Being Alive - October, 1999
Walt Senterfitt

More than 2,000 leading scientists, researchers, policy analysts and frontline prevention workers gathered in Atlanta earlier this month for the first national meeting devoted exclusively to scientific efforts to monitor and prevent HIV in the US. The CDC (Centers for Disease Control and Prevention) sponsored the conference. Among the 2,000 were a handful of us HIV+ sorts, exploring "the other side" as Juan Ledesma says in his column. Whereas most of us have long had greater interest in treatment than in prevention, increasing numbers of HIV+ folks are working to bring our perspective to prevention in general and to develop effective and acceptable strategies for our fellow positives.

The conference was also an occasion to assess the state of the epidemic. What are the latest trends in AIDS and in new HIV infections? Is the decline in mortality and new cases continuing? Who is getting infected now and why? What interventions are working and which are not?

The news from the conference seemed to be widely reported in the press. I will try to share things that may not have been written up elsewhere, and emphasize things that bear repeating. Overall, I found the conference invigorating, as Juan did, though that reaction seems rather strange. There was no particularly good news. Perhaps the excitement comes simply from being around and being stimulated by a couple of thousand other people who are generally working hard against HIV in different contexts all around the country. Here at home, it seems things have become routine. Some folks have dropped out because of fatigue or illness while others have gone on with the rest of their lives and left HIV behind as their drugs work well. More power to them! Nevertheless, spontaneity and activism -- perhaps creativity also -- are rare in the world of HIV in Los Angeles. It's good to get one's batteries charged.

Attention Paid to HIV-positives

This was the first national conference where there was any significant attention paid to prevention strategies for HIV+ people... not many sessions and not a lot of data, but a start. The HIV and prevention communities of researchers, public officials and frontline practitioners are gradually coming to realize that trying to stop HIV without paying as much attention to HIV-positives as to HIV-negatives is about as likely to succeed as a prizefighter confronting a powerful opponent with one arm tied behind his back.

Furthermore, unless these same people pay very close attention to what HIV-positive people want and need, what we will and won't accept, these efforts will be for naught. Some of the studies presented at the conference shed interesting light on why HIV+ people practice risky and/or safer behaviors with partners and what might work as strategies to help reduce risk while improving the quality of life for those living with HIV/AIDS.

HIV+ in the Heartland: Gay and Bisexual Men in Minnesota

A very charming and witty [maybe it was the British accent] gay sexologist at the University of Minnesota, Dr. Simon Rosser, was asked last year to help explore the attitudes and behavior of positive gay and bisexual men in the state. Nearly all Minnesota cases are among gay men. He met with the planning committee for a statewide conference for PWAs to design a survey as well as focused group discussions. Among other items, Dr. Rosser proposed asking unusual questions because he thought the answers might be significant, such as "Do you believe that you have infected any other people either before or since you became aware of your own status? If so, how many?" The academics, social workers and public health officials on the planning committee were aghast. "Oh no, those questions are too sensitive and intrusive." The PWAs on the committee disagreed. "Go ahead and ask. We'd like to know the answers too." He also asked questions about how each person believed he got infected and by whom, as well as many of the more standard questionnaire items about mood, symptoms, behaviors, attitudes, coping styles. One out of every 25 men known to be living with HIV in the state came to the conference and participated.

Most men knew the person who infected them. Half were infected by someone they love or loved, i.e., a long-term partner. This finding is congruent with another that found a high degree of unsafe sex with a serodifferent partner in relationships. Twenty-nine percent were infected out-of-state, reflecting more frequent instances of "having a good time" on trips than moving back home or to the state after infection. The median time between infection and testing positive was three years, and the median time between testing and accessing services was one month. This was not a group that had access problems or that let the stress of finding out keep them from getting help right away.

Since diagnosis, 24% reported practicing unprotected insertive anal or vaginal sex with someone who was not HIV-positive. On the other hand, 50% of the men reported that they had essentially shut down sexually since diagnosis and were not sexually active with others at all. Before diagnosis, 37% of the men reported they had infected someone else, and 14% reported infecting at least one other person post-diagnosis. The numbers of people they believe they had infected varied widely within this group. Most of the men who had infected someone pre-diagnosis (i.e., before getting tested) had infected one or at most two other people, whereas about half the men who reported infecting at least one person since learning their status reported infecting several other people. One person believed he had infected more than 25 others. If these findings are borne out in other studies, this is an important fact: most new transmissions of HIV come from a small fraction of those who are positive. Dr. Rosser estimated that perhaps 75-80% of HIV transmission by this sample of men was done by 5% of them.

