At www.TheBody.com, we've been lucky enough to speak with many people with HIV/AIDS, HIV advocates, and health care providers through the years. We've asked them some important questions and compiled pages of answers. Here are some of those answers.
Tips on Dealing With an HIV/AIDS Diagnosis
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Juana Clarke
Waterbury Hospital
Waterbury, Conn.
Getting diagnosed with HIV doesn't have to be the end of your life. That's the first thing. There are medications; there are things that you can do to save your life. You can have a very productive life. You can have a good life. But you have to pay attention.
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Again, this isn't about blame or anything like that. If you want to have a good life, you can have it. You're going to have some limitations on that, obviously. You're going to have to work for it.
Right now, in our clinic, the majority of people who have died have not died from HIV disease; they died from chronic diseases. It's the same thing to me as women who refuse to have a mammogram, because it squeezes them [their breasts]. Give me a frigging break! It's a one-minute thing! This is about your life.
I think it's the same thing. HIV is more becoming something of a chronic disease, so you have to be just as vigilant as if you have high blood pressure or diabetes or something else. You have to pay attention, but you can save your life. It isn't the end.
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If You Were in Charge of World AIDS Day, What Would You Do to Make it a More Meaningful Day?
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Carrie Broadus
Executive Director, Women Alive
Los Angeles, Calif.
I would hold nationally broadcast one-hour town hall meetings between policymakers, community stakeholders and health departments to discuss the impact of HIV and the role all of us play in combating the disease.
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What Is the Craziest Myth You've Heard About HIV/AIDS? (Updated)
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Abraham Calleros
Milwaukee, Wisc.
Diagnosed in 1986
The craziest thing I've ever heard, as far as the HIV and AIDS, is that if I get infected I don't have to worry about anything. Because now I'm infected, so I can still have sex with somebody that's already infected. And I keep trying to tell people, "Nope. That's not the way it works." Because now we're looking at possibly having superinfection.
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What Do You Think Is the Best Way to Fight HIV/AIDS Stigma?
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Josephine Y. M. Kong
Hong Kong AIDS Foundation
Hong Kong
I think that a fundamental message should be sent that everybody -- no matter if they have HIV or not -- has basic, equal human rights. Even if you have the virus, you still enjoy the rights. It's just basic human right to enjoy public health, to enjoy not being discriminated against because of their medical status. I think this is important.
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Everybody can use the excuse oflimited resources, or whatever things, to expel you from public health, or from social service. So I think the advocacy for human rights is very fundamental in fighting against the stigma.
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What Message Do You Want to Send to the World About HIV/AIDS?
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Yvette Ogletree
Kemet Coalition
San Diego, Calif.
Diagnosed in 2003
That HIV does not discriminate, that it affects all of us, whether or not you're infected. There is someone in your community, in your life, in your family, that has been touched by HIV. So, just to think about that and keep that in mind.
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Tips on Telling Others You're Positive
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Rafael Abadia
Palm Beach Gardens, Fla.
Diagnosed in 1993
I couldn't tell my parents over the phone. I knew I had to fly to Puerto Rico and let them know.
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So I had to prepare myself mentally for that. So that's what I did.
I flew to Puerto Rico. I had lost a lot of weight, so I made sure to wear a lot of baggy clothes to try to cover my illness. I was really concerned about how they were going to take it. They're extremely religious, Christian fundamentalists, so I knew that was an issue. It was an issue of me being gay. I didn't know what to expect. I prepared myself mentally, just in case I was going get some rejection. Then the day came, and I sat in my parent's living room; my mom was in the kitchen. I looked at my dad, and I said "Dad, I need to speak to both of you. It's very serious." He called my mom, and my mom just kind of ignored him, she didn't want to come. They knew something was gonna be up [laughs].
My dad raised his voice, and said to my mom to come, that I had to speak to them. OK, so the three of us were sitting in the living room, and I told them that I had AIDS. I told them I was taking some medications.
My dad is what I like to call a true macho Puerto Rican man, who I've never seen cry. He ran into his bedroom, crying -- like, really, really crying. And I ran after him. I grabbed him and he put his head on my shoulder and we both cried. To my amazement, they accepted me immediately. I thought they were going to put away the spoons, the cups, because I've heard horror stories from other people. But no, from day one, they accepted me, and they were there for me. So, I've been very blessed, with having a very supportive family.
What would you advise others to do, when they're disclosing their status to their family or loved ones?
It's really individualized, because I've met so many people in different types of situations. I've known of people with families that completely shunned them and do not speak to them anymore. So I'm very blessed to come from a very loving family. It's easy for me to tell everyone, because I was lucky to have that support.
