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Reaching Out: The BP Helpline

November 1998

Historically, hotlines have provided one of the most valuable services in the AIDS epidemic, offering the means for members of stigmatized minorities to share information, get help, and organize. The United States is filled with AIDS hotlines, ranging in scope from national, like the CDC's hotline, to local, like the Body Positive Helpline. All are now staples of AIDS support services.

The Early Days

Fortunately, large cities like New York are blessed with myriad AIDS hotline options. Founded in the late '80s, the Body Positive Helpline is one of the city's oldest. In fact, one of Body Positive's first grants was to establish an HIV/AIDS hotline.

The late '80s were a different time from today's "Protease Moment." Carmen Navarro, Body Positive's Co-Director of Community Outreach and Education, remembers those crazy days. "People would call in crisis all the time. Resources were scarcer." There were only a handful of organizations providing services to PWAs. The approved treatments were AZT, Bactrim, and a few other drugs. Alternative treatments, like those available through HEAL (Health Education -- AIDS Liaison), DAAIR (Direct AIDS Alternative Information Resources), or the PWA Health Group, were harder to obtain. The Gay Men's Health Crisis hadn't become the multiple-service corporation it is now. For all intents and purposes, case management did not exist. Although some organizations for people of color existed, these organizations and the people of color themselves were only very slowly making it onto the larger AIDS radar screen. And if you were an immigrant, you were actually told by AIDS professionals to lie if you had to get a blood test or in order to get any kind of services. (Note to the INS: Those AIDS professionals have all died now.)

There was a sense of urgency and desperation in the AIDS community then that has since largely dissipated. This is a good thing. Unfortunately, much of the energy of that time seems to have dissipated as well, which is not so good, especially given the heinous legislation now being formulated by various legislatures. But I remember those days. To put it crassly, people were dropping like flies. It was nightmarish, and also exciting and exhilarating. As a friend said, melodramatically, "People were doing something when the point was just to do anything."

In those hectic days, the Body Positive staff worked the Helpline. "It was a way of tying staff to the community," says Navarro. "You would learn what was happening out there." According to Tom Cozart, Coordinator of Support & Volunteer Services, things have since quieted down. The peer-based Helpline is now staffed by volunteer nonprofessional counselors, although BP staff do cover when necessary. The Helpline now has only one telephone line, operating from 2:00 to 6:00 p.m. Monday through Friday. "Counseling and crisis calls have decreased," says Cozart, who estimates the average number of calls at about 200 a month. All of the Helpline volunteers I spoke with concurred. There are fewer calls demanding intensive crisis intervention, fewer calls from people in serious crisis. There's less drama. According to one volunteer, "There is less a sense of desperation now."

"In the beginning," says Navarro, "people were hungry for information: What are the new drugs? What services are out there? There's a lot more out there now." Just flipping through the back of Body Positive gives the sense of how much more is available these days. It's still not enough, but it's better than in 1988. Not only are there more resources today, but the past decade has also seen increasing professionalization of what is now an industry. Gone are the days of answering machines in living rooms for the major service providers. This is the era of complex government grants, downtown office space, and certified social workers.

The Helpline Today

So the types of calls received by the Helpline have changed as well. According to Cozart, most of the calls are informational now. "PWAs [and HIV-positive people] have grown more sophisticated. People call with specific medical questions now." Since BP volunteers are not medical professionals, they usually refer those questions to the experts, like TAG (Treatment Action Group) or the AIDS Treatment Data Network. People also call looking for referrals to doctors and specific medical services, such as therapists or nutritionists. And they call for information about BP's many programs.

Body Positive still gets "the newly diagnosed" calls -- you know, the people who just found out. Some of those calls are even referred to them by other service providers. "We're often the first place they come to [when they test positive]," says Cozart. "We have to make a good impression." As has always been the case, all of the calls are anonymous and confidential.

No longer does the Helpline get the transmission calls, like "If I am HIV-positive and I masturbate and I ejaculate and some of my semen gets in my partner's eye, can my partner become infected?" (If you want the answer, call the Helpline.) Navarro remembers, "The Helpline was the place where people could go with questions they were embarrassed or ashamed about, where they could ask [what they considered] stupid questions." But if people who have these perhaps naive questions are not calling the Helpline today, and with the number of new infections remaining steady at about 40,000 a year, the question becomes, Whom are they calling. (By the way, the author's favorite transmission question was the one about the farm boy, the cow, and the infected hamburger. Don't ask.)

Not all of today's calls are straightforward information calls. In addition to the infrequent counseling calls, Cozart listed the other types of call they received:

  • The "morning after" calls.

  • Calls from people who have tested negative but refuse to believe the results.

  • Calls from people who want to be diagnosed on the phone.

  • Crank calls, including safer sex crank calls (which may sound intriguing, but the reality is less than charming).

Some of the other questions coming up at the Helpline concern the new HIV legislation, like partner notification and criminalization. Given the punitive nature of these new laws and proposals, and their serious consequences for HIV-positive people and people with AIDS, the number of calls about these questions will undoubtedly increase.

The Volunteers

Regardless of the subject, all of these calls are handled with intelligent compassion. Several Helpline volunteers were interviewed for this article. All are committed, deeply caring people, men and women from all walks of life. The deep sense of commitment and dedication each of the volunteers expressed was striking. All spoke about "giving something back to the community." These are really good, competent people invested in helping others.

