Health/Fitness » HIV/AIDS

Working Together To End the Stigma of HIV

by Shaun Knittel
EDGE Media Network Contributor
Saturday Dec 1, 2012

A lot has changed since the world was first introduced to the thing that we then called "gay cancer." Once considered certain death, HIV/AIDS is now largely seen as a manageable disease. Thirty years is a long time to be at war and although many battles have been won along the way, we continue to fight for a cure. But there is one aspect of the epidemic that continues to plague not only the people afflicted by the disease, but also the family, friends and lovers of people living with HIV/AIDS: stigma.

"People living with HIV are our community members, and all these negative stereotypes are being perpetuated by brothers, sisters, aunts and uncles," said Tony Radovich, a Seattle-based HIV/AIDS activist. "Stigma is propagated by people all over."

Stigma is perceived as a major limiting factor in primary and secondary HIV/AIDS prevention and care, and has interfered with voluntary testing and counseling, and access to care and treatments.

"Look at Grindr or other sites lately," Radovich said, talking about how even on social dating sites there exists a stigma towards men who have tested positive. "They type demands like, 'Be Clean.' Well fuck you. That's all I have to say about that."

About 34 million people are infected with HIV globally; 25 million have died from it. While there's no vaccine, cocktails of powerful antiviral drugs called antiretroviral therapy (ART) can keep the virus suppressed and keep people healthy. But no matter how long they take ART, they are never cured. That is where stigma enters the picture.

Stigma and discrimination are universally experienced by persons living with and affected by HIV/AIDS. The virus lurks in the body and comes back if the drugs are stopped. Scientists want to flush out these so-called reservoirs and find a way to kill the virus for good.

"Remember," Radovich told EDGE, "don't use someone's HIV status as a reason to treat them any differently, show them any less respect, or love them any less. Instead, encourage conversation and educate each another. One by one we end the stigma."

Stigma And Sex

"HIV is just a small part of who I am as a person," said Radovich. "It doesn’t define me. My actions define me."

Radovich is a living success story. He’s lived with HIV for more than a decade and battled substance abuse to come out the other side, perhaps a little bruised, but undefeated.

"I would tell newly-diagnosed folks to start accepting the fact that you will live a long and fruitful life," he said. "Keep doing what you’re doing, have goals and surround yourself with people who love you unconditionally."

Approximately one in five (19 percent) men who have sex with men (MSM) in a study of 21 major U.S. cities is infected with HIV, and nearly half (44 percent) of those men are unaware of their infection, according to a new analysis from the Centers for Disease Control and Prevention. In the study, young MSM and MSM of color were least likely to know their HIV status.

"This study’s message is clear: HIV exacts a devastating toll on men who have sex with men in America’s major cities, and yet far too many of those who are infected don’t know it," said Kevin Fenton, M.D., director of CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention. "We need to increase access to HIV testing so that more MSM know their status, and we all must bring new energy, new approaches and new champions to the fight against HIV among men who have sex with men."

Radovich works with the group, a grassroots, all-volunteer community based prevention program developed by men who have sex with men specifically for our community.

"Our mission is to stop the spread of HIV and other sexually transmitted infections in our community by teaching the facts about sexually transmitted infections and by providing free condom/lube kits to the community as tools to help reduce the spread of these infections," he said.

Because of stigma, Radovich said it is important to remind youth that without proper medication, HIV will kill you.

"I accept the thought that we can have an AIDS-free generation," he told EDGE. "It’s going to be tough but I’m willing to continue the fight."

Stigma Around The World

Public attitudes about HIV/AIDS have changed dramatically since the first AIDS cases were reported 30 years ago. But in many parts of the world, the stigma is still powerful. But AIDS-related stigma is not static. It changes over time as infection levels, knowledge of the disease and treatment availability vary.

The UN Joint Programme on HIV and AIDS recently launched the 2012 Global Epidemic Report and reported significant declines in new infections among adults and children, with high numbers of people placed on antiretrovirals.

Sub-Saharan Africa, the region most severely affected, has shown progress with about 1.8 million new HIV infections in 2011 compared with 2.4 million in 2001. Between 2005 and 2011, the number of people dying from AIDS-related causes in sub-Saharan Africa declined by a third from 1.8 million to 1.2 million.

But while there have been victories in the treatment and prevention arena, fear, ignorance and discrimination, including abusive treatment and violence, remain a big problem in a number of countries. According to data collected, more than half of the people living with HIV in Zambia reported having been verbally abused as a result of their HIV status. One in five people living with HIV in Nigeria and Ethiopia reported feeling suicidal.

According to a nine-country study by the International Labor Organization and the Global Network of People Living with HIV, the percentage of people living with HIV who reported discriminatory attitudes among employers ranged from 8 percent in Estonia to 54 percent in Malaysia. As of this year, 60 countries have adopted laws that specifically criminalize HIV transmission, with about 600 convictions reported.

According to a global review this year, more than 40 percent of UN member states (78 of 193 countries) criminalize same-sex relations, with some permitting imposition of the death penalty for convictions under such laws.

Most countries have laws deeming some aspect of sex work to be illegal, and these are often used to justify harassment, extortion and violence against sex workers, placing them at increased risk of HIV. To counter this, some countries have reformed laws to decriminalize populations at higher risk: Portugal decriminalized drug possession and use in 2000, and in 2003 New Zealand adopted a law that decriminalized sex work.

The Stigma Project

Organizations like the newly founded group The Stigma Project work to lower the HIV infection rate and neutralize the stigma associated with HIV/AIDS through education and awareness via social media and advertising. This grassroots organization seeks to create an HIV neutral world, free of judgment and fear by working with both positive and negative individuals from all walks of life, regardless of their gender, sexual orientation, race or background.

Social media is one of today’s largest mediums of news, culture and education, and The Stigma Project uses it to educate people on everyday examples of stigma, some of which are listed below. It is their wish that through removing the stigma of having HIV, they can help people live fuller, healthier lives.

"Whether you’re HIV-positive, negative, or you don’t know (and should), we need your help," they write on their website. "Ask your friends to join us in starting a revolution: an ’HIV Neutral’ revolution."

Everyday Examples of Stigma

Referring to HIV as "AIDS."

Presuming because someone is HIV-positive, they’re sick, contagious, or dying.

Believing HIV can be contracted by casual contact or kissing.

Using the word "clean" when referring to a negative HIV status, or combining drug use with HIV status, often referred to in online personal ads as the acronym, "DDF."

Dismissing, judging, or rejecting someone who is HIV-positive when they disclose their status.

Trusting that every sexual partner will be honest in disclosing his or her status.

Perceiving HIV-positive people to be failures, promiscuous, or that they "deserved" to become infected with HIV.

Discussing someone’s HIV status, whether it is rumor or factual, without their consent or knowledge.

Refusing or withholding from getting tested for HIV for fear of a positive result.

Shaun Knittel is an openly gay journalist and public affairs specialist living in Seattle. His work as a photographer, columnist, and reporter has appeared in newspapers and magazines throughout the Pacific Northwest. In addition to writing for EDGE, Knittel is the current Associate Editor for Seattle Gay News.


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