Positive Thoughts – Florida Agenda – LGBT News http://floridaagenda.com Thu, 29 Sep 2016 17:11:45 +0000 en-US hourly 1 https://wordpress.org/?v=4.5.4 http://floridaagenda.com/wp-content/uploads/2015/10/cropped-favicon2-50x50.jpg Positive Thoughts – Florida Agenda – LGBT News http://floridaagenda.com 32 32 The HIV Vaccine Search: 20 Years and Counting http://floridaagenda.com/opinion-2/positive-thoughts-opinion-2/hiv-vaccine-search-20-years-counting Mon, 08 Aug 2016 15:29:28 +0000 http://floridaagenda.com/?p=44048

By Oriol R. Gutierrez Jr.   Mark Feinberg, MD, PhD, is the new president and CEO of the International AIDS Vaccine Initiative (IAVI). He took over as head of the organization in September 2015. He leads a global team of scientists, clinicians and advocates in the search for preventive HIV vaccines that are safe, effective […]

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By Oriol R. Gutierrez Jr.

 

Mark Feinberg, MD, PhD, is the new president and CEO of the International AIDS Vaccine Initiative (IAVI). He took over as head of the organization in September 2015. He leads a global team of scientists, clinicians and advocates in the search for preventive HIV vaccines that are safe, effective and accessible.

Prior to joining IAVI, Feinberg was the chief public health and science officer for Merck Vaccines. He served 11 years in total at Merck & Co. in various leadership roles, working on the pharmaceutical company’s vaccine and infectious disease efforts, which included rotavirus, human papillomavirus, shingles and HIV. Most recently, he led the company’s efforts on a promising Ebola vaccine.

 

Feinberg has more than 30 years of experience in HIV care and research. He was on the faculty at the University of California, San Francisco and the Emory University School of Medicine in Atlanta. He was on the medical staff at San Francisco General Hospital and Grady Memorial Hospital in Atlanta, and he was a medical officer in the Office of AIDS Research at the National Institutes of Health.

 

What are your thoughts on IAVI marking its 20th anniversary this year?

 

It’s both a chance to reflect on what the organization has accomplished, as well as to think about its future. This year also marks 20 years since the advent of effective antiretroviral therapy. Before IAVI, that was a time when the most effective approaches to treating HIV had not yet been codified. However, the discussions to create an entity like IAVI predated the biomedical success of effective therapy.

 

IAVI is committed to the overall goal of ending AIDS. We recognize that AIDS will only come to an end if an effective vaccine is developed, but while that work goes on, every aspect of the response to HIV needs to be maximized. That includes getting as many people as possible who have HIV to know they have the virus and getting as many people with HIV on therapy as soon as they are able. Pre-exposure prophylaxis (PrEP) should also be widely available.

When an HIV vaccine is developed, it will coexist with other treatment and prevention modalities. That creates complexity, but it also creates opportunity and is a testament to how much progress has been made in 20 years. That said, the needs remain enormous. Most people living with HIV don’t know their status, most with the virus are not on treatment around the world, and most who could benefit from PrEP have no way of getting access to it.

A vaccine would be the best possible solution to address a lot of the barriers that currently limit the impact of available interventions in protecting at-risk populations. A characteristic that distinguishes a vaccine from therapy or PrEP is that you can have a defined regimen of administration that would take place over a short period of time and would offer long-term protection.

 

What is IAVIs mission?

 

IAVI is focused on the goal of developing an HIV vaccine. That includes work that we do in our own research labs and programs. But I think even more important than that is our commitment to maximizing the success of the overall HIV vaccine field. That means that we want to put in place resources that can support the work of investigators outside of IAVI, whether they’re from academic labs or government labs.

One example of that is a service that we provide to investigators who don’t have experience taking promising ideas from the laboratory into the clinic. That involves all kinds of complicated issues, like properly manufacturing the vaccine candidate, assuring its quality, dealing with regulatory issues and designing appropriate clinical trials. Many of the most brilliant scientists don’t have that expertise and it wouldn’t be the best use of their time to try to acquire it.

