Living with AIDS/HIV
Friday, December 1, 2006; 12:00 PM
In the 25th year of the AIDS/HIV epidemic, treatment has improved, but the issues of social isolation and, often, economic instability remain.
On Friday, Dec. 1 at noon ET, Post reporter Jose Antonio Vargas discussed the Post's living HIV quilt and his story "A Circle of Strength," which profiles the Ujima Project, a support group for HIV-positive ex-convicts and addicts.
The transcript follows:
Jose Antonio Vargas: Hi,
Thank you for joining us. This is the third in a series of four articles about AIDS in Washington; you can find the first two stories on www.washingtonpost.com/aidsquilt. On that site is an interactive online quilt of 25 District residents and AIDS workers living with HIV, some with AIDS. The question that's been nagging me all year is: What does the AIDS epidemic look like in the District of Columbia? Now we can say, "Go to the quilt."
New York City: As someone who was a teenager when AIDS first became known, and as someone who lived a very robust heterosexual life, now 40 I still have never known anyone who knew anyone who died of AIDS (scratch that, I knew of 1 actor when I worked for Paramount).
My question: Since HIV/AIDS kills a fraction of those with cancer and heart disease, and is primarily a sexually transmitted disease between homosexuals (with exceptions of course) and drug addicts, do you think that the overwhelming attention paid to this disease is mostly political in nature in the U.S.?
Jose Antonio Vargas: This an interesting question. Often, AIDS is pinned as a "gay disease" or a disease of drug addicts. But if you check out the online quilt, you'll see that various people from all walks of life are affected -- men and women, gay and straight and transgender, of all races, of all ages. Gary Isler, the facilitator of Project Ujima, the group I wrote about in today's paper, says the AIDS epidemic in the District is like "a quiet Hurricane Katrina" in the African American community. To think of HIV/AIDS in the U.S. as a political issue misses the point, I think. The bottom line is, HIV/AIDS in the country greatly affects already marginalized people, and we need to ask why that is.
Washington, D.C.: Mr. Vargas,
I really enjoyed your story on the Ujima group. Do you plan on keeping in touch and doing another profile of them?
I am distraught with the AIDS epidemic facing Washington, D.C. We need more groups like that and more stories than on just World AIDS Day to talk about this pressing matter.
Jose Antonio Vargas: Thanks for the question -- and for reading the piece.
Yes, I do plan to keep in touch with the group: Kevin, Gary, Stanley, Lee, Russell, etc. It'd be really interesting to see how they move forward -- who else shows up to the circle, who drops off, if any.
And, yes, the epidemic in the District is, in the words of Congresswoman Eleanor Holmes Norton, "out of control." And we need to figure out why.
Washington, D.C.: Where can I get tested for HIV? I've tried calling Planned Parenthood but am always put on hold.
Jose Antonio Vargas: Thanks for the question. There are many places to go. I'd start with the Whitman-Walker Clinic, the Women's Collective, Metro TeenAIDS, etc. You could also ask your physician.
Upper Marlboro. Md.: Thank you, Mr. Vargas, for another insightful article on the lives of men who live "on the underside of Washington, D.C." I would like to speak with Mr. Isler about another support tool that I believe would be effective for these men, who are powerful in their own right. How would I do that?
Jose Antonio Vargas: Thank you for reading the piece. It's our job here in the Washington Post to not only write about the powerful but also the powerless. As far as speaking to Mr. Isler, you can call Family and Medical Counseling Service, Inc. and ask for him.
Northeast Washington, D.C.: What's the status of the plan to test everyone from womb to grave for AIDS/HIV in the District?
Jose Antonio Vargas: What the question's alluding to is the unprecedented effort, announced by the city's AIDS office, to get all District residents between the ages of 14 to 84 tested for HIV. That effort was announced in June. Three months into it, Marsha Martin, the city's AIDS chief, said that out of 7,000 people who got tested (in community health sites, clinics, etc.) 3 percent tested positive. That's double the national rate.
Anonymous: From reading the "Being a Black man" series, there appear to be many parallels between many of these men and some featured in the series. Was it a thought to incorporate this article in that report? Did you delve into some of their histories, and note the parallels of unemployed males, uneducated males, etc.?
washingtonpost.com:" Being a Black Man"
Jose Antonio Vargas: Please check out The Post's groundbreaking and outstanding "Being A Black Man" series.
As it happens, one of the key editors in that series, the indefatigable Marcia Davis, is also my direct editor. (I can't say enough about this woman.) Earlier in the year, we did talk about perhaps including this article in the series but elected not to do so.
As for the history of each men, I made sure I got to them as much as they allowed me to. I hung out with Lee a few times -- walking around in his old neighborhood in Ledroit Park, eating at Ben's Chili Bowl, riding the B2. Gary Isler can tell you how many times I bugged him on the phone, in his office, on Thanksgiving Day.
