Category Archives: Stigma

How AIDS remained an unspoken – but deadly – epidemic for years

By the end of 1984, AIDS had already ravaged the United States for a few years, affecting at least 7,700 people and killing more than 3,500. Scientists had identified the cause of AIDS—HIV—and the U.S. Centers for Disease Control and Prevention (CDC) identified all of its major transmission routes.

Marchers on a Gay Pride parade through New York City
Marchers on a Gay Pride parade through New York City

Yet, U.S. leaders had remained largely silent and unresponsive to the health emergency. And it wasn’t until September 1985, four years after the crisis began, that President Ronald Reagan first publicly mentioned AIDS.

But by then, AIDS was already a full-blown epidemic.

HIV originated in 1920 in Kinshasa, Democratic Republic of Congo. It spread to Haiti and the Caribbean before jumping to New York City around 1970 and California within the decade.

Health officials first became aware of AIDS in the summer of 1981. Young and otherwise healthy gay men in Los Angeles and New York began getting sick and dying of unusual illnesses normally associated with people with weakened immune systems.

It didn’t take long for fear of the “gay plague” to spread quickly among the gay community. Beyond the mortal danger from the disease, they also dealt with potentially being “outed” as homosexual if they had AIDS or an illness resembling it.

In fall 1982, the CDC described the disease as AIDS for the first time. Despite the growing cases and a new name, news outlets struggled with the disease, or at least how to cover it—some even shied away from giving it too much attention. Though the New York Times initially reported on the mysterious illnesses in July 1981, it would take almost two years before the prestigious paper gave AIDS front-page space on May 25, 1983. By that time, almost 600 people had died from it.

David W. Dunlap, a reporter in the Metro section at the time, told the New York Times Style Magazine: “There were strong messages that you got that were not written on any whiteboard. You knew to avoid it. It was a self-reinforcing edict: Don’t write about queers.”

Read the full article on History.

Fauci: Gay people lifted stigma with ‘incredible courage’ in HIV/AIDS epidemic

From the Washington Blade….

Dr. Anthony Fauci said Tuesday the visibility LGBTQ people brought to themselves during the height of the HIV/AIDS epidemic helped change the tide for public perception.

Dr. Anthony Fauci at a White house press briefing on Carnivorous

Dr. Anthony Fauci at press briefing

Fauci made the remarks during the daily White House Coronavirus Task Force briefing when responding to COVID-19’s disproportionate impact on black Americans, saying the disease has “shed a light” on health disparities in the United States much like HIV/AIDS did with LGBTQ people.

“During that time, there was extraordinary stigma, particularly against the gay community,” Fauci said. “And it was only when the world realized how the gay community responded to this outbreak with incredible courage and dignity and strength and activism — I think that really changed some of the stigma against the gay community, very much so.”

Read the full article.

Challenging HIV Stigma

Biomedical advances against HIV since the dawn of the epidemic have been nothing short of astonishing. An almost always fatal disease is now, for those with the privilege of access to treatment, a manageable chronic illness, treated with a single daily pill. A person who acquires HIV today has every reason to expect to live a normal life span.

Sean Strub
POZ Magazine’s founder, Sean Strub

Yet with such astonishing success in treatment, why is HIV stigma worse today than ever before? Why do so many long-term survivors, including many who were exceptionally open about their HIV-positive status for years, find they must now keep it a secret, sometimes going deeply into closets they thought they had left for good years ago?

Many people—especially those who do not have HIV—find these questions startling. That’s because they remember the days when one had to wear a spacesuit to visit a person with AIDS in a hospital or was afraid to eat in a restaurant with gay waiters or refused to touch a person they thought might have the virus.

Read the full article.

Trust and stigma affect gay couples’ choices on PrEP and PEP

From aidsmap.com

Both relationship-specific and structural factors influence whether coupled gay men living in New York City choose to use pre- and post-exposure prophylaxis (PrEP/PEP) for HIV prevention. Some men – particularly those in monogamous relationships – felt that discussing PrEP and PEP in the context of a relationship could threaten the relationship by raising issues of trust, while others felt that it had the potential to enhance sexual health and satisfaction.