We provide that as a function to investigators. In many ways, what IAVI has designed itself to be in 2016 is an organization that seeks to identify opportunities for greater collaboration in the field. And it seeks to both identify and solve barriers that exist. We are advancing candidate vaccines that have demonstrated promise.

 

What are some of IAVIs successes?

 

IAVI, our scientists and our collaborators have made major contributions to understanding the immune response in people with HIV and to using that information to guide vaccine development. In the course of that work, we have a much more detailed understanding of the structure of the key components of HIV that will likely be the target of protective immune responses, and we have a much better idea about how to design vaccines.

 

Part of that work has led to the isolation of a series of monoclonal antibodies, both by IAVI and other investigators, that are now being explored for passive administration to prevent HIV infection. The goal would be to serve the same purpose as oral PrEP, but you might administer it once every three or six months via an injection rather than having to take a pill every day. There are lots of other, even more promising, antibodies including a number that IAVI and partners helped discover, isolate and characterize, that are also being explored as therapeutic or curative agents.

Are there other interventions, including immunologic ones like broadly neutralizing monoclonal antibodies, that could help promote clearance of infected cells that are not somehow reached by drugs themselves? Are there ways of activating the expression of HIV proteins that could then be targeted by immunologic intervention, such as antibodies, to work in concert with the antiretroviral drugs to cure people of HIV? And if it’s not a definitive cure, can you achieve a so-called functional cure? That exploratory research is going on.

 

Why is this process so difficult?

 

Developing an HIV vaccine or some modality to cure people of HIV is dependent upon solving many complicated – and currently incompletely understood – aspects of the biology of HIV infection. They’re much more complicated than anything the scientific community has ever been asked to solve for before.

HIV causes an infection that the immune systems of people with the virus aren’t able to get rid of and persists in them throughout their lives. We don’t yet have vaccines that protect against infections the immune system itself is not naturally able to clear.

Making an HIV vaccine means that we’ll have to do better than the immune system normally does itself. There are a number of exciting ideas about how to do that. Will they work? I don’t know. Is it important to find ways of testing them as quickly as possible? Definitely.

The main barrier is the science, but other barriers relate to how effectively people work together to address complicated challenges like this one, which involves a long-term effort. It involves stakeholders from the public sector, the private sector, academia, government and nonprofit organizations. We’re gratified to see increased collaboration in the field. We want to do everything we can to foster that.

 

What can individuals do to help?

 

I started working in HIV in 1984. I had no idea at the time that I would be spending my entire career on it. This will outlast me for sure. One of the real challenges is the level of public attention to HIV has waned. Maintaining a durable commitment for as long as it’s going to take to get rid of AIDS is something that I think is an important area for advocacy, not only for IAVI.

Individuals can make sure that the world doesn’t forget about the importance of continuing to pay attention to this issue. Continue to advocate for the development of new innovations. In addition, there is always the opportunity for participation in research studies. There’s a lot of work that will need to be done that will require clinical trials involving both people with the virus and HIV-negative people. Without the commitment of people who have been in clinical trials to date, we wouldn’t have the modalities that we have today.

Oriol R. Gutierrez Jr. is the editor-in-chief of POZ magazine. Find him on Twitter @oriolgutierrez.

 

Photo: Harvardmagazine.com

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Changes http://floridaagenda.com/opinion-2/positive-thoughts-opinion-2/changes Tue, 12 Jul 2016 18:52:32 +0000 http://floridaagenda.com/?p=43506

By Jeff Barry This past January I awoke to the news that David Bowie had just died. My partner Stephen told me as I walked into the kitchen. I thought it had to be a mistake, some kind of horrible, twisted hoax. When you are 57 years old, as I am, 69 seems way too […]

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By Jeff Barry

This past January I awoke to the news that David Bowie had just died. My partner Stephen told me as I walked into the kitchen. I thought it had to be a mistake, some kind of horrible, twisted hoax. When you are 57 years old, as I am, 69 seems way too young to die.

