Miller, who is the Director of Education and Outreach at Harlem Congregations for Community Improvement, explains New York State's new names reporting and partner notification regulations, which went into effect June 1. Their questions are pointed and probing: How far back into a person's history will the Department of Health probe to find the names of possible partners? Will people's names be given to their contacts without consent? How can people protect themselves against violence on the part of past or current sexual or needle-sharing partners?
The answers are important to the people in this room because they are on the front lines. They are peer educators -- "the foot soldiers," in the words of one peer educator, William Lilly -- in a new pilot program aimed at helping people learn their HIV status, then linking those who are positive with appropriate services, including medical care.
TLC's testing-to-treatment strategy is based on saturating a relatively small geographic area for a period of weeks, allowing outreach workers -- those peer educators -- an opportunity to become known to people on the streets and in the parks. The idea is to establish a one-on-one relationship of trust, so that people feel comfortable visiting the mobile van to be tested. Incentives and follow-up strategies are used to ensure that those who are tested come back to get their results. Then the "Link" part of Test, Link, Care comes into play, as those who test positive are brought together with medical and other service providers.
The Birth of TLC"TLC started out at a table," says Deborah Levine, Vice President of Health and Wellness Strategies at Harlem Congregations for Community Improvement and a driving force behind the program, "at a conversation about the need for our community members to have access to testing, and getting to the folks who did not necessarily think that they were at risk."
The roots of TLC can be found in a November 1999 New York City AIDS Awareness Study. The study itself was conducted in the face of the alarming and disproportionate impact of the epidemic in communities of color. The statistics have become familiar: One in fifty African-American men is HIV-positive. AIDS is the number one killer of African-American men between the ages of 25 and 44. And this is at a time when infection rates among some other populations are actually starting to decrease.
The Awareness Study confirmed what was pretty much accepted as fact -- that the message about HIV and AIDS, about prevention and treatment, just wasn't getting through in communities of color. While the New Yorkers surveyed believed HIV/AIDS to be the city's number one health problem, and while more than half of them said they know one or more people who are living with HIV or AIDS or who have died as a result of their infection, they profoundly underestimated the epidemic's impact in their own backyards. About half of those surveyed believed that there were no more than 100 people living with HIV in their neighborhoods; in fact, an average of 3,200 HIV-positive individuals live in each of the neighborhoods surrounding the city's 41 major hospitals.
It was the second part of the survey, however, that served as the inspiration for Test, Link, Care. Questions about people's willingness to use free health screenings, and barriers to HIV testing and treatment, were disturbing. Seventy percent of the people surveyed said that they had never used free health screenings, and over half said they would not use them. Why? The overwhelming reason, according to the survey, is inconvenience. The health service facilities that offered screenings simply were not open at the hours when people could use them. They were not near people's homes or convenient to public transportation. Childcare was unavailable. This pointed the way, according to Levine. "People were telling us if free childcare, better hours, and convenient public transportation were made available, they would be more apt to utilize the services of screening centers and clinics."
Also sitting at that table were Ravinia Hayes-Crozier, Executive Director of the Harlem Directors Group, and Jill Silverman, a Community Liaison Specialist from Bristol-Myers Squibb. According to Silverman, "We were sitting down talking about what we can do for the community that will be visible and will be positive and will address the ever-increasing rate of HIV in this Harlem community. And we talked about the resources that were already there. The Harlem Directors Group is a consortium of the different community-based organizations in this area. We figured we'd work among them, and incorporate the Department of Health because they have the mobile testing van. We figured we'd have to bring this to the people instead of waiting for people to come to us."
Getting people to be tested, though, was only the first step. Silverman continues: "Then we needed medical referral sites. North General had just renovated the whole hospital, so we figured that was a great site within the community. We also chose a smaller clinic, Community Healthcare Network's Helen B. Atkinson Clinic, because some people are more comfortable in a smaller setting."
