February 25, 2013
Stepping Forward About HIV Status
by Michael Kaplan
The president and CEO of AIDS United makes the case for a National HIV Coming Out Day.
Last month I attended a summit about raising HIV/AIDS awareness in the gay community. It was a spirited discussion, as we all sought to determine where we might best invest our efforts to have the most impact.
Much has changed in this world since I first tested HIV positive in 1992. Today's extraordinary treatment options have far fewer side effects and less toxicity than when I was on AZT back in the early days of the epidemic. Today, more HIV-positive people are living longer than ever before due to treatment. For many of them, death is more likely related to smoking, heart health or a cause other than the virus itself. Today we know that early treatment is not only critical to extending and improving the quality of life of people living with HIV, but can reduce the likelihood that they will transmit the virus to their sexual partners by 96 percent!
Yet for all that change, some things remain incredibly the same. Our greatest unchanged reality continues to be stigma. Today, while CDC estimates over 1.1 million Americans living with HIV, there are still far too few warriors who are out with their status. Most keep it close to their chest, fearing that disclosure may result in rejection, discrimination, a lifetime of loneliness, or even prosecution.
We've tried to slice and dice awareness of this disease, looking at communities one-by-one. Zeroing in on the disproportionate impact of HIV among men who have sex with men, among African Americans, among youth, among those in the the U.S. South, and among so many other communities.
We have created National Black HIV/AIDS Awareness Day (Feb. 7), National Women and Girls HIV/AIDS Awareness Day (March 10), National Native HIV/AIDS Awareness Day (March 20), National Asian & Pacific Islander HIV/AIDS Awareness Day (May 19), Caribbean American HIV/AIDS Awareness Day (June 8), National HIV/AIDS and Aging Awareness Day (Sept. 18), National Gay Men's HIV/AIDS Awareness Day (Sept. 27), National Latino AIDS Awareness Day (Oct. 15), and the mother of all awareness days, World AIDS Day (Dec. 1).
Yet much of what all these days ask of communities is to simply raise their awareness and concern about AIDS, and while important, is that enough? They allow HIV/AIDS to remain an abstract thought for the vast majority of communities, and leave other communities wondering when their day will come.
A national awareness day focusing on gay men and HIV, for instance, will do far less to bring home the realities and awareness of HIV among gay men than personal discussions with my gay friends about my life as an HIV-positive gay man. The same, I think, would apply to my life partner. His mom will be far less moved by a national day focused on blacks and HIV than her son's own coming out with his status.
What we really need is a National HIV Coming Out Day.
We need a day where HIV-positive individuals -- straight or gay, black or white, old or young -- step forward about their status. We need a day that can really raise awareness of HIV, put a face to the virus, and help move the dial in getting others to decide to be tested or engaged in care.
We have the tools to end the epidemic. But stigma remains a barrier to our success. It is stigma that keeps too many from wanting to know their status, to face rejection, discrimination, or possible prosecution. It is stigma that keeps many more in fear of disclosing their status, and thus avoiding getting the HIV care they need.
Yes. We need a National HIV Coming Out Day -- to create a movement of people living with HIV that changes the national discourse.
It will take time. And the unfortunate reality for some will be that it's just not possible right now. It may jeopardize their jobs, their relationships and so much more. But where we can, we must. As more and more step over that hurdle, come out with their status, and talk with others about what it means to be living with HIV, the more we can shift those possibilities.
We need a National HIV Coming Out Day. A day where we face the reality that America is living with HIV, that our friends and family need to be tested, that those infected can live better through treatment, and that we can get to an AIDS-free generation.
Michael Kaplan is president and CEO of AIDS United. This article was originally published on The Huffington Post. To read a response by LGBT law professor Ari Ezra Waldman, click here.
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comments 16 - 28 (of 28 total)
Cheryl L. Dagy, Macedonia, OH, 2013-03-02 14:54:32
Michael, Thank you for voicing this, and I totally agree. As a hetero, white female positive for over22 yrs and working for the govt I find that while my employer provided reasonable accommodations for me, they frown on the idea of me sharing my status with the office. While I've expressed to my leadership that doing so would lessen the stress of living 2 lives and leaving everyone wondering, they strongly disagree - I think they see me as a liability if my peers go into panic. I'm with you!