When I graduated from high school in 1976, my parents gave me an all-in-one stereo system that I would play my vinyl records on (it even had a built in 8-track player!). I would listen to Bowie’s album “Young Americans” over and over on the turntable, and was spellbound by Bowie – his music, lyrics, the androgynous look. Everything about him spoke to me, and as a slightly effeminate, young, gay man who was still in the process of coming out, he gave me confidence that everything was going to work out, and that I would eventually come into my own someday. He gave me, and others like me, hope, and made it cool to be different.

After testing positive for HIV in 1989 at the age of 30, I wasn’t sure I would live to see 35, as there were still no effective treatments for HIV. When those treatments did finally arrive they were often difficult to take, and some had debilitating side effects. While recent treatment advances have made HIV therapy much simpler and safer, there can often be underlying issues such as mental health, substance abuse and financial instability that need to be addressed in order to be successful in treating HIV.

Take it upon yourself to create your own plan and path to wellness. If you’re depressed or feel isolated, talk to someone at a support group or even an online community (there are many on Facebook such as the “International place for people with HIV/AIDS, and the people who love us” or “HIV Long Term Survivors”). If you are using, there are resources to help you get and stay sober (AA, NA or CMA) or at the very least play safely and sanely (such as tweaker.org). If you’re HIV-positive, seek out an HIV case manager at the nearest AIDS service organization in your area who can help you see if there are financial resources available to you to help ease some of the stresses of day-to-day living. Consult with a provider who is knowledgeable about HIV/AIDS, and come prepared with a list of questions about potential side effects and drug interactions that you might be concerned about. If you want to simplify your treatment or help make it easier for you to take it every day as prescribed, see if there is something available that will work for you.

If you are HIV-negative, PrEP, or pre-exposure prophylaxis, is a daily pill you can take to prevent HIV. Truvada is currently the only approved medication for PrEP. While any doctor can prescribe PrEP, you can find a list of providers who are knowledgeable and familiar with PrEP at http://www.greaterthan.org/get-prep. If you are HIV-positive, and are on effective HIV treatment, your virus will be suppressed to a level so low (undetectable) that it is virtually impossible for you to transmit the virus to others.

Much has changed in 20 years: the dawn of the internet, smart phones, social media, even treatment and prevention for HIV. But one constant remains. Treating and preventing HIV is as much an art as it is a science. Change is inevitable, but by embracing it we “turn and face the strange,” as Bowie said, and become the architect of our own future, and master of our destiny.

Jeff Berry is the editor of Positively Aware magazine. This column is a project of Plus, Positively Aware, POZ, TheBody.com and Q Syndicate, the LGBT wire service. Visit their websites — http://hivplusmag.com, http://positivelyaware.com, http://poz.com and http://thebody.com — for the latest updates on HIV/AIDS.

 

 

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Good Morning Vietnam http://floridaagenda.com/opinion-2/good-morning-vietnam Mon, 13 Jun 2016 17:27:01 +0000 http://floridaagenda.com/?p=42518

By Diane Anderson-Minshall My stepfather came back from Vietnam in the mid-’70s, a broken man with post-traumatic stress disorder and health complications that grow more dire the older he gets. His PTSD has lasted 40 years; he couldn’t “just let it go” as some people have admonished. I was talking with my friend Scott* recently […]

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By Diane Anderson-Minshall

My stepfather came back from Vietnam in the mid-’70s, a broken man with post-traumatic stress disorder and health complications that grow more dire the older he gets. His PTSD has lasted 40 years; he couldn’t “just let it go” as some people have admonished. I was talking with my friend Scott* recently and couldn’t help but notice the similarities between the two men, veterans of wars they didn’t want to participate in, both still suffering from PTSD. Scott, however, never served in the military. He is a veteran of the AIDS epidemic of the 1980s and ’90s, that first wave of battle before the enemy was known but not before his comrades were all killed.

