It’s literally the plot of a blockbuster movie. A man living with AIDS faces cruel discrimination that costs him his job. He and his lawyer are the underdogs in a high-stakes courtroom drama to right wrongs and make a powerful employer pay for its actions. It’s a battle every step of the way.
That movie, “Philadelphia,” is a story about stigma.
This year marks the 25th anniversary of “Philadelphia,” a film that helped bring about a major shift in the public perception and media representation of HIV and AIDS. Tom Hanks — in his first Oscar-winning role — helped personalize and humanize the epidemic through his portrayal of Andrew Beckett, a gay man living with AIDS and Kaposi sarcoma.
And Denzel Washington’s portrayal of Joe Miller, the lawyer who initially refused to take Beckett’s case, showed the world that people who at first feared AIDS could change, growing empathy and compassion.
The last 25 years have brought enormous changes to the HIV community, and to the perception of HIV around the world. The movie “Philadelphia” was one of many factors — along with activism, awareness campaigns, research, and more — that helped chip away at the stigma of HIV. And yet, while attitudes have shifted, there’s still work to be done. Even today, discrimination and fear persist.
I wish I could say that the stigma was a relic of the past that exists only in movies. But that’s not true. Sadly, the HIV stigma is real, and it still plays out in the real lives of many people.
Just this year, OUTserve, an organization that advocates for LGBTQ service members and veterans, filed two lawsuits challenging the U.S. military’s current policies that prevent people living with HIV from enlistment, deployment, or commissioning as an officer. In both cases, qualified service members were denied opportunities because of their HIV status.
Years from now, we might be able to watch the movie version of this sad real-life situation — but the people living through it have to deal with the consequences right now.
The powerful effects of HIV stigma are real, and employment discrimination is among the most obvious examples. But stigma exists in other forms, too.
In what ways does the HIV stigma still exist today? It’s a question I wanted to examine with the HIV community in a larger context, by speaking directly to those living with the virus and those affected by HIV and AIDS. So, I reached out to leading HIV advocates, along with my own social media community, to look for answers.
This is what I learned.
What is the HIV stigma?
Everybody talks about stigma but no one ever defines it. I asked people to share how they define the HIV stigma, and how it affects them personally.
“The HIV stigma is unnecessary judgment and discrimination placed on those who want nothing more than a life without the virus,” explained Jennifer Vaughan, an advocate based in Watsonville, California, who was named one of Plus magazine’s most amazing HIV+ people this year. “I’m definitely affected on a daily basis by what I read through social media where HIV stigma still festers with a 1990s mentality.”
Daniel D. Driffin, an HIV advocate based in Atlanta, Georgia, who holds a master’s degree in public health, told me, “HIV stigma is the negative devaluing of someone living with the disease.”
He explained that the stigma is “unique and complex” because it can occur in different ways, including in communities, at points of care, and through self-stigma.
Driffin runs the nonprofit Thrive SS, which works on a peer support model to build networks for people living with HIV across the country. These supportive networks are one of many ways to fight stigma.
“HIV stigma relies on miseducation, fear, and denial,” he said. “As a person living with HIV diagnosed in the South, more than a decade ago, I have experienced stigma and shame at different moments.”
How has the stigma changed?
The HIV advocates I connected with told me they believed the HIV stigma first originated from a fear of death. It was part of the anxiety of an illness that had such a devastating impact during the early years of the epidemic.
Charles Sanchez, a New York City-based advocate and the creator of the comedic web miniseries MerceTheSeries.com, told me that the initial stigmatization of HIV seemed almost inevitable. “Fear is a normal reaction to a deadly disease,” he said, “and especially at the beginning of the crisis when we knew so little about the virus.”
But over time, advocates told me that the stigma shifted and changed. One major difference that I noticed was in the way that long-time advocates, who survived the early years of the epidemic, talked about stigma compared to those of us who were diagnosed more recently.
This year, for the first time, I took a close look at a digital version of the AIDS quilt. Long-term survivors are the people who helped make the real-life quilt. I had the opportunity to research some of the stories and people behind the individual quilt panels, and it altered the way I look at stigma.
One panel of the AIDS quilt is for Robert Nathan Fain. He was one of the first health writers to report on AIDS for the Advocate. He died from AIDS-related complications in 1987, after being abandoned by his family because of the condition.
It’s a tragedy, and at the core of it is stigma.