Stigma from the gay community and healthcare providers around promiscuity also presented barriers to PrEP uptake. This qualitative research was conducted by Stephen Bosco, Dr Tyrel Starks and colleagues at City University New York and published in the Journal of Homosexuality.

Gay and bisexual men accounted for 66% of all new HIV diagnoses in the US in 2017. It is estimated that 35-68% of these infections happen within the context of a long-term relationship. This indicates that coupled gay men have the potential to benefit significantly from biomedical prevention strategies, such as PrEP (taken on an ongoing basis) and PEP (taken shortly after a suspected infection). However, only 7% of the potential 1.1 million gay and bisexual men who could benefit from PrEP were prescribed it in 2016. Black and minority men in the US remain most at-risk for HIV infection, while also having the lowest rates of PrEP uptake.

Read the full article.

The most insidious virus: Stigma

Stigma did not create AIDS. Yet it prepared the way and speeded its ravaging course through America and the world. First stigma delayed understanding of the disease: it’s a gay cancer, it’s a punishment from God, they brought it on themselves, so who cares? Then stigma delayed government action, research, and assistance for the sick and dying. Stigma made people afraid to get tested for HIV and treated. Stigma made people ashamed, isolating and alienating them from friends and family. Stigma cost people jobs, professional standing, housing, a seat on an airplane or in a dentist’s chair. Stigma made many afraid to live, and want to die. But then it began to make some brave people very angry and AIDS activism was born. The activists quickly realized that to end AIDS we must end stigma.

ACT UP protest at the White House on April 23, 1991

AIDS activism did more to fight the stigma on being gay or having AIDS than any other social force. In this way, AIDS activism, like the civil rights movement, became a great moral movement of our time, defending the innocent, restoring dignity to the violated, giving hope to the desperate, and reviving faith in the disillusioned. AIDS activism gave LGBT people courage, dignity, and power they had never held before.  It inspired many to stand up and proudly proclaim who they are and who they love. Twenty-six of the world’s most advanced countries now recognize gay marriage and today a gay man openly married to another man is a prominent candidate for President of the United States.

Read the full article.

Conversation about HIV is changing

By John-Manuel Andriote, author of Stonewall Strong

Let’s talk about drugs—specifically, drugs that keep HIV-positive gay men like me “undetectable,” and the drugs used in PrEP (pre-exposure prophylaxis) that, when taken daily, can prevent HIV-negative gay men (and others) from becoming infected.

John-Manuel Andriote

That’s essentially the theme for this year’s Gay Men’s HIV/AIDS Awareness Day—today, September 27—“The Conversation About HIV Is Changing: Talk Undetectable. Talk PrEP.”

But if we only talk about drugs to prevent and treat HIV, and don’t talk about the trauma behind gay men’s high-risk sexual and drug-use choices, we’ll see that same trauma continue to play out in our disproportionately high rates of crystal meth abuse, alcoholism, and other potentially harmful sexually transmitted infections besides HIV.

There is no question that today’s HIV drugs have dramatically changed the conversation about HIV. From the terrible illness and death that almost inevitably followed a positive HIV test 30 years ago, those of us living with the virus today can expect to live a virtually normal lifespan—so long as we adhere to treatment.

Read the full article.

Post a selfie to help end stigma

From plus online…

The campaign captures 24 hours in the lives of people affected by HIV stigma, which impacts everyone regardless of age, race, or status. The social media-driven campaign, now in its tenth year, is an opportunity for people to share a moment of their day and tell their story, while breaking down the barriers that stigma creates and raising awareness about HIV, as stated in a press release.

“Stigma can isolate and scare people,” said Positively Aware art director Rick Guasco, who created the campaign. “It can also prevent people from accessing care and treatment. A Day with HIV brings people together; it shows that we’re all affected by stigma, and that people living with HIV are just like everyone else.”

We encourage you to take a picture and post it to your social media with the hashtag #ADayWithHIV and include a caption that gives the time, location, and what inspired you to take the photo.