Scott has AIDS. He’s OK when I call it stage three HIV, as many activists and scientists now do to remove the stigma – after all, AIDS is simply the last stage of HIV disease – but he doesn’t want the world, and the LGBT community especially, to know he’s living with AIDS, and has been for 30 years or so.

Nobody listens to old gay guys living with HIV. Our world, from the prevention workers to the gay clubs to LGBT media, has focused on the fastest growing group getting HIV: young gay and bi men under 30. There’s good reason for that both from a prevention standpoint and a sense of racial justice. Young gay and bi men, especially those of color, have the highest risk of HIV among all young people, and while African-Americans only represent 33 percent of people under 24 in the national population, they account for 57 percent of new HIV infections among those aged 1324. For young black trans women the stats are even worse; 56 percent of all black transgender women already have HIV.

Yes, it’s critical we reach these young men and women, because without intervention the Centers for Disease Control and Prevention has predicted that half of all black gay and bi men will have HIV in their lifetimes. Nobody is modeling numbers for trans women, but I’d venture to say it’s even worse.

The number of people living with HIV over 50 is growing as well, both because antiretrovirals are keeping long-term survivors alive now and because new infections are growing for a variety of reasons. And in an ageist world and a youth-centric culture, this group has been largely left to fend for themselves, which is perhaps why it seems, anecdotally, the suicide rate is higher.

Take my friend Scott. He’s saying what a lot of these people over 50 have been saying: that they aren’t being listened to, seen, or addressed. They are living long lives, but they are experiencing early aging (researchers say people with HIV age 14 years faster, despite living as long as non-poz peers).

Scott’s had Sculptra in his face to remove signs of wasting (a 10 percent loss of body weight) and he’s had surgery to remove fat from his back (the dreaded buffalo hump some anti-HIV medications cause). He has a catheter that sometimes leaks (another drug side effect) thanks to bouts of Kaposi’s sarcoma and anal cancer; fighting the latter with radiation and chemo took a toll on his immune system. Today he wears adult diapers, something that stops him from dating. His ego can’t take it. His longtime partner died of AIDS complications years ago. He’s lonely and isolated and sometimes battles depression.

But equally often he’s mad as hell. In large part, because like my stepfather, he’s been forgotten, as are the others who survived the first wave of the AIDS epidemic. He’s never really grieved (there’s no time) even though he lost dozens of friends, faced elected officials who suggested a vast quarantine system for people like him and realized how uncaring the world could be.

He’s also misunderstood, he says.

While the younger gay and bi men he meets treat HIV as a chronic manageable condition like diabetes, he’s had a different experience beginning with a constant fear of death in the early days. Young gay poz activists are sexy and healthy looking; Scott is not. He was the guinea pig, one of many who took the first HIV drug: AZT (azidothymidine), which was fast-tracked by the FDA in 1987 and thousands were dying.

People with HIV were thrilled to have something, even if that something was as flawed as AZT was back in the day. The early dosing was too high (1,500 mg vs. around 300 mg later) and quite toxic. Many (perhaps most) who took it still died. But people often halved their doses and shared it with friends who didn’t have access, which is what Scott did. Taking 750 mg may have saved his life. But it didn’t save him from AIDS.

He was diagnosed with AIDS as soon as the term changed from Gay-related immune deficiency (GRID) to acquired immunodeficiency syndrome (AIDS). HIV stage 3 or AIDS happens when a person’s CD4 cells falls below 200 cells per cubic millimeter of blood. If you don’t get treatment, people with AIDS generally only live one to three years. But, with treatment, you can live many years, sometimes going in and out of the clinical diagnosis of AIDS, but often never getting your CD4 count up high enough because of previous damage from opportunistic infections.