The Quilt: The positive attitudes that the people display despite having this potentially fatal disease is inspiring. I hope to be that optimistic when I grow up. (smile) Best of luck to them all.
Jose Antonio Vargas: Thanks for the note. This is precisely why we elected to call it "A Living HIV Quilt." AIDS quilts are usually of dead people. But the men and women on the quilt are alive --they're struggling, but they're alive. And that's something that I think people need to see and hear.
Buffalo, N.Y.: It seems to me that at some point people are going to have to start understanding that HIV/AIDS is nothing to play with. Why do you think there are still so many people with that "It won't happen to me?" attitude?
Jose Antonio Vargas: Great question. Anyone ever read "And the Band Played On," Randy Shilts' groundbreaking book on AIDS in the 80s? Shilts was a reporter for the San Francisco Chronicle, where I worked before coming to The Post, and I studied his book carefully before diving into my reporting. Then and now, this attitude of "It won't happen to me" is prevalent -- and extremely dangerous. I can't tell you how many HIV-infected D.C. residents who I've interviewed for the past year or so had that attitude.
AIDS marathoner: I trained for a marathon through the AIDS Marathon group this year and part of that entailed my having to raise funds. I did various things including getting my own webpage.
I got obscene phone calls. I didn't put my personal info on the website but one persevering person googled my name and I am on the roster of my employer which has a website and through the chain of info, he got my direct dial at work and in a series of anonymous voice mails, characterized AIDS victims and how stupid I was to solicit funds. I got nasty emails too.
I know this doesn't answer your question but now that I am on the subject, one guy in our group raised over $20,000 in donations for the life needs of AIDS patients to run in the marathon. You would not believe how tirelessly and selflessly the AIDS trainers and volunteers and employees work. And the people who sign up to run--how hard they work. These aren't athletes by any means and they take time from their families during the better of the year to run a marathon -hopefully- so as to give something in return for those who wrote checks.
It's too bad AIDS had the misfortune not to be a Playstation, A Tickle Me Elmo or a Beanie Baby. Otherwise, we would be standing in line like the morons elsewhere, to be the first in line to give to the cure. But then we can't parlay that kind of money spending into a profit on Ebay.
Children are dying in droves of AIDS. That won't prompt people to stand on their heads to find a cure but my raising money to run a marathon will provoke ambition enough for some homophobe to find my phone number to leave me hate voicemail. And when I relayed the story, more often than not, people laughed.
So that, for me, is where AIDS stands in DC.
Jose Antonio Vargas: I just wanted to post this comment.
Southern Maryland: What is the breakdown of AIDS patients in the U.S. who acquired AIDS through contaminated blood transfusions as opposed to those who acquired it through indiscriminate sex and illegal drug use?
Jose Antonio Vargas: I don't have the breakdown as it relates to blood transfusion. (Although one of the D.C. residents on the quilt, Theresa Holt, told me a tragic story about how she got infected because she had a blood transfusion after her doctor, she said, punctured her kidney.)
The transmission breakdown, according to the Centers for Disease Control and Prevention, is as follows: 22 percent through injection drug use; 45 percent through unprotected gay sex; 27 percent through unprotected heterosexual sex; and 1 percent unknown/other.
North Branch, Minn.: It's really hard to absorb the loneliness of these men's lives. Did any of them confide in you that they just feel as if they don't have a place in the world? I can see that their connection to each other through Ujima is made more valuable by this reality.
Jose Antonio Vargas: Thanks for the question.
Yes, there is loneliness. I remember one particular moment. It was a Wednesday in early August, and Gary Isler, the facilitator, was talking about Atripla, the new once-a-day HIV medication. Kevin, out of nowhere, told the circle: "I don't wanna hear nothing about no medicine that can keep us going on and on and on and on! Take this [expletive] - excuse me - out of my body! Find somethin' that can get it out!"
Come a long way...: A few years ago the belief was you got AIDS/HIV and you died. Period. These people have been living for years with this disease. It's like cancer, but unfortunately, it has the stigma attached to it of being sexually-transmitted. I think if we could shake that, somehow, there would be more movement to find a cure.
Jose Antonio Vargas: This is a very good point, which is why we felt strongly about an online quilt that would put a face to the epidemic and allow people to see the reach of this disease. Everyone's affected. And, yes, the stigma, to my surprise, is tremendous. And the stigma is different for different people, which is the topic of a piece I'm writing for Outlook, The Post's Sunday editorial section.
Charlotte, N.C.: Seriously, why should we feel sorry for this group of men? Their actions led to their imprisonment and current health status and now we, the taxpayers, have to foot the bill.
Jose Antonio Vargas: Thanks for the question.