What makes this small group different? The strongest single predictor of infecting someone else, and of engaging in unprotected risky sex with someone who is negative or of unknown status, was depression. Symptoms of depression were very common in this group. More than 50% reported serious suicidal ideation since their diagnosis and 12% had made a suicide attempt.

There were other predictors of unprotective, insertive sex and of infecting someone else. These include youth, more frequent sexual activity, sexual compulsion, less likelihood to disclose HIV status before sex, higher self-perception as "contaminated", higher likelihood to report oral sex as the cause of infection, and awareness of personal difficulty in practicing safe sex.

Another interesting finding is that most men who reported depression, sexual compulsiveness and high levels of sexual activity had these symptoms or patterns before they became infected. This suggests ways to help identify those HIV-negative men most likely to become infected, as well as ways to help identify (perhaps at the time of HIV testing or beginning medical care) those most likely to need extra support to make their behaviors safer as positives.

What Positive Men Want from Prevention

Rosser's findings, and those from another study, make clear that most men will not seek out or even agree to participate in a program that is promoted as prevention. Those studied report that they think this is irrelevant; it is boring and doesn't give them something they need. However, nearly all positive men (gay and straight) interviewed said they would like programs that help them feel less isolated and lonely, and particularly programs that might help them find other HIV-positive partners for intimacy and/or sex.

Some of the men also would like help, as long as it is sensitively provided, dealing with sexual compulsion, with other addictions and with depression. Many of the depressed men were not aware that their symptoms might be treatable with medications, therapy or peer-led social activity. As you would expect, nearly all the men in Rosser's study who had infected someone else, inadvertently or not, felt badly about it, though most had come to terms with their remorse. Most were aware that they had difficulty controlling certain parts of their behavior. At the same time, these same men mostly felt that their problematic behavior was not all that satisfying anymore, however hard it was to change it.

Comment. Though this is mostly about one small study, the findings are plausible. The comments rang true. I would enjoy hearing reader's comments and suggestions about this report, and about ways they deal with the issues mentioned in their own lives. I believe we need to pool our brains and energy to help each other get more quality out of our lives, and at the same time help protect our loved ones and our communities.

Trends

Less than two years after headlines hailing dramatic drops in AIDS deaths, the mortality rate from AIDS is still declining -- but far more slowly. The CDC, New York City and Seattle all presented data documenting this slowdown in improvement, true for new AIDS cases as well as aids-related deaths. Data from Los Angeles County presented in Chart 1A and 1B reflect the same trend. Note that the national data are for full-year periods, whereas the Los Angeles County data are for January-June only (so that I can present 1999 information).

Comment. Most experts agree that the largest part of the declines, across the board, is due to life-preserving and aids-delaying effects of protease inhibitors, NNRTIs and combination therapy in general -- first widely used during 1996. For some people with AIDS, unfortunately, the new drug benefit lasted only a year or two or three, mostly because they had earlier become resistant to a number of the older AIDS drugs. Similarly, some people who were just on the other side of an AIDS diagnosis (e.g., having a CD4 count of 205) progressed to full-blown AIDS, and some failed their regimens as well. The overall result was a slowing in the decline of sickness and death rates.

The rate of decline in Los Angeles County was more dramatic in 1997 and 1998 than in the rest of the US, mostly because we have relatively better access to drugs and medical care for more people than most other places. Since a larger percentage of people with or near AIDS benefited from the drugs early on, the rates dropped more quickly but also leveled off sharply in 1999. There will be no more "easy" successes in bringing down the AIDS and death numbers. The people already in care are for the most part already benefiting from the therapies available, unless they cannot tolerate them or are becoming resistant. New people are getting infected at about the same rate as they have been for the past several years. So more declines will probably depend on our ability to get new drugs or more effective strategies to use the old ones out of the research/industry establishment and/or our ability to get our fellow positives into care and treatment.

Who Is Getting Infected?

The CDC estimates that about 40,000 people a year are getting infected throughout the US, and 5% of them, or 2,000, live in Los Angeles County. Nationally, African American men represent the largest number of new infections, with white men and African American women not far behind. Next come Latino men, Latina women and white women. Asians and Pacific Islanders constitute about 1% of infections nationally but almost 3% in Los Angeles County. Gay men of color comprise a significant and rising proportion of new infections, as do African American men and (on the east coast) African American and Latino male injection drug users (IDUs). In contrast to the rest of the country, gay and bisexual men are still the group likeliest to become infected in LA, with IDUs contributing a much smaller share. Also, women represent a smaller proportion of the total in Los Angeles County. Chart 2 may help.