Nowadays, we – the HIV and LGBT media, health advocates, and more – push for medication adherence, treatment as prevention and undetectable viral loads. (Your viral load is how much HIV is in your blood; when it’s below 50, it is undetectable and you have less than a 1 percent chance of passing HIV to others). And when we report on gay men living with AIDS for years, commenters on social media often write scathing comments about these poz folks blaming them for not being adherent, not caring, “spreading AIDS,” and so on. What these ill-informed critics don’t get, what we don’t report often enough, is that many of these GBT folks with HIV take their medication religiously; perhaps they always have. They may have never left the AIDS stage of HIV infection. In 2013, 27 percent of the 26,688 AIDS diagnoses in the United States were people 50 or older; of the deaths related to AIDS complications that year, 37 percent were people over 55.

Older people who get diagnosed today with HIV are more likely to actually be at stage 3 when they find out. Gay men like Scott who have lived with it since the earliest days of the disease didn’t ask for AIDS, either. They were the guinea pigs who took the earliest of the drugs – it wasn’t until the mid-’90s that we had decent drugs, wasn’t until the last decade we had the best combination antiretrovirals. What that means is that much like those Vietnam vets (who also were subjected to untested chemicals), Scott and his fellow long-term survivors went through hell with their bodies so that young people today have the option to take a single pill a day and stay healthy and happy and undetectable. It’s an option that’s not available to Scott, but it’s one he helped create for all of you.

It took decades before Vietnam veterans got their own much-deserved memorial. So much loss and anguish surround the survivors of those who perished or are still MIA but presumed dead from that war. The same is the case with the war on AIDS. We have quilts and memorials in the works, things that’ll let us honor the thousands of our friends and fellow queers who died. But for Vietnam vets and long-term HIV survivors alike, there’s never been an emphasis on those who made it home, those who survived. No right to grieve, no time to wallow. They’re just supposed to count themselves lucky and shut the hell up.

But maybe they’ve been talking all along and it’s us who hasn’t been listening.

Diane Anderson-Minshall is the editor in chief of Plus magazine, editor at large for The Advocate, and founder and chief storyteller at Retrograde Communications, an editorial services and content curation firm.

 

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Brainy Quotes on the Puzzle of Life http://floridaagenda.com/news/brainy-quotes-on-the-puzzle-of-life Fri, 20 May 2016 19:16:32 +0000 http://floridaagenda.com/?p=42056

I’ve heard from quite a few people lately who are currently going through difficult times. I know that there are many others out there who are just trying to find ways to make the pieces fit. I always say, “Stay Strong…” It may seem like simple little words, but if you keep them as your […]

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I’ve heard from quite a few people lately who are currently going through difficult times. I know that there are many others out there who are just trying to find ways to make the pieces fit. I always say, “Stay Strong…” It may seem like simple little words, but if you keep them as your mindset, they can help see you through anything. Here are five other brainy quotes, that just might make your day better.

Adam Baldwin: I just consider myself a piece of the puzzle and I’m lucky enough to be asked or invited to the party, if you will. I hope I can bring some laughs and grimaces to the fans.

Kurt Vonnegut: Everyone now knows how to find the meaning of life within himself. But mankind wasn’t always so lucky. Less than a century ago, men and women did not have easy access to the puzzle boxes within them.

Robert Adams: The experience of life that you and I have is pretty much a jigsaw puzzle in the box: Day-to-day experiences of disconnected pieces that don’t seem to justify the efforts we make each day.

Adrian Belew: My favorite puzzle is trying to work out the parts myself, after all it is a solo effort.

Joko Beck: We are caught in the contradiction of finding life a rather perplexing puzzle which causes us a lot of misery, and at the same time being dimly aware of the boundless, limitless nature of life. So we begin looking for an answer to the puzzle.