What I recommend someone do is to really seek some professional help. See a therapist, a counselor, who could sit down and really guide you and prepare you for whatever happens. It's a very individual decision. You need to be ready to expose yourself to telling some people about your status because some people react differently. I've had many, I even lost friends, people who I thought were my friends, but once they knew of my diagnosis they completely stopped talking to me, even within the gay community, which was my biggest shock. But it happens.
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Tips on Dealing With an HIV/AIDS Diagnosis
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Jack Mackenroth
New York City
Diagnosed in 1990
I would definitely say, first of all, take a deep breath. Don't freak out too much. There's a lot of information out there.
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Then I would suggest meeting with a doctor, regardless of what the next steps are. But I think you need to form a relationship with a doctor. Then get your blood work done. Pay close attention to your blood work with the ultimate goal of getting on meds if you need to and working on an undetectable viral load. That's very key. That's really worked for me.
Read more about Jack >>
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What Is the Craziest Myth You've Heard About HIV/AIDS?
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Antionettea Etienne
New York City
Diagnosed in 1997
The craziest, most outlandish myth that I've heard about HIV is about a Hispanic person going to a santera to take the virus out of their body:
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The smoke of cigars being blown on them and chicken blood being splattered on them and them lighting candles and stuff.
But I understand why a person of Latino descent would do so, because that is also part of my culture. They felt that brujer?a -- which is like witchcraft -- would help them get rid of HIV, but being a knowledgeable person in this field, I know that that would not work.
Unfortunately, because of that person's strong belief, that person died in the Bronx about seven or eight years ago, splashing some oil on candles and stuff: The candles caught on fire, and she got trapped off and was killed.
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HIV Experts Reveal When and With What HIV Medications They Would Start Treatment
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Martin Delaney
Founding Co-Director, Project Inform
San Francisco, Calif.
If I knew I was infected, I'd try to start treatment the next day. But even if it was a week later, I would do that, because the evidence has really shifted.
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It's really accumulating now to the point that says earlier treatment is the best way to deal with this disease, because most of the damage of HIV is really done in those first few months. After that, people go for long periods where they're relatively stable. But that underlying damage has been done and the patient is going to pay the price for it sooner or later down the road. So I think the best thing you can do is get into treatment and try to stop that as quickly as possible.
If you didn't start early and you just happened to get tested and you think you were infected a couple of years ago, what CD4 count would you start treatment at?
I wouldn't base it on the CD4 count anymore. I would base it simply on the fact that I was positive. Unless I had a spectacularly high CD4 count and naturally controlled virus -- meaning undetectable despite no use of treatment -- if that were the case, maybe I would delay treatment. That would mean I'm one of those what they call elite controllers. But the people are rare and few and far between.
For most other folks, the right answer, I believe -- and this is just my personal belief, of course. I'm not recommending anything for anybody else -- but my personal belief is people ought to start treatment simply based on the fact that they're HIV positive.
Just to clarify: What do you mean by high CD4 count?
In the context I was referring to, I was talking about 1,000 or above.
What would be your first choice of a regimen?
The standard first choice these days is something like Atripla [efavirenz/tenofovir/FTC], which is a simple three-drugs-in-one pill. I'm not sure, though, that it's the least toxic regimen out there.
If I had the choice myself, I would probably start with the new drug, the integrase inhibitor Isentress [raltegravir] because everything I've seen suggests it's both the most potent and the least toxic drug that we have. At least temporarily, I'd couple it with Truvada [tenofovir/FTC], which is a two-drug combination that's probably the safest of its type.
But I would continue to watch carefully, because there are studies underway now that are looking into the possibility of using just two drugs of the new generation. Two drugs that have high potency and very low toxicity. We don't yet have all the data we need to do that, but it's coming soon. So I'd start with the Isentress and Truvada and then I'd watch.
Would you worry about metabolic side effects?
That's exactly the reason I would choose what I did. There don't appear to be metabolic side effects with Isentress. It has no apparent effect on cholesterol levels, which is really sort of at the heart of the metabolic effects. That's precisely why I would choose it. Almost anything else that you choose, like a protease inhibitor or even the non-nucleoside [NNRTIs] like Sustiva [efavirenz], they do have an effect on cholesterol and the metabolic effect.
One protease inhibitor that doesn't is Reyataz [atazanavir]. But that's only if you use it without the booster drug ritonavir [Norvir]. Unfortunately, to get it to work well, you really need to use ritonavir with it.
There are some studies going on, or starting soon, that are going to combine Isentress and Reyataz without the booster. Those will be very interesting to watch because there you'd have two drugs that don't have metabolic side effects.
Would you take any additional vitamins or supplements if you were positive?
It somewhat depends. There's a lot of growing literature these days that suggests that vitamin supplements are not having the effects that people had hoped on heart disease and other factors. There had been a lot of hope that it would affect cancers and heart disease and diabetes. The long-term data is not supporting it.