The foundation of TLC was seen as the Harlem community itself, both its existing community-based service organizations and its people. And so TLC was formed as a collaborative effort that relied heavily on the involvement of peers. "We believed in using people that are infected and affected to talk about where they were when they were tested, and how that process works," says Levine. "People that are from this community are about this community, and so people know people here. And we were fortunate that Bristol-Myers Squibb agreed to this model." And, Levine continues, the key element is collaboration. "It's not about showcasing one agency over another. It is about us working together."
BMS's Silverman concurs. "The community-based organizations we chose have different areas of expertise, because not only do you have a problem of HIV, you have other social issues. So we have one that can address adherence problems with medication, or substance abuse, scattered-site housing. Iris House specializes in women's and children's issues. Harlem United specializes in substance abuse and difficult-to-treat individuals."
The Harlem Directors Group provides overall management of the program; it handles the money, keeps the records, and makes the reports. HCCI, which is a consortium of over ninety faith-based organizations in Harlem, coordinates the activities of the peer educators from all of the organizations and provides their initial and ongoing training. Each of the organizations has a project coordinator who oversees that organization's peer educators and who meets weekly with the project coordinators of all of the other partners to integrate their efforts and pinpoint and address any problems.
The third element of the TLC approach is saturation. Rather than having the testing van parked in different places on different days, it stays in one place for several weeks while the peer outreach workers work the streets in the immediate vicinity. "Our goal is to guide people from HIV testing, to knowing their results, and finally to access treatment if tested positive," says Ravinia Hayes-Crozier. "This program will be efficient because our initial focus is on two specific neighborhoods in Harlem. The best way to support people in getting tested and follow-up for HIV/AIDS is to have as narrow a focus as possible and to provide consistent messages that will be delivered by community members."
Making the Link"It's almost like a continuum, or actually like a circle," says BMS's Silverman. "We have outreach. We have testing. We have the designated treatment center, and each treatment center has what we call a navigator, who personally helps people navigate their way through the medical care system. Within each community-based organization we have a project coordinator who is very familiar with Test, Link, Care and who personally navigates people through the social service end."
The linkages begin with the outreach workers and the mobile van going into the streets. "We use a six-week time frame," says Silverman, "and what we try to do is saturate one square mile." The first location of the mobile testing van, for six weeks beginning with the program's May 1 launch date, is on Madison Avenue and 125th Street. The saturation area extends five blocks in every direction and includes the busy 125th Street and Mount Morris Park. The van itself is parked just doors from the Mount Morris Baths. (The Department of Health van is on site Monday through Friday during the day, and the Community Healthcare Network van is there on Wednesday evenings and all day Saturday.) Both outreach workers and van personnel are in full operation during the first five weeks. Outreach is scaled down (mostly tabling and handing out literature) during the sixth week, and no tests are performed in the van, to allow those who were tested late in the cycle to come in and get their results.
Myrna Rodriguez is an outreach worker. "I've been working with HCCI [Harlem Congregations for Community Improvement] for two years. My job today with Test, Link, Care is to go out there and work and talk with people and tell them how to get tested for HIV/AIDS, syphilis, hepatitis, diabetes. When I approach somebody, I first introduce myself and the organization I'm from, and then I let them know that I have some information. I don't just hit them right away with that we're testing for HIV. I explain to them what the literature's about, and then I go into the van and why the van is there and the reason, and how it can help that person. I'm diagnosed with HIV and AIDS, so I can relate better to people out there, and I know how to relate to people."
Not everyone the outreach workers speak with is ready to come to the van to be tested. But the van -- and the peers -- will be there the next day, and the day after that. There's time to get to know each other, to check out the van, to build trust.
Each outreach worker has a supply of tracking cards, numbered to protect confidentiality, perforated, with identical information on each half. When someone indicates a readiness to get tested, or when the outreach worker actually escorts that person to the van, the person is given one side of the tracking card and the outreach worker keeps the other half.
The van is a model of modern, mobile efficiency. It is a standard Department of Health mobile testing van, and in no way labeled "HIV." In fact, the medical personnel working the van can and do perform a variety of tests besides HIV screenings. Inside, there is not an inch of wasted space. There are two small cubicles, each with two seats and a small writing table -- and, importantly, a door to ensure privacy -- where those coming to be tested are interviewed about their medical histories and HIV risk factors and where pre- and post-test counseling take place. Further back, there are two cubicles where blood is drawn.