Staying strong is the key to making it through to the other side a stronger, better person. It’s the key to hanging in there long enough to make the pieces of the puzzle fit. Whatever puzzle lies before you, know that you hold all of the pieces. Keep the big picture in front of you and… yes… stay strong.  —Kevin Broady

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Kate Burton Builds On The AIDS Legacy Of Stepmother Elizabeth Taylor http://floridaagenda.com/opinion-2/positive-thoughts-opinion-2/kate-burton-builds-on-the-aids-legacy-of-stepmother-elizabeth-taylor Mon, 25 Jan 2016 21:23:38 +0000 http://floridaagenda.com/?p=38452

By Jeff Berry Many know Kate Burton as an actress, most recently portraying the right-wing Vice President Sally Langston in the hit TV show Scandal, and in Grey’s Anatomy as Dr. Ellis Grey, the former surgeon and mother of lead character Dr. Meredith Grey, who dies of Alzheimer’s. But what some people may not realize […]

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By Jeff Berry

Many know Kate Burton as an actress, most recently portraying the right-wing Vice President Sally Langston in the hit TV show Scandal, and in Grey’s Anatomy as Dr. Ellis Grey, the former surgeon and mother of lead character Dr. Meredith Grey, who dies of Alzheimer’s.

But what some people may not realize is that Burton, daughter of actor Richard Burton, also serves as an ambassador for the Elizabeth Taylor AIDS Foundation (ETAF), which her stepmother founded. “People know, and people knew, my stepmom as a famous movie actress,” said Burton in a 2014 interview, “but at her fundamental core, she was a caring, compassionate person who advocated for the neediest of the needy.”

Burton, in an email to Positively Aware magazine, says she’s been involved in raising awareness about HIV since her dear friends Meghan Robinson and Michael O’Gorman died from AIDS. “From that time on, I knew that it would be a fight I would devote myself to. It was thrilling to me that Elizabeth became such a passionate advocate for AIDS awareness. As we all know, she and Dr. (Mathilde) Krim put this fight on the map.”

Elizabeth Taylor founded ETAF in 1991 to support organizations delivering direct care and services to people living with HIV and AIDS, often to the most marginalized populations, according to their website. Today, Taylor’s friends and family work together as ETAF ambassadors to help keep the issue of HIV/AIDS “top-of-mind” for the public. Taylor’s trust covers the operating costs of ETAF, ensuring that 100 percent of donations go directly to people affected by HIV/AIDS.

“My work as an ETAF ambassador entails many things,” says Burton, “but primarily I serve as a spokesperson or a message deliverer when called upon, although the hard ‘on-the-ground’ work is delivered by (ETAF Managing Director) Joel Goldman and his wonderful staff.”

Following the devastation of Hurricane Katrina, NO/AIDS Task Force, the largest HIV provider in New Orleans, had no offices and its patients nowhere to turn. Taylor wanted to help, and through her foundation was able to provide a mobile treatment unit so that clients were able to continue to access their medications and other lifesaving services, uninterrupted.

Taylor, understanding how successful the model was and that it didn’t need to be limited to a natural disaster, began to replicate it in other locales. She knew that chronic lack of access to healthcare was the biggest barrier in the battle against HIV and AIDS, according to a recent ETAF statement, and said, “If people cannot get to healthcare, why can’t we bring healthcare to people?” Since 2008, seven Global AIDS Interfaith Alliance/Elizabeth Taylor Mobile Health Clinics have been delivering care to the people of Mulanje and Phalombe districts in Malawi.

Recently, in collaboration with the Elizabeth Taylor Trust and The Elizabeth Taylor AIDS Foundation, Getty Images Gallery in London produced “Grit and Glamour” to mark 30 years since Taylor first began her leadership in the fight against HIV/AIDS. Taylor’s son Christopher Wilding’s “major new photographic exhibition offered Elizabeth Taylor fans the chance to view previously unseen images of the Hollywood icon in a celebration of the British actress’ 30-year campaign to raise awareness on HIV and AIDS,” according to the Daily Mail.

