Important note: Information in this article was accurate in March 2001. The state of the art may have changed since the publication date. At the 8th Conference on Retroviruses and Opportunistic Infections, the Centers for Disease Control (CDC) rolled out its newly expanded initiative to cut in half the estimated 40,000 new HIV infections a year in the US. As the Director of the CDC's Division of HIV/AIDS Prevention, Dr. Rob Janssen explained, although previous CDC, state and local prevention efforts and the self-organization of gay men (in large part) have succeeded in reducing the annual rate of new infections from its epidemic high in the mid 1980s, we have not driven it down in the past eight years. It has been stuck at around 40,000 a year since 1992, by the CDC's estimate.
What's the CDC's strategy for jump-starting the curve downward again? It is called SAFE: Serostatus Approach to Fighting the Epidemic. It is essentially an approach Being Alive has been advocating for several years, an approach that centers on enlisting and supporting HIV+ people in caring for our partners, our communities and ourselves.
As Janssen (coincidentally the brother of Los Angeles County's Chief Administrative Officer) explained, "Historically, HIV prevention programs have been based on behavioral risk factors and demographic characteristics such as race/ethnicity, gender and age. Activities have been tailored to meet the needs of specific groups without regard to serostatus. …In 1999, only a third of publicly funded HIV prevention programs listed individuals living with HIV as a priority population for their programs [and the amount of funding devoted to programs for positives was very, very small]. SAFE is a new prevention strategy that the CDC is launching to reduce HIV transmission primarily by expanding prevention programs to include individuals living with HIV. …We believe that $300 million will be needed to fully implement SAFE as an expansion of current prevention programs, though we have launched parts of it already."
Experience has shown that effective prevention interventions must target the needs of the individuals for whom they are intended. SAFE is based on the knowledge that services and interventions for high-risk negative individuals may not address the needs of individuals living with HIV. SAFE directly targets the prevention needs of individuals living with HIV and their partners, needs the CDC and local health departments have relatively neglected for far too long.
We need new strategies to cut the stable infection rate. With treatment advances, more people with HIV are living longer and better lives. Treatment advances have also contributed to complacency and increased risk behavior in some high-risk communities.
There are five action steps to the SAFE initiative. For each action step, there are specific activities that the CDC, in collaboration with its partners in the public and private sectors, is undertaking. Being Alive, Women Alive, the Los Angeles Gay and Lesbian Center, Bienestar, Minority AIDS Project, the Asian Pacific AIDS Intervention Team, LA Shanti, Common Ground, Tarzana Treatment Center, the Oasis Clinic, and the Los Angeles County Office of AIDS Programs and Policy are among the partners already on board. Janssen's plenary talk and press conference at the Retrovirus Conference was intended to promote support and involvement by health care providers for individuals living with HIV.
The first step is to increase the number of infected individuals who know their HIV status, and who know it as early after infection as possible. The CDC estimates that there are 800,000–900,000 persons in the US who are infected with HIV. Of these, it estimates that 625,000 people know they are infected while 175,000 to 275,000 do not. The CDC suspects that an important proportion of transmission is occurring from those who do not know they are infected. We have little data as yet to evaluate this suspicion, but one recent study at the Options Project at San Francisco General found that individuals who did not know they were infected infected 11 of 17 persons with recent HIV infection diagnosed during 2000.
Sometimes public health can benefit from detection of diseases where there is little to offer the infected individual. Fortunately, this is not the case with HIV a longer -- the benefits of knowing one's status clearly accrue to the individual as well as the community. Just since 1996, HAART has increased the time from acquiring an HIV infection to an AIDS diagnosis from a mean of 9 years to more than 11 years. Similarly, the time of survival after an AIDS diagnosis has increased from about 1.5 years to over 6 years -- and both symptom-free and total life span are continuing to lengthen on average. Yet, we have a long way to go in sharing these benefits with all who are infected: a persistent 25% (some studies show as many as 40%) of people who are diagnosed with AIDS each year, find out their HIV status only at the point they are sick and come to an emergency room or clinic for treatment of what turns out to be their AIDS-defining illness.
From the public health standpoint, several studies have now shown that persons who know they are infected make efforts to reduce their high-risk behavior, decreasing the possibility of HIV transmission. (This is certainly the anecdotal and personal experience of most of us, and it is heartening to see confirmatory details emerging from research studies.)