Images can also be uploaded to ADayWithHIV.com, where they will be considered for publication in a special section of the November/December issue of Positively Aware.

Check out some of last year’s photos

New survey examines health, HIV and human rights of gay men worldwide

From qnotes

OAKLAND, Calif. — MPact Global Action for Gay Men’s Health and Rights has announced the launch of its fourth global survey on the health and human rights of gay men, bisexual men and other men who have sex with men.

The 2019 Global Men’s Health and Rights Survey (GMHR 2019) focuses on factors that impact the health of gay and bisexual men around the world including discrimination, access to services, and the criminalization of homosexuality. The survey also addresses issues of mental health, freedom of gender identity and expression, and social connection and wellbeing which have all shown to be indicators of broader sexual health.

“We are very excited to launch the GMHR 2019 and to continue to collect information that allows us to advocate for the needs of community members,” said Sonya Arreola, Senior Research Advisor at MPact. “It is critical that we are amplifying the voices of those most marginalized in the global response to sexual health and human rights. We anticipate that this survey will provide insight into the lived realities of key populations locally and globally, including gay and bisexual men, transgender people, people living with HIV, sex workers, and people who use drugs.”

Last launched in 2014, the previous iterations of the GMHR survey yielded more than 10,000 responses from around the world, revealing vital information about the state of homophobia, human rights and access to health services worldwide. As in the past, this year’s survey is designed to support knowledge generation, policy development, program implementation, and advocacy linked to the issues that matter most to community members at the local and global level.

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Celebrating those who are aging with HIV

From the LA Blade
by Frank Gulli

I was living in the Castro in San Francisco in 1978 where optimism and liberation were in the air. Harvey Milk was an openly gay City Supervisor, gays and lesbians marched in the street for equal rights, and gay liberation was on display from Folsom Street to Golden Gate Park.

Frank Gulli

There was a real sense of belonging to a community. Our world shook when Harvey Milk and Mayor Moscone were assassinated by former Supervisor Dan White that year. Then it shook again when San Francisco became ground zero of the AIDS epidemic.

By 1985, the city was full of heartbreak and dying. My friends and I lived among it, terrified that we would be next. I was diagnosed with HIV that year, forever making 1985 a pivotal year.

Many of my friends who hadn’t been tested for HIV ended up in the ER at San Francisco General in respiratory failure. I was blindsided as an entire group of my friends and neighbors seemed to disappear overnight. There were no medical treatments, other than some antibiotics that seemed to prolong death for many.

For whatever reason, maybe by the grace of God, or good Italian food, I don’t know, I never got sick from HIV and I held on to hope for a better day. But my life and times would never be the same as it was back in 1978, before the shooting death of Harvey, when we felt liberated, before AIDS wiped out my entire phonebook.

Continue reading.

Living with HIV

From U.S. News and World Report

According to the Centers for Disease Control and Prevention, an estimated 1.1 million people in the United States are living with HIV. In 2017, 38,739 people received an HIV diagnosis, and when they first heard the word “positive,” many were thrust into feelings of anger, sadness, denial and fear.

“There are some people who suspect they are HIV-positive but go a very long time without testing, and then there are other people who test for whatever reason and turn out positive,” says Mallory Johnson, a clinical psychologist and professor at the University of California–San Francisco School of Medicine and co-director of the NIH-funded Center for AIDS Prevention Studies. “Those tend to be the extremes of the experience.” Disbelief and shock, Johnson says, are the most common responses.

Of those living with the virus in the U.S., about 14%, or 1 in 7, are unaware of their infection. HIV weakens the immune system by destroying cells meant to combat infection and disease; AIDS is the final stage of the infection, when the immune system has been severely damaged. Not all HIV-positive individuals will develop AIDS – antiretroviral therapies and other medications now allow people with the virus to live long, healthy lives.

Still, receiving a chronic diagnosis like HIV is likely to produce emotional distress. Here’s a look at the toll such a diagnosis takes, as well as how patients can tend to their psychological health.