In her day job, Burton has garnered two Emmy nominations for her portrayals of strong characters developed by Shonda Rhimes, the creator of Grey’s Anatomy and Scandal. “Shonda Rhimes has been incredibly important to me in my life as an actress,” says Burton. “She chose me to play Ellis Grey in Grey’s Anatomy 12 years ago, which changed my professional life but more importantly, put advocacy for Alzheimer’s research front and center on network television and in the national conversation. Seven years later she chose me to play the larger-than-life, devout and conservative Vice President Sally Langston in Scandal. I initially thought that this character was not based on reality…until I saw the current crop of Republican candidates! Sally would fit right in amongst them, alas!”

In February hundreds of HIV advocates from across the country will descend upon Washington D.C. for AIDSWatch 2016, the largest constituent-based HIV advocacy event in the U.S., to educate Congress about the policies and resources needed to end the HIV epidemic. ETAF is the lead sponsor.

“The work that AIDSWatch does to elevate the voices of people living with and affected by HIV is crucial, and very much aligned with Elizabeth Taylor’s passionate approach,” says Joel Goldman of ETAF. “She used her enormous platform to advocate for those whose voices were being ignored, just as AIDSWatch is doing today. ETAF is thrilled to be the presenting sponsor for the second time and to see the impact of this exciting event continue to grow.”

As for Burton, she says her advocacy for AIDS research and the search for a cure will continue throughout her life. Along with her work at ETAF she also serves on the board of Broadway Cares/Equity Fights AIDS.

In September of last year at the 2015 United States Conference on AIDS (USCA), Burton presented the Elizabeth Taylor Legacy Award to House Leader Nancy Pelosi for her tireless work in the fight against HIV. “Presenting the ETAF award to Leader Pelosi on behalf of my stepmother was one of the greatest honors I have ever had,” says Burton. “I will always cherish the memory.”

Photo Credit: imgkid.com

Jeff Berry is the editor of Positively Aware magazine. A version of this article appeared in the January/February issue of Positively Aware (positivelyaware.com). For more information on the Elizabeth Taylor AIDS Foundation and AIDSWatch 2016, go to etaf.org and aidsunited.org.

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HIV Is Not Your Enemy http://floridaagenda.com/opinion-2/positive-thoughts-opinion-2/hiv-is-not-your-enemy Thu, 27 Aug 2015 16:14:49 +0000 http://floridaagenda.com/?p=33752

By Myles Helfand Please don’t be afraid of HIV. It doesn’t deserve it, and you deserve better. Don’t get me wrong: I’m not anti-fear. I’ve got a whole mess of fears myself – of failure, of illness, of crossing the hectic street outside my office in Manhattan. I’ve got fear pretty down pat. Heck, it’s […]

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By Myles Helfand

Please don’t be afraid of HIV. It doesn’t deserve it, and you deserve better.

Don’t get me wrong: I’m not anti-fear. I’ve got a whole mess of fears myself – of failure, of illness, of crossing the hectic street outside my office in Manhattan. I’ve got fear pretty down pat.

Heck, it’s even healthy. Fear is one of our most fundamental human instincts. It helps keep us safe.

I even think it’s healthy to have some fear when it comes to HIV. It’s OK to fear becoming infected with HIV, and it’s OK to be scared of what HIV might do to your body if you’re positive, or to be concerned about the potential side effects of treatment.

Those fears can be good if they result in action that makes us better. If we’re appropriately afraid of becoming infected with HIV, we’ll (hopefully) learn more about how the virus is transmitted and the right ways to protect ourselves, and we’ll seek to make changes in our lives that reduce our risk.

For some of us, that’ll mean using condoms or starting pre-exposure prophylaxis (PrEP). For others, it may mean leaving an abusive relationship, or challenging conditions such as poverty and lack of safe housing that put many at greater risk.

If we’re living with HIV and afraid of what comes next, we’ll (hopefully) talk to our doctors and read information on reputable websites, like the four sites who have teamed up to write this monthly column, so that we can ease that fear with information and a plan forward.