But it comes down to your diet. If you eat a good diet and you take care of yourself, then I don't think the supplements are all that necessary. But if you don't, then they're probably better than nothing and then I'd consider them. That's about all I can say on that.
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What Three Things Would You Advise President Barack Obama to Change Now That Would Make a Difference in HIV Prevention and Treatment in the United States?
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Cornelius Baker
National Policy Adviser, National Black Gay Men's Advocacy Coalition
Atlanta, Ga.
The first thing that I would advise President-elect Obama is that we need a senior leadership person who will have crosscutting authority to ensure that agencies are not only coordinating and planning with each other, but that resources are being allocated appropriately to HIV services.
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The second thing that I would say to him is he has to be visible. What our communities have lacked for a long time now is a visibility in the United States that really can inspire our communities to believe that we can accomplish great things against the AIDS epidemic, and we need that. We need that from our commander-in-chief, but we also need that from our highest elected officials in this country.
Then, lastly, what I would say is that the president needs to believe and he needs to think boldly. If we're ever going to have a cure and a vaccine, it will require leadership that can envision an end to the HIV epidemic. So his national AIDS plan has to have that as its starting point, but we need to see that visionary leadership every day.
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What's Your Advice to HIV-Positive People Looking for Love? What's Your Experience Been?
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Bernard Jackson
Youth HIV Prevention Specialist, The Northern Virginia AIDS Ministry
My wife passed away in '99 when I was diagnosed. That's when I found out she contracted the virus from her ex-husband.
Found love again? I think I found how to love myself again.
Dating, for me, is not on the front burner, as they say. It's so very important to have that significant other in your life, but I've just chosen to do what it is that I'm doing right now and focus on keeping my head in the right place.
Relationships can sometimes cause us to get a little distracted from what we're supposed to do. But my relationship with my wife was one of the greatest things that I think I've ever been blessed with. And I'm still kind of stuck on her. Even though she's not here physically, I think spiritually, she's still very much a part of my life. And I'm still just happy with the memories of her.
I'm not doing any dating right now. I have had a few friends that I would go out with, but disclosure sometimes can be an issue. If I know that that relationship is not going where I want it to go or is not going any further, then no. I haven't found that type of love, but I definitely am loved. |
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What Do You Think the History Books Will Say About the HIV Pandemic 100 Years From Now?
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Julie Scofield
Executive Director, National Alliance of State and Territorial AIDS Directors
The question of how we're going to look back on the epidemic 100 years from now, after we've cured the disease, is a really interesting one to ponder. I actually think when we look back at it, we'll understand that in really tackling this incredible disease, we had to look beyond the virus itself; we had to look beyond the particular individuals and communities that were affected and look at the context of people's lives and the other aspects of what is going on in our society and culture that put people at risk for the disease.
At the end of the day, I hope we'll be able to look back and say we made progress at conquering racism in our country because we were fighting the AIDS epidemic, that we made progress fighting homophobia in our country because we were trying to end the AIDS epidemic. I think the same is true around issues of sexism and the empowerment of women in our country. I think there are so many other issues that, with any luck, we'll say that we really improved the context of people's lives. We tackled issues of substance use and stigma and all of those other conditions that put people at risk. I would be very proud to look back and say that we made a difference in that way. |
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What Is Life Like for HIV-Positive Gay Men Around the World?
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Paul Semugoma, M.D.
Uganda
I'm Dr. Paul Semugoma. I work in Uganda with KULHAS, which is Kuchus [gay men] Living With HIV/AIDS.
What is life like for HIV-positive gay men in Uganda? It's not easy, because they are living in a kind of double closet.
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In Uganda, gay men living with HIV/AIDS are very closeted. They have a double stigma, due to the fact that they are gay and to the fact that they are HIV positive. The community has discriminated against them, so they want to hide the fact that they are positive. They don't want anybody else to know, so it's kind of a tough life. When they get sick, they don't have anybody to help them. They can't fall on the community for help, and at the same time, when they go back to their family, their families can cast them away because they are gay.
It's a tough life, and they might reveal to their families that they are positive, but they don't reveal that they are gay. Sometimes they might reveal to their community that they are gay, but they don't reveal that they are HIV positive. So they lead a double- or triple-standard life, which has to be balanced somehow all the time. That is their kind of life.
We hope that it can be changed. We are working on changing that. But at the moment, that is what it is.
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U.S. HIV/AIDS Community Reaction to the National HIV/AIDS Strategy
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Julie Davids
Co-Director, Community HIV/AIDS Mobilization Project (CHAMP)
New York City/ Providence, RI
"The vision of HIV as something that is rare in our nation is truly compelling, and we believe it is eminently possible. Many of the specific points on prevention, such as the need to focus efforts in specific groups, conduct research on which combinations of interventions are the most promising, and looking at the impact of income insecurity on the epidemic, are laudable. But is this enough for the power of HIV prevention justice to resonate through the nation? It remains to be seen if the good intentions of the Strategy are achievable without additional resources. With the chronic underfunding of HIV prevention now also compounded by mounting state budget crises as well as the ranks of those unable to access treatment drastically increasing, it's hard to imagine implementation shooting forward without some more funds as part of the equation." |
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Looking Back at 2010 in Terms of HIV/AIDS, What Do You Want to See Change in 2011?