My goal, as a journalist, is to report what I've observed in the course of my reporting and get out of the way. It wasn't my attention to feel sorry or to pity the men of Ujima; they are where they are. But it is my job to put their situations in context.
Bryn Mawr, Pa.: You cite the transmission breakdown, according to the Centers for Disease Control and Prevention, as follows: 22 percent through injection drug use; 45 percent through unprotected gay sex; 27 percent through unprotected heterosexual sex; and 1 percent unknown/other. That's translates to 99% of AIDS cases as being preventable. So why all the fuss and why should I care?
Jose Antonio Vargas: A very good point. Which makes AIDS reporting, at least in my mind, fascinating and also frustrating. Susan Sontag once wrote that AIDS is a disease fraught with so much meaning. And stigma. It seems that there's plenty of blame to go around. As in, "How dare you get HIV? How come you don't know any better?" But the fact is, there are at least 40,000 new HIV infections in the U.S. every year, according to the CDC. (Some say it's more like 60,000.) And a fourth of those infected don't know they're infected. That's why everyone should care.
Manassas, Va.: Thank you for this story. It said that you reported it for six months. What was that like hanging out with the guys? How did you earn their trust?
Jose Antonio Vargas: Thanks for reading it.
It was really tough at first; I would go to the meetings, listen to the conversation and no one agreed to talk to me afterwards. That went for a few weeks. That's why trust is key here. Not just earning it but keeping it. And showing up, week in and week out, helped a lot. At one point, Gary Isler, the facilitator of Ujima, greeted me with: "Here's Vargas again. He's never gonna go away." What was also important is that I saw the men as real people, as human beings, not caricatures. And also important is that I asked the tough questions and that they answered as candidly as they could. I remember a particular moment, in the men's room of all places, when Kevin, one of the guys in Ujima, asked me: "Why do you care so much about this?" And I remember telling him, "How can I not?"
Southeast, D.C.: Why in this world of vast wealth are we not doing more to combat HIV/AIDS. Medication exists to make life with AIDS liveable. So why are the drugs not available throughout the world for free?
Jose Antonio Vargas: This is a fascinating question, and I wish I had an answer.
San Francisco, Calif.: When will we see San Francisco Values (condoms on demand, needle exchange, and no-babies-born-with-AIDS) spread to the rest of the USA? Not adopting these life-saving measures seems like another way of ensuring a long-reaching Katrina diaspora among African-Americans in the South, where HIV/AIDS is spreading most rapidly now.
Jose Antonio Vargas: An interesting point. San Francisco is far and away one of the most progressive cities when it comes to HIV/AIDS prevention and care. (I lived in San Francisco for a few years.) But then you also have to recognize that San Francisco, politically and socially, seems almost isolated from the rest of the country. The "values" that San Francisco have aren't considered "values" in other parts of the country. This is where politics, as one writer suggested, plays a part.
Cheyenne, Wy.: I am just stunned by the "not in my backyard comments" from several chatters who would just banish those with AIDS to their own private hell. Is anyone's life really that blameless?
Jose Antonio Vargas: I've been hearing various "not-in-my-backyard" comments all year. And my take on it, as it regards writing stories about HIV-infected District residents, is to write about them as human beings and not see them as "The Other," which is the easy thing to do.
The black community: Why are the cases rising so quickly in the African-American community?
Jose Antonio Vargas: A great question -- and topic that really needs not only further discussion but also further action. There's a tremendous amount of stigma in the African American community in general. AIDS is just not something to talk about. There are exceptions, of course; some black churches in the District have AIDS ministries. But clearly not enough is being done. On Washington Post Radio, where I spoke about the article and the quilt this morning, Rep. Eleanor Holmes Norton called in and said she's starting Town Meetings to get the greater black community in the District involved -- and educated. You can go to www.norton.house.gov.
Quilt participants: How did you find people who were willing to do this? Are all of them, except the guy who said he was a drug user, gay?
Jose Antonio Vargas: Thanks for the question. This quilt is very dear to me; and thanks to the kind and tireless folks at washingtonpost.com (Tanya Ballard, Nelson Hsu and Jenn Crandall) for working on it with me.
It was tough to find 25 people who are willing to have their face and names on the quilt. And we wanted to make sure that the quilt represented the epidemic in the District. That means it's not just white gay men or straight black men or straight black women, but also someone who's Latino, who's Asian, who's transgender, etc. The quilt, I can confidently say, represents HIV/AIDS in the District. And it includes 23-year-old Joshua Murray, who was born with HIV.
Jose Antonio Vargas: Thanks for all the questions; I wish I could answer them all.
And please be sure to go to www.washingtonpost.com/aidsquilt. The site also features previous articles from The Post's archives as it relates to HIV/AIDS in the District.
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