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 1 - 15 (of 28 total) next
Frederick Wright, Coachella Vallely, 2013-04-27 14:37:30
Here are my 20 words not including these words."I am out as HIV and free to live, love and prosper, HIV has no power of me, yes Free."
Otis Hemmings, Bronx, 2013-04-24 11:26:25
This Idea Of A National HIV Coming Out Day May Prove More Useful Than Expected. I Think I Can Use More Exposure In Comming Out. Fresh Great Idea!
jorge, madera ca, 2013-04-16 03:34:23
HIV has been protected a such a confidential issue that medical people cant test you to help identify it. In 2011i was hospitalis for extrem high fever... doctors could not tell what it was... finally i was treated in iv with a antibacteria medication... come to think about it it possibly was the day i converted. In 2013 was my first test as poz. I normally tested twice a year but since involve with my former partner who was hiv pos for 6 years but never told me... i didnt feel the need to test
Carolyn L. Massey, Laurel, 2013-04-12 16:22:21
Michael, count us in. We are Older Women Embracing Life, Inc. (OWEL) pronounced "Oh Well".
MIchael Stacey, Jefferson, 2013-04-11 18:45:44
I could not agree more. What can I do to help?
kenny ebron, balto city, 2013-04-09 22:09:33
I would love to work with you are I been living with HIV for over 22 years every body know I have hiv because I tell everybody and empower the people.
BraveWarmSun, Veracruz, 2013-03-28 16:48:19
I would love to be part of a permanent testimonial by all people, anonymous or open, who are surviving hiv disease. Perhaps a 20 word or less message in one's own handwriting which becomes part of something permanent yet mobile. Remember the aids quilt? It sort of evolved and moved around, raised consciousness and helped us heal.
chgorose, Chicago, 2013-03-24 12:59:00
I agree that we need a National Coming Out Day, but it also needs to be taken into consideration what the repercussions of this may be. I've already lost my family because I told them I was positive; my children know my status, but really no one else does, work, associates, etc. due to the fear of losing my job, violent retaliation,etc. Because of this, I really doubt that I would participate in this.
Tom, , 2013-03-16 16:19:01
Oh Karen, you really do need to get a grip. Did he remove the condom behind your back? Did he poke a hole in it? Were you held down and forced to have unprotected sex? Were you too drunk to consent? Did you somehow miss 30 some years of HIV warnings? Did you think you were both virgins? Did you even think to ask? I don't think that I should have to be treated like a leper in my community so that Karen can retaliate for her STD without ever having to take responsibility for herself.
Rick, North Carolina, 2013-03-15 01:34:50
I have returned from NYC to the small town in North Carolina where I grew up. I just finished a conducting a discussion group (a few hours ago)at a black baptist church here. The topic was AIDS in the black community so I revealed to the minister, people I grew up with, and my parents friends and neighbors that I am a long term AIDS survivor. I did this so that we could have a discussion regarding how much more work needs to be done in the black community to reduce the spread of AIDS.
Frederick Wright, Coachella Valley, 2013-03-13 13:30:14
Karen, please forgive us men for being prideful, over egoed and just plain stupid. I have been dealing with HIV for some years in begging many community men to test prisoner in and out of the system, ten years ago begged many men to Open up HIV rapid testing to the consumer to help woman test their boy friends for truth. Yes, and family members have stated to me 'How does it feel to get what you deserve." You see their are lots of men that have a hand in the mis-truths about sex, I forgive....
Karen Bateman, , 2013-03-11 10:54:11
I wish the guy who infected me had "come out" & been honest about his status. It bothers me the community supports de-criminalization of people who lie & intentionally harm others. I don't buy that the fear of prosecution causes people to stay in the closet.If you're going to come out to anyone, it should be the one you supposedly love & care for. People who purposely inflict this deserve to be prosecuted. He told me to get over it, "Everyone is going to die of something." He will die in prison.
Paul Feldman, Seattle, 2013-03-07 16:35:21
Kaplan's call for a National HIV Coming Out Day without guaranteed issue, community-rated health insurance is unthinkable for many who work outside of the AIDS industry.
But soon, the healthcare game changes with Obamacare. So maybe this will fly, since employers will no longer have financial justification to discriminate against PLHAs.
Poz folk will no longer increase employers' insurance costs. This is huge. And maybe, soon, more of us can come out.
Raymond Hilerio, Bethlehem, 2013-03-06 00:06:53
If I was to come out and tell the people in the community that I have aids, I may as well commit suicide. I'm alone here and don't know anyone who has it. This is a very conservative area and it's very closed minded. I tell you this, because it seems as if you think that all one has to do is go out and tell that you're gay and have aids.
richard tousant, san marcos, 2013-03-05 12:18:51
comments 1 - 15 (of 28 total) next
i would love to tell the whole world im hiv poz my family already accepts me now i just want the whole world to know
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