Comment. Even with changes over time, the HIV epidemic in Los Angeles County remains more racially diverse, more male, and more driven by male-to-male sex that in the United States as a whole. Nationally, about 30% of new infections are among women, compared to 18% in Los Angeles County. In LA, African Americans are the most heavily impacted by far, with three times as many infections per 100,000 people as among white and Latinos. However, there are many more Latinos (43%) and whites (34%) in the County's population's than African Americans (9%) or Asians (14%).

Why Are People Still Becoming Infected?

Since we are into the 18th year of the epidemic, and since surveys show that most people know how HIV is transmitted and how to protect themselves, why is the infection rate not going down? There is no simple answer, but the conference had various presentations highlighting six key reasons or factors.

1. STD (sexually transmitted diseases) rates have begun to rise again after years of decline, especially in gay men and in African American men and women. Other STDs affect HIV transmission in two ways. HIV+ people who get another STD become a lot more infectious to others while that STD is active, because the new STD stimulates the immune system, which means more HIV is produced as well as more white blood cells which carry the HIV into semen, cervical/vaginal secretions and blood. Plus some STDs create sores through which HIV can be more easily spread. On the other hand, when an HIV-negative person has an STD, he or she is much more susceptible to getting HIV from a partner who is infected.
2. Syphilis, in particular, shows evidence of dramatic resurgence among gay men, from evidence presented by the Seattle and King County Health Department. Syphilis had been reduced to six total cases in 1995 and one in 1996. However, in 1997 syphilis increased to 19 cases and then to 88 in 1998. Gay men accounted for 21% of the cases in 1997 and 85% of the cases in 1998! So far in 1999, the rates of syphilis are doubling again over 1998 and more than 90% are in gay men. We do not know the picture in Los Angeles, because public health surveillance of STDs overall and by sexual behavior in particular is poor.
3. Young gay and bisexual men are being infected at increasing rates. Among 15-22 year olds randomly surveyed in five cities, the average HIV infection prevalence was more than 7% (as it was in Los Angeles). Among African American and mixed-race young men, the rates ranged from 15%-19%. Furthermore, the study shows that from 2%-5% of these young gay/bi men are getting newly infected with HIV each year! Young women, especially African American young women and those in the South, are also getting infected at high rates. Clearly, there is a problem in helping our youth protect themselves, especially those already burdened by poverty, racism and homophobia in addition to the usual youth traits of perceived invincibility, cynicism and disregard for the warnings of authority figures.
4. Optimism about new treatments is associated with decreased protection for some. USC researcher Sheila Murphy surveyed 416 men in West Hollywood who had heard of protease inhibitors. The more the men were optimistic about the new treatments, the less likely they were to use condoms during anal sex, to abstain from anal sex or to limit their number of sex partners. This association was true for both HIV positive and for HIV negative men. Similar findings emerged from studies of gay men in San Francisco and in Seattle.
5. Past studies of the dramatic decrease in unprotected sex among gay men in the late 1980s through the early 1990s showed knowing someone with AIDS or someone that had died from AIDS was the most powerful predictor of changed behavior. As fewer people are around in the community with obvious symptoms of AIDS, and as the obituaries and funerals have declined tremendously, this stimulus to change behavior is not so available (Thank goodness! Find other ways!).
6. The rapid increase in incarceration rates, especially among African American and Latino young men, may also contribute to the spread of HIV, both in prison and after release. One study suggested that approximately 17% of all persons with AIDS in 1996 and 13-19% of those with HIV infection had been released from a correctional facility during that year. Only 10% of state and federal prisons and only 5% of city and county jail systems offer comprehensive HIV prevention programs for inmates. [Factoid: Did you know that the California Department of Corrections specifically prohibits the use of condoms during conjugal visits at California state prisons? Might be used to bring in contraband, officials say.]

Comment. The alarming rise in syphilis among gay men in Seattle, and the poor surveillance system for STDs among gay and bisexual men in Los Angeles County, should be taken as community red alerts. STD rates are not only markers for the extent of unsafe sex being practiced but also directly increase the risk of HIV transmission. For both reasons, rising STD rates are harbingers of rising HIV infection rates.

Next month, I will write more about some of the other studies on prevention for positives. Please feel free to e-mail me with your comments at WSenterfit@aol.com

991001
BA991001

ÆGIS is made possible through unrestricted grants from Roxane Laboratories, the National Library of Medicine, and donations from users like you. Always watch for outdated information. This article first appeared in 1999. This material is designed to support, not replace, the relationship that exists between you and your doctor.

Copyright © 1999 - Being Alive. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used. Subscription lists are kept confidential. Being Alive, 621 N. San Vicente Blvd., West Hollywood, CA 90069 TEL: 310.289.2551; FAX: 310.289.9866; Email: BeiAlive@aol.com  http://www.beingalivela.org/