When an individual comes into the van, he or she gives the tracking card from the outreach worker to the counselor or phlebotomist. The person receives pre-test counseling, blood is drawn, and the person is told when to return for her or his results. The van worker holds onto the tracking card. If the person tested does not return to receive the results of the test, the DOH or Community Healthcare Network sends a reminder letter, and may call the person on the phone. There are also incentives to return, in the form of T-shirts and baseball caps with the TLC logo.
Test results and post-test counseling are provided in the van, in one of the private interview cubicles. If the individual has tested negative, post-test counseling focuses on staying that way. HIV transmission is discussed, along with the hazards of unprotected sex and needle sharing. Harlem Directors Group has a prevention education grant, and the other TLC partners have grants that address the needs of high-risk but still negative individuals. Those who test negative are referred to these organizations. Other issues are also addressed, many of them themselves risk factors for HIV: Is there a problem with substance abuse? Housing? Domestic violence? Are there other medical problems, such as diabetes, hypertension, other STDs? The counselor has a full roster of programs offering supportive concrete services to which clients can be referred.
If the person has tested positive, it is the post-test counselor's job to explain what the test results mean and to hook that person up with appropriate medical and other services. As part of the TLC agreement, North General Hospital and the Community Healthcare Network have agreed to see people who test positive on the van within 48 to 72 hours of their receiving their test results. When the results are given, an appointment is made, and the tracking card, with all of the appointment information on it, is returned to the individual. The person is given a Metrocard to make sure that he or she can get to the appointment, and sometimes phone cards are also given.
Jill Silverman stresses that the atmosphere in the van is important. "We make sure that when people receive their results and they're in the post-test counseling session they have something to drink, water or juice," she says. "We try to make the experience as pleasant as possible, so then maybe they'll tell a friend or a buddy or a family member or their partner or partners. We try to do everything to change the perception in the community, change the perception about medical providers in general. And we certainly want to try to change the perception about HIV -- that it's not a death sentence, that medical care is usually appropriate and necessary because you will live longer and you will live better."
The Project So FarWhen Body Positive visited TLC, the van was in its sixth week at its first site, and the project had begun to have some idea of how things were working.
During the first four weeks of TLC's operation, from May through May 26, 283 individuals were tested for HIV. "That's an awful lot of tests in four weeks," says Silverman. "So we feel immensely successful." Although only preliminary results are in, she estimates that 4 to 6 percent of those tested will be HIV-positive, well above average.
The tracking system also seems to be working pretty well, although there were initial glitches. "We have trained the outreach workers not to give the tracking card unless they're pretty sure the people will test. The first week it didn't work so well. They didn't understand. They thought they would be rewarded on how many cards they passed out. Once we cleared that up they understood that, no, we're really looking for people who test, and ultimately we're looking for people who will receive their test results. If you go out and test 100,000 people, it's no good if no one wants their results back. So we keep reinforcing that, and it has worked."
One area that everyone agrees is working well is the use of peer outreach workers. Cheryl Mchunguzi is the Health Educator with the Community Service Program at HCCI and supervises the peer education program. She believes strongly in the importance of HIV-positive peer educators reaching out to get people to test. "There's a certain part of that that you have to live yourself," she says, "in order to have a certain type of empathy for people on the street who don't want to know their status, who are afraid of knowing their status -- the repercussions involved in people knowing their status, or negotiating things with family members. A lot of the peers have already gone through those experiences, so they're sensitive to approaching people about testing, able to feel some of the emotional responses they get over trying to get tested, getting results. They've gone through that already."
Jill Silverman talks about the positive aspects of the work for the peers themselves: "These are people who are so passionate!" she says. "They live and breathe HIV every day, literally, and for them to go out and do something where they help other people, it's very empowering. Their self-esteem goes through the roof. They become more adherent to their own medication. It's taking people within the disease to help people that are affected -- infected or affected -- and it's just one really nice circle with a common goal."