A CDC study conducted in three states interviewed 148 gay and bisexual men and heterosexual men and women within 12 months after they found out they were HIV+. The study found that 90% have changed their sexual risk behavior after learning of their infection. Sixty percent used condoms more often, 49% had sex less often (not that this change is necessarily desirable or sustainable over time!), 39% reported not having any sex and 10% had sex only with other positive persons.
Another CDC study, the Young Men's Study looked at unprotected insertive anal sex (fucking or topping) among young gay and bisexual men ages 15–22 in seven cities (including Hollywood and West Hollywood) from 1994 through 1998. Thirty percent of HIV-negative men reported having fucked without a condom in the previous six months, compared with 37% of HIV+ young men who did not know their status, but just 15% of the HIV+ young men who did know they were infected. Other studies show similar positive benefits from knowing one's status, although risk behavior likely increases over time.
Besides leading us to change our behaviors to protect our partners and ourselves, another public health benefit is the fact that effective antiviral therapy reduces infectiousness if and when we do have unprotected sex with a person who is negative. We do not know exactly how much infectiousness is reduced, but we do know that for many or perhaps most people, it is not reduced all the way to zero. Nevertheless, on a community basis, it is almost certain that for an increasing proportion of people living with HIV and being effectively treated so as to minimize their HIV viral loads, transmission is substantially reduced.
The two main strategies the CDC is employing for Action Step 1 are targeted efforts to encourage people at highest risk who do not know their status to get tested and, secondly, to make testing more available in a variety of ways. A new media campaign, "Know Now," will target testing messages to very specific neighborhoods and demographic groups, based on the same sophisticated marketing analyses and techniques that corporations use to get us to buy things. A part of this campaign will be efforts to decrease stigma against persons living with HIV, which is a main deterrent to testing in many communities. The specific messages will be developed in each local community and will primarily run on radio and be used in neighborhood marketing techniques.
The effort to make testing more available will be pushing to get rapid HIV tests (such as those available for pregnancy for a long time) available and approved, initially for use by prevention organizations, HIV test centers and health care providers. This opens up the possibility of taking testing to many more places and venues, from community health fairs, to bars and sex clubs and bath houses and cruising parks, gay pride festivals, street corners and emergency rooms and clinics.
The second step is to facilitate and promote the entry into health care and prevention services, once people discover they are infected, or when they are ready and able to deal with their infection. Studies have shown that between 17% and 50% of persons who find out they are positive delay entering health care for more than three months. Some individuals, for a variety of personal, social, economic and other reasons, delay for five years or more.
Entering health care, and getting supportive social services and prevention services, does not necessarily mean starting on HAART right away. The decision as to when to start antiviral therapy remains for an individual and his/her health care provider to make, and the official guidelines are being revised to indicate the uncertainty among researchers and physicians as to just when the best time to start is. However, it is clear that getting regular health care, monitoring of one's immune system status, and treatment for other conditions that may hasten HIV's progression if untreated is associated with living better and longer, and with giving a person more control over his or her status.
The CDC will work largely with the federal agencies that administer the Ryan White HIV CARE Act programs as well as Medicaid/MediCal and Medicare to promote smoother and faster and more universal access.
The third step is to increase the number of persons who are receiving state-of-the-art care. Once again, the CDC is working with other public health service agencies, organizations of doctors and nurses, and managed care and insurance companies to establish and promote guidelines of excellent care. In addition, the CDC is developing a population based indicator survey to assess access to and utilization of care on an ongoing basis, so that attention can be called to communities and populations who do not have access to good care or do not have support to overcome barriers to utilizing that care, and so additional strategies and programs can be developed (or at least advocated!).
For an HIV infected person, getting into care is a challenge. Staying on medications for the rest of one's life is even more of a challenge, as most of us know all too well. Adherence is a problem for maintaining maximum benefit for each of us as an individual, and for reducing the chance that others coming later may have it even worse than we do.
Three recent studies show that up to 16% of persons newly infected with HIV were infected with a drug-resistant strain. This may mean that those being newly infected in 2001 start out with an infection that is more difficult to treat with our available therapies. The CDC will maintain its ongoing surveillance system to track the proportion of persons newly infected who start with resistant viruses.
The CDC and other federal health agencies are funding studies to assess the extent of the adherence problems and how strongly these are associated with the leveling of AIDS deaths after several years of steep decline. These studies are also seeking to determine the best strategies to motivate and help with adherence.