From my perspective, the stigma of HIV has shifted in part because current treatments are so effective. Of the more than 35 million people who have died in the AIDS epidemic, I don’t know one. I feel fortunate that I’ve never had to attend the funeral of a loved who has died from AIDS-related complications. I think that makes my experience of stigma somewhat different from those who lived through the early years of the epidemic — who lost loved ones and who witnessed the fear of death that existed during that time.
But that’s not to say the stigma that persists today is any less real. Long-time advocate and award-winning writer Mark S. King, who describes himself as an HIV-positive addict in recovery, explained his views about the difference between current social stigma and the initial fear surrounding the epidemic.
“Social stigma today toward those of us living with HIV is actually much greater than it was when I was diagnosed in the 1980s,” King told me. Back then, he said, people were so traumatized by learning about their diagnosis because they were afraid of death. “And it was a death sentence at the time. People kicked out their positive roommates or disowned their family members not because of stigma, per se, but because they were deathly afraid of HIV and of contagion.”
“Fast forward to 2018, and we now know that HIV can be a manageable condition, but social stigma has increased dramatically,” said King, who also runs the popular blog My Fabulous Disease. “The cruel anonymity of the internet has revealed the ugliness of stigma, from rude rejections on dating apps to vicious remarks in comments sections.”
HIV stigma online and in real life (IRL)
Like King and Vaughan, my social media community agreed that the HIV stigma is pervasive online — and it hurts.
One individual living in the suburbs of Chicago, who requested anonymity, told me over private messages that even on a popular gay dating app, the stigma persists. “I use Grindr to try and meet or talk to other gay guys,” he told me. “If I have my status on my profile... no one will talk to me.”
Social stigma also happens beyond the internet, IRL in face-to-face interactions.
“I know a young man who lost his job because he disclosed his status last year,” Maureen Nabwevuma, a health information specialist based in St. Louis, Missouri, shared with me over Twitter. “He wanted to save and pay for university and all his dreams ended there.”
Even today, stigma still has real life-or-death consequences. One individual, who wished to remain anonymous, responded to my questions through private messages with a story about an ex-partner who “was so scared of what others thought he literally had to be on his deathbed, dying of AIDS-related opportunistic infections, before he would admit to himself he might have contracted the virus.”
It’s a heartbreaking story and a telling sign that the stigma still runs deep — and that there’s plenty of work still ahead for the advocates among us.
“Now, although science has made HIV a manageable condition, the stigma is still so prevalent,” lamented Sanchez. “It’s like we have this scar across the entire society, always reminding us of the looming shadow of AIDS and the shame of those who are infected. I was diagnosed in 2003 while living in Little Rock, Arkansas, and it took me years to get over my own stigma about my own condition.”
The power of U=U and ending the HIV stigma
There were only two things that I knew about HIV when I was first diagnosed: I knew “Philadelphia” and I knew Magic Johnson. And I knew that Magic Johnson was still alive.
It may not have been much, but it made a difference to me. And I believe that greater education and awareness can make a huge difference when it comes to fighting the HIV stigma.
We live in a time when HIV can be treated and managed so effectively that people diagnosed with HIV can reach a point when the virus is undetectable in their blood tests. People need to know that. People need to know that in this day and age, HIV should never be a death sentence.
The question remains, while HIV still exists, will we ever be able to completely end the stigma that surrounds it?
There’s no easy answer, but I believe the UequalsU movement is a source of hope. UequalsU, or U=U, stands for “undetectable equals untransmittable.” It represents the consensus of the medical community that when HIV is undetectable in the body, it can’t be transmitted. That means a person living with HIV who has an undetectable viral load can’t transmit the virus to anyone else.
Today, the U=U consensus statement has been signed by 766 organizations in 95 countries. And for World AIDS Day this year, Canada became the first country to sign on to the statement. It’s my hope that more countries will soon follow.
As long-time advocate Bruce Richman told hivplusmag.com, “This historic and heroic step to sign Canada on to U=U and challenge other federal health ministers worldwide to do so will change millions of lives.” He explained that for Canada’s health minister to sign on sends “a clear message that sharing the news about U=U with people with HIV and the public is an urgent priority to save lives and fight stigma, and we all must take action.”
The HIV stigma still exists today, but there’s hope. There’s hope in all the work that has been done to raise awareness and breakdown the stigma. There’s hope in the U=U movement. And there’s hope in all of the people who continue to live their lives with HIV because we won’t let the virus — or the stigma that surrounds it — hold us back.
Josh Robbins is a writer, activist, and speaker who is living with HIV. He publishes an award-winning HIV advocacy and buzzworthy opinion publication at I’m Still Josh. Connect with him on Twitter @imstilljosh.