The peers themselves speak enthusiastically both about the program and about what their involvement in it means to them. William Lilly, who was diagnosed in 1992, says, "I now work with the van, trying to give people confidence to get tested. I'm learning how to communicate with people, preventing people from going through what I went through, from my experience and my illness, so that they will be tested sooner and they won't have to go through what I went through. It's just a love of giving to people, giving back toward the community that gave to me -- that people will be getting stronger and know their status."
Lilly, his wife Eleanor, who works with him, and fellow outreach worker Myrna Rodriguez stress that their outreach work, and the hours they put in, are not limited to what is required, and paid for, by TLC. "My concern is mostly senior citizens," says Eleanor Lilly. "It's difficult to have the senior citizens to be tested, because they're set in their ways. We try to get them by going to the senior citizens' housing, and we bring cookies and little things like that. While they're eating their cookies and drinking their coffee, we get in touch with them. We explain to them how many older people have been infected and found out they are infected, and that's how we get to them."
According to Myrna Rodriguez, "It's a job, but we do it because we know what we've been through, and we try to stop people from going through what we went through." Eleanor Lilly agrees. "We're supposed to put in seven hours, but we ourselves -- not by the organization -- we ourselves do more than that, because this is a heartfelt thing. This is not a thing where, okay, I worked for seven hours so I'll get paid for that. This is from the heart."
The three coworkers have become something of a family, a self-formed support group. "We get stressed out, we call each other," says Eleanor Lilly. "We call each other, talk to each other, take each other to the hospital, go sit with each other when we get sick."
"When we have problems," says Rodriguez, "we discuss it among each other. Even though we have case managers, there's certain things that you don't feel comfortable talking with a case manager and you do with a person that you constantly are working with him, constantly calling each other."
And according to William Lilly, "I'm too blessed to be stressed."
Looking aheadNo one associated with TLC sees it as a magical solution to the disproportionate spread of HIV in communities of color. "We've been out here for years trying to get people to test," says Cheryl Mchunguzi. "People have not been tested."
She sees alienation as one of the major barriers to testing. "We are, in the African-American and Latino communities, extremely proud people, and we are raised not to involve ourselves in things that embarrass our families or ourselves. In our community, HIV is still mostly stigmatized. You would be alienated once people did find out about your status. My experience has been that some people are not being loved by family, friends, and loved ones once they have received a positive diagnosis. And people would rather sit with not knowing their status, and live that life as long as they can until they get sick and there's no way they can recover, because in that window they still have the love and respect of their families and loved ones."
Still, Mchunguzi sees some improvement. "Working with the faith-based community as I have around HIV and AIDS for the past two years, I see people taking more of a stance of what would Jesus Christ do if he was faced with HIV and AIDS? A lot of the ministers and congregations are beginning to get it. It's not about how they got it, or whether they were having unprotected sex or intravenous drug use, or whether they were faithful or not. It's about what can we do about this pandemic, and our people in our community dying and suffering for lack of love. This is what Jesus Christ came here to teach, unconditional love regardless of situation. A lot of churches are understanding. A lot of ministers are understanding."
For Bristol-Myers Squibb's Jill Silverman, the immediate future holds some practical challenges. This is, after all, a pilot project, and the pilot period ends in September. The purpose of the drug company's seed money and the hands-on technical assistance it has provided through Silverman is to put a program in place, to refine it and make it work, and to help it become self-sustaining. "It's not just throwing money and saying do whatever you want," she says. "Everyone could always use funding, but how do you work the funding to your advantage? How do you get the most out of it, and most important, how do you advocate to get more funding? You don't want this just to be a Band-Aid. You want this to be a permanently funded program for this community. The only way to do that is that people like me go and advocate to the CDC. We advocate to Ryan White. We try to get this program implemented permanently within this community." Toward that end, Bristol-Myers Squibb has hired a proposal writer to work with TLC, and the program hopes to get on the docket for a presentation to the CDC on July 31.
As the first six-week cycle of the pilot program comes to a close, the mobile van prepares to move to its next location. It will be parked near the Rutgers Tournament, a huge, community-based basketball program.
Back to the July 2000 Issue of Body Positive Magazine.
This article was provided by Body Positive. It is a part of the publication Body Positive.