But to fear HIV itself? That’s where I think we run into problems. Fearing HIV because it exists isn’t logical: HIV itself is not some kind of cold, calculating, devious enemy that seeks to destroy us. It doesn’t care about us at all. It just wants a place to live, and we happen to be a pretty hospitable environment.

Nonetheless, a whole lot of us fear HIV itself. Maybe part of that is sheer, animal instinct, but I think much of it is learned. Over the years, an endless array of awareness campaigns has cast HIV as a villain to be conquered, as though it were some kind of inherently evil creature. We’re at war with HIV, the common refrain goes (I’m as guilty as anyone of using it), and in that life-or-death fight, the virus is the big bad.

But here’s the thing: When we see HIV as a vicious enemy, many of us – far too many –tend to start seeing HIV-positive people as enemies by extension.

“Those people!” we think. “They allowed this thing to get inside them. They’ve put others at risk. They bear as much blame as the virus itself.”

When HIV-negative people become HIV positive, that fear – that judgment, that blame – needs somewhere to go. A lot of the time, it lashes out in two directions: inside, toward themselves; and outside, toward the person they think they got HIV from.

This can also be the reaction when HIV-negative people find out that a person they’ve been intimate with has HIV, even when there’s little or no risk of transmission and they remain negative.

This is how stigma happens, and when it happens, discrimination follows. It’s how people – Americans, in 2015 – get sent to prison for HIV exposure, some serving terms that are longer than sentences for voluntary manslaughter. These people didn’t share their status because they were afraid. Afraid to be judged. Afraid of the stigma. Afraid to be alone. And, in some cases, maybe at least a little afraid of themselves.

It’s a cycle that feeds on itself. We see it in too many HIV education advertisements; one recent campaign features a couple in bed, one partner facing toward us, the other sitting behind them and looking down at them, wondering, “Do I trust him (or her)?”

Screw that. Preventing HIV isn’t about whether we trust our partner. It isn’t about fearing the virus or people who live with it. Those instincts are the reason HIV continues to thrive in so much of the world, the U.S. included. Fear breeds stigma, and stigma breeds silence.

No, preventing HIV means caring about ourselves enough to understand what HIV is, how it works and what the risks are. And it’s about respecting ourselves enough to know that we’re worth the steps we can take to keep ourselves, and others, as healthy as we deserve to be.

I’m not saying it’s easy to do this, neither for us as a society nor for you and me as individuals. But we need to, or HIV will continue to hurt us in ways that go far beyond the damage it does to our bodies. Maybe it can start with HIV education efforts that focus less on fear, and more on self-respect.

In mid-July, humanity lost a man named Bob Munk. He was diagnosed with HIV in 1987, and immediately dove into AIDS activism, which became his passion. He was a brilliant, kind, deeply caring man. One of his most enduring legacies is AIDS InfoNet, a Web-based effort he started in the early years of the Internet to create and distribute a huge array of fact sheets on HIV-related topics to as many people, in as many languages, as he could possibly manage.

These fact sheets are short, to the point, easy to understand and deeply rooted in reliable research. They say to people: “Here’s what we know. We trust you with this information. Read it, learn it, and use it to make life better.”

In a world so often gripped by an obsession with using fear as an HIV prevention tool, Bob Munk opted to take the high road: education, empowerment, self-care. His fact sheets have helped countless thousands, and they push back against what sometimes feels like a relentless tide of fear, stigma and ignorance.

I think he had it right. Fear of HIV isn’t the answer, and doesn’t help anyone. We need to respect ourselves, and each other, enough to ensure that we each understand HIV so that we can help one another get past it. We deserve that.

Myles Helfand is the editorial director of TheBody.com and TheBodyPRO.com. Find him on Twitter @MylesatTheBody. This column is a project of Plus, Positively Aware, POZ, TheBody.com and Q Syndicate, the LGBT wire service. Visit their websites — http://hivplusmag.com, http://positivelyaware.com, http://poz.com and http://thebody.com — for the latest updates on HIV/AIDS.

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