Cozart selects Helpline volunteers from the pool of potential volunteers who come to Body Positive. Now, don't misunderstand. It's not like BP has hordes of people clamoring to volunteer. Few AIDS organizations suffer from the embarrassment of riches that comes from having too many volunteers or too little work. But BP does get enough people to staff the Helpline and provide some backup. The Helpline has a nondisclosure policy about volunteers: They don't divulge their names, serostatus, or sexual orientation to the callers. The focus remains on the caller and the caller's needs, as should be the case with all good client-centered services.

BP staff, including Tom Cozart, fill in when necessary. That sense of commitment and cooperation keeps Body Positive a truly grassroots organization. One Helpline volunteer described the atmosphere as "warm, supportive, and as stress-free as possible." It's a feeling the Helpline volunteers try to transfer to their calls as well. While most organizations maintain definite boundaries between the various departments or between staff and volunteers, here everybody pitches in as needed. It seems to be part of BP's organizational culture.

Helpline volunteers are trained by Cozart, in his capacity as Volunteer Coordinator. They learn various counseling techniques, such as active listening, summarizing, paraphrasing, and the use of open-ended questions. Each volunteer works one four-hour shift per week. They are armed with the Helpline Bible, a chunky binder filled with current referral information. Other service providers also supply BP with up-to-date announcements about their various activities, helping volunteers to stay abreast of what's happening. The Helpline Volunteer space is a comfortable cubicle with Cozart almost next door. This is one time when having your supervisor nearby is not so bad.

Working The Phones

"You learn from the callers and they learn from you. It's a win-win situation." That's how one volunteer described working on the Helpline. When asked why people call the Helpline, one told me, "People are more comfortable talking to a stranger. There's a safety in anonymity." Another said, "For some people, it's hard for them to find support, so they call the Helpline." In talking about telephone counseling, another volunteer mused, "On the phone, you have more leeway. When a person sees you [in a counseling situation], you can hide less. You can keep a distance [on the phone], remain detached and yet have the person feel that you're right there with them. Tone of voice can say a lot." According to still another, "There are times when I've hung up the phone and felt that I've connected with that person."

One of the most difficult things about Helpline work is the lack of follow-up. Volunteers don't really know what happens after they hang up. "Ninety-nine percent of the time you won't know that you've helped someone, but most of the people say 'Thank you' at the end of the call."

Given the nature of the beast, there is an almost immediate gratification, though, in working on the Helpline. It's one of its contradictions, just like the ability to open up with a stranger. A person calls with a question. You answer it. You've done your job and provided support in a very concrete way. That can be a satisfying feeling in a field where giving or getting help can become a protracted exercise in futility and/or frustration.

There's a sense at the Helpline that callers are better informed now. "More sophisticated" as someone said. Resources have increased, so people can get their hands on more stuff. But that's not surprising, given that most callers self-identify as HIV-positive and gay, putting themselves among those probably most likely to have been exposed to information about the virus.

Callers to the BP Helpline are never asked for demographic or other identifying information. When it is volunteered, it is recorded, in an attempt to gain a general idea of who is calling. Since information about race and ethnicity rarely enters into a Helpline conversation, it is difficult to ascertain who is what ethnically or racially, although most of the callers are English speakers. Given the increasing numbers of HIV-infected people of color, it might be useful to know how many are using the Helpline.

Volunteers have noted an increase in heterosexual callers, especially women, which again follows the epidemic's demographic trends. Again the question arises though: If the number of infected straight people is increasing, and the Helpline's callers are predominantly gay, then where and to whom are the straight people going for help? Everyone interviewed for this article agreed that it was an intriguing question.

Interestingly, there is also an increase in overseas calls. People calling from Latin America and Spain seem to be getting copies of El Cuerpo Positivo, BP's Spanish-language magazine. Although they generally come in to the administrative offices, these are treated as Helpline calls.

Some Personal Impressions

The more I learned about the Helpline, the more I appreciated the commitment of the Helpline volunteers. Telephone hotline work lacks the high visibility of other types of volunteer work. You remain anonymous, out of the spotlight so to speak. Yeah, I know I mentioned that the self-contained nature of telephone counseling can be satisfying. But I hear a lot about people who are buddies or kitchen help or outreach workers. I never hear much about the men and women who staff the city's various AIDS hotlines. More than ever, I appreciate all those folks who volunteer to do the more "unglamourous" jobs in the epidemic. You know, not everybody can be in the spotlight. Thank God some people don't need to be.

The other thing I was struck by was how the epidemic has changed. I moved back to New York in 1996 after an attempt at doing national work. When I returned, I was amazed at how the city had changed. I was also amazed at how so many of the PWAs I knew had died before the dawn of The Protease Moment. Of the few who are still alive, protease inhibitors have essentially brought them back from the dead. The epidemic has changed -- significantly for the better in some communities, and slowly for the worse in others. I'm glad that the Helpline is only getting 200 calls a month, but I wonder where the other calls are going. I hope that some of them start coming in to Body Positive. But whatever community people live in, they need accurate and current information, and the occasional sympathetic ear. They can find that at the Body Positive Helpline, 1-800-566-6599.

Back to the November 1998 Issue of Body Positive Magazine.

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This article was provided by Body Positive. It is a part of the publication Body Positive.