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Angela Green, M.P.H.
Executive Director, IRIS Center
San Francisco, Calif.
I want local health departments to look at PREVENTION epi-data realistically. The risk populations being hardest hit by this pandemic are being completely ignored in prevention efforts. For example: In San Francisco, heterosexual, African-American men and women are not targeted in the city's 2011 HIV prevention plan.
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Is LGBT Pride Still Significant Nowadays?
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Thomas DeLorenzo
Los Angeles, Calif.
In spite of the fact that Will and Grace reruns are in heavy rotation on Lifetime, and the ABC prime-time lineup loves to include gay couples, Pride is relevant now more than ever. We must always take a moment to reflect on the struggles of the past, and thank those that fought them for us. We must also thank our brothers and sisters with HIV that literally fought on the front lines so that we would be able to have our lifesaving drugs. Pride is never over. Pride is never irrelevant. LGBT Pride is our own 4th of July. Like that holiday, we must celebrate it every year and make sure that the future generations of LGBT individuals never forget what life was like before gay made prime time.
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What Are the Greatest Joys and the Greatest Challenges of Being a Mom With HIV?
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Brenda Chambers
Salt Lake City, UT
I would have to say the hardest thing about being a mother is to allow your children to have their own experiences and not try to shield them from naturally occurring consequences. My youngest son is 22 years old and is going back to jail because he failed a urine analysis on probation, and part of me wants to go to the judge and ask for another chance, but the logical part of me says that he has to learn from his mistakes, even if they make my heart sad. It is hard to see him not take responsibility for the actions that placed him in this situation. He is such a loving person, so it is hard to think about him being stuck in a jail cell for 23 hours a day. But I have to let him grow and learn, no matter how much it hurts me or him.
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What Do Advocates, HIVers and Community Members Think About the "Berlin Patient" HIV Cure?
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Keith Green
Project Director for Two HIV Prevention Studies
STOP PLAYING POLITICS WITH MY MOTHER-FUCKIN' LIFE. I'm very excited about what took place with this patient. But, first: We don't know how this will play out in healthy HIV-positive folks, and there's this 5 percent chance that something could go fatally wrong. I assume a greater risk by getting into my car and driving within five miles of my own house.
Don't assume my risks for me. Let me assess my own risks, thank you. Thank you for considering them, but don't base your reasoning for not wanting to move forward with this kind of research or science on that. That's one of the bases, because there are other reasons for not wanting to move forward or pursue the science.
Then there's the cost, right? It would be way too costly. Well, how much is it going to cost to keep me on antiretroviral therapy for the rest of my life, and in care for HIV for the rest of my life? Let's do a cost analysis of that. Just the fact that that is a part of the conversation really is discouraging and breaks my heart, because it makes me feel like a cure really isn't the most desirable option for HIV -- that the most desirable option is antiretrovirals for life, because it's so profitable."
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What Do You Think Generations of LGBT Folks Before and/or After Yours Need to Understand About the Way Your Generation has Responded to HIV/AIDS?
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Brandon Lacy Campos
New York, N.Y.
To those folks after my generation, I would say very simply that we have made progress but we haven't done enough. We haven't let go of our baggage and our pain and our assumptions and our agendas enough to REALLY figure out effective ways to not only teach you about HIV/AIDS but to teach others what it means to live, love, and thrive with this disease. I am sorry that we have played politics with your health, and I apologize that we haven't been brave enought to face our own fears with love and compassion for ourselves. If we had done so, we would, perhaps, have been able to set aside all of that in your interest. Instead, we've continued to look to our own interests first. Have patience and kindness with yourselves, love yourself first, and look past what the preacher might have said or your parents might have said or your elected offical might have said and do what is best, kindest and most loving for you and for others. This, more than anything else, will move us to a place and a day when HIV/AIDS is a closed chapter in our human story.
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Where were you on June 5, 1981, when the world was first introduced to AIDS?
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Tree Alexander
Brooklyn, N.Y.
I first heard about HIV when I found out an uncle of mine was diagnosed in prison. The word spread when he passed away which was about a year after he was released. My mom was the one who really tried her best to explain something that she didn't understand at that time. She explained to me that his immune system wasn't working right and that he couldn't get the medicine that he needed. This was her brother that went to jail when she was pregnant with me, so everyone was so excited when he got out of prison; I was 12 at the time. I didn't know what it truly meant to have "full-blown" AIDS. I just knew that it was something that made you sick and would kill you.
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