PozinPDX, Portland, OR, 2013-03-01 13:50:10
I get the stigma-reducing power an HIV Coming Out Day could have, but when I look to the news and still see people being arrested for having sex while HIV positive (everything from reckless endangerment to attempted murder) it freaks me out. Many of us have lived with HIV a long time, and there are a lot of skeletons in our closets. It terrifies me to think how some might react to my coming out as HIV+- and stigma is the least of my concerns. Perhaps focus such a campaign on the young/newly +.
Gabrielle, Douglasville ,ga, 2013-03-01 06:31:18
It's about time!!. I have been complaining about this for years;we do NOT need separate days for hiv..We need awareness for EVERYONE..EVERY DAY!!!
Nigel Priestley, Boca Raton, 2013-02-28 21:02:19
I think Michael Kaplan is spot on !!! I have been HIV positive since 1985 and feel blessed to have out lived many of my peers. I have always been out with my status and will tell anyone who asks. Silence quietly promotes ignorance but being "HIV OUT" demands compassion !!!
Debbie, chittenango, 2013-02-28 14:31:31
I totally agree with having a Coming Out Day. I have been positive since 1995 and everyday feel like I'm living with a lie. It would be wonderful to be able to go about my daily living without feeling like I'm always hiding a secret.
dbearphx, Phoenix, 2013-02-28 13:42:09
I too have lived in phoenix for a long time & its true. No one talks to me online & its so hard to make friends. I truly feel that i'm in a minority of the majority. I'm cute dangit but no one looks to me as being friend material much less sex because i'm 'damaged goods'.
We need to start with more acceptance of each other and maybe this coming out day (which many still hide) would help. I don't know but something needs to be done.
Steve Ernnez, San Francisco, CA, 2013-02-28 12:54:15
Tell me when and I will be there as I have for over 30 years, and in my arms I bring the memory of many who did not make it to this day.
Deborah, San Diego, 2013-02-28 10:34:10
I am a 61 year old woman with HIV/aids and I couldn't agree more. For me, the most stigma comes from myself with the hiding and covering up. Every disclosure I've made has ended with good results. I think telling my story could help, especially with the older straight folks who think this is not about them. Having a coming out day would provide the structure to talk about our experience with HIV, That doesn't come up in casual conversation. Somebody print the t-shirts, I'll buy and wear one!
Frederick Wright, Coachelle Valley, 2013-02-28 07:40:59
I understand the pain of facing the theory of HIV/AIDS inside and to the community. This is most difficult and I do not want to make it sound easy for there are two sides of the fence and when the bell is rung, one cannot take it back. The problem I have with living in shame and guilt daily to imprison me for when I go back into the fear closet to put on the mask and pre-lies each day to protect myself for survival, it seem like darkest is at every turn. I face it one day at time with my faith
Tyler, , 2013-02-27 10:24:07
Azguy, I can sympathize with the isolation you must feel, but don't let that create a delusion that POZ people in the gay population have more or less acceptance. Most neg gay men are close to stoning the large minority of their poz peers. Check out ANY mainstream gay site's treatment of the disease to catch a glimpse of the situation. Human nature is that we react with more hostility to things that we fear, and every neg gay man lives in constant terror of HIV
Alex, Manchester UK, 2013-02-27 03:37:55
I've been out about my status for around four months, after living with HIV 'in secret' for three years with only close family and friends knowing. I am a strong believer that by being open and showing there is nothing to be ashamed of stigma can be broken down. I don't fully agree that the gay community is accepting, if anything they are more fearful as they're constantly reminded about how much more of a risk they have aquiring the virus.
azguy, Phoenix, 2013-02-26 15:02:52
HIV positive people in the gay population are more of the majority and as there are so many it is easier to come out, being straight with HIV I feel like I am a minority of a minority, and among the straight population I feel there is less acceptance. Most of my family doesn't even know my HIV status, for fear of rejection/alienation how could I expect others to be any more accepting?
Michael Kaplan, Coachelle Valley, 2013-02-25 19:39:42
comments 16 - 28 (of 28 total)
Wow, This is a new face of AIDS United (The old National AIDS FUND) to me, in this leadership of one called Michael Kaplin and very photo genic too. I can remember in my early faith works where I would see pictures of my Brothers and Sisters in Africa with the biggest smiles of freedom in a parade to announce to the world that they where POZ, again in the still picture of big smiles of freedom. Yes, not angry or sadness of AIDS, but the coming out to parade down their village in Happy Unity.
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