The last action step seeks to promote and maintain risk reduction behavior among persons living with HIV. This is the part that is central for many of us, especially those of us already long aware of our infection and already accessing the health care that is available to us. Many people with HIV feel healthier on HAART than we did before such treatments became available. In addition, the impression that HIV is a treatable disease, and the fact that HAART reduces infectiousness to some, albeit an unknown, degree may be leading to increases in risky behavior over time. While most people who learn they are positive reduce their behaviors that may put others at risk, a considerable fraction continue to have unprotected sex with persons who are negative or whose status is unknown.
One clear indicator of a worrisome trend is STD data from Seattle and King County in Washington. The estimated incidence of early syphilis among gay men in Seattle has increased more than three times from 1997 through 2000 (from about 60 new cases per 100,000 population to nearly 200 per 100,000). Most disturbing, however, is that the incidence rate among HIV+ gay men went from 60 per 100,000 in 1997 (same as for gay men overall) to over 1,000 per 100,000 in 1999 and 2000, a rate more than sixteen times higher than just two to three years before.
The CDC's initiative involves developing more effective programs and interventions to help positive people adopt and maintain less risky behaviors, making those programs more widely available in communities, and increasing prevention activities in HIV primary health care settings.
We have reported earlier on one of the CDC's initiatives, that Being Alive and Women Alive are participating in: the Prevention for HIV-Infected Persons Project or PHIPP. Nationally, PHIPP is conducting pilot programs of a variety of different approaches to supporting healthy, safer lives, from social marketing and media campaigns, to promoting ways for HIV+ people to find others who are HIV+ for intimacy and friendship and social support (and, yes, sex), to community forums on thorny issues like disclosure, to weekend plus-type retreats and/or weekly prevention/sex/safety-related support groups, to short-term individual counseling and assistance with other life problems, to long-term intensive individual support (sometimes known as prevention case management).
These are a start, but the input of as many as possible from HIV-infected communities is essential. We know that whereas most people who are positive want to be protective of themselves and their partners, there are also other strong needs that sometimes get in the way (such as needs for intimacy, for not having to think about HIV all the time, for being free of discomfort and rejection, for sex, for being high, for having sex while being high, for money and survival). Starting and promoting risk reduction programs is not like building the baseball stadium in the cornfields in the movie Field of Dreams: "If you build it, they will come."
Programs will only be accepted by the folks who need them if they are perceived as helpful in living a well-rounded life with HIV, including living with medication side effects, dealing with friends and family and work and money, and regaining a robust and lusty sex life, if that is among a person's needs.
The effort to turn substantial new prevention resources in our direction is not of course without its hazards. People with HIV have long been afraid of such campaigns for fear that putting the spotlight on us will lead the nasties of this country to increase discrimination and stigma, to support measures that criminalize certain sexual behavior, or even worse (in our not totally unjustified paranoid moments).
For this reason as well as the need to make the program holistic and acceptable, people with HIV must be heavily involved in the planning, operation, promotion, evaluation and oversight of SAFE and similar programs. I believe it is to the CDC's credit that at least four individuals who are helping to lead this new initiative nationally are HIV+, and out about it within the government and professional life. I am honored to be one of them, thanks to support from a number of you who helped overcome the opposition of some to having a community-based activist and sometime-loudmouth in a position of responsibility.
However, we four are not enough. For one thing, the epidemic's diversity requires the active participation of many more women, people of color overall, and gay men of color in particular. For another, whenever one works "within the system," one is inevitably pressured (sometimes unconsciously) to accept and be satisfied with the limits of what the higher-ups say can be done. I, for one, cannot in good conscience work there even for a few years without stepping back and listening to the voices and needs of people far away from Atlanta, Washington, Sacramento or downtown.
More importantly, for us to get the kinds of support we need as individuals and local communities, and to contribute collectively to hastening the end of the epidemic, we have to organize, write, develop programs, brainstorm clever messages, act as role models, recruit others, hold authorities accountable -- in all of our communities. I am reminded of slogans like "Think globally, act locally." "Let a hundred flowers bloom."
Also, this new Administration's receptiveness to new prevention initiatives, and support for the care and drug assistance and research we have achieved arduously in prior years, is uncertain. It certainly will not be there automatically, without constant vigilance and struggle.
Finally, I believe that we have struggled for several years to open up existing prevention funds to some of our needs, needs that were neglected for a long time. It is, therefore, in good part up to us to now to see what we can make of it, on our own and as partners, advocates and watchdogs.
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