Is Our Understanding of AIDS Regressing?

In 1985, the viral plague called acquired immune deficiency syndrome (AIDS) was surging, decimating the gay community. The disease inspired fear of the unknown, making a tragic set of circumstances even more unbearable.

That October, the rugged movie star Rock Hudson passed away from AIDS. Concern turned to the health of his recent co-stars, including those on the nighttime soap Dynasty with whom he shared a few supposedly intimate scenes. Reports began about actors refusing to work with others suspected of having AIDS. They feared that they could be infected with the disease through casual contact or kissing, which are now understood to have no fundamental risk of infection.

Decades later, scientists have given the world far more understanding of AIDS and HIV, the virus that causes AIDS. AIDS prevention organizations have multiplied. On World AIDS Day – Dec. 1 each year – the international community comes together to fight HIV and support those living with it.

Surprisingly, however, many people living with HIV are finding that attitudes today about these infections have regressed to the era of ignorance. They see people with this viewpoint on dating websites, hook-up apps, and in the mass media.

One example is Jenny McCarthy’s reaction in 2015 to Charlie Sheen revelation that he had HIV. She said on her radio show: “I look back and I’m like, ‘OK, that would have been some valuable information.’ Look how many people have played his love interest on the show. I mean, not that you can, obviously, get it through kissing, but still, that’s a big deal.”

Spreading updated information on HIV and AIDS is not particularly popular, but using AIDS as a tasteless punchline seems widely acceptable. On TV’s Family Guy, for example, a barbershop quartet sings “You’ve Got AIDS” to a hospital patient.

Three performers in the entertainment industry – Daniel Garza, Brisco Diggs and Daniel Berilla – know this situation intimately. Each is out, proud, HIV-positive, and has no qualms about letting their co-workers or anyone else know. Here are their stories.

Innis Casey Photography. Courtesy Of Daniel Garza and Lilmesican Productions


Daniel Garza

Daniel Garza, an AIDS educator and advocate as well as an actor and producer with his own company, Lilmesican Productions, reports that he was diagnosed in September 2000. At that time, he said, his T-cell, or CD4 cell, count was 110. Anyone whose count is under 200 is considered to have AIDS.

“Once my T-cell count began to improve,” Garza says, “I was re-diagnosed as just having HIV. But I still consider myself an AIDS survivor, which makes me feel like a superhero!”

Back then, Garza recalls, he didn’t know much about AIDS.

“By choice, I only knew the basics,” he says. “I wasn’t fully informed, so I figured the less I knew, the better off I was. Now, in hindsight, I see this was my whole ‘protection shield’ – if I didn’t know too much, I would be OK.”

When his illness was first detected, he says, “My biggest worry at that time was whether I could walk out of the hospital on my own, because I was so weak, and would I lose all my hair or would it grow back?”

It wasn’t until several months later, while living in San Antonio, Texas, that his trip to a medical center linked to the federal Centers for Disease Control and Prevention opened his eyes.

“I had to go to the center for some tests, because I was also on some meds for tuberculosis and they were not working. There, I finally met with a counselor who enlightened me about stats and numbers and blood counts, T cells and viral loads,” he says. “That’s when I finally became more knowledgeable. It’s one of those things that, once you know the information, you can’t ignore it.”

This new understanding led him to volunteering. “That’s when my advocacy and activism started,” he says.

Since then, he’s become a committed advocate for those who have the disease and an outspoken educator on the subject. He regularly speaks to community groups and to audiences at schools and colleges, and his message is: “AIDS doesn’t need to be an automatic death sentence anymore, but it is something that needs to be protected against if it’s to be, at last, wiped out completely.”

 

Photo courtesy Of Brisco Diggs And Angel Sanchez

Brisco Diggs

Actor Brisco Diggs, who is naturally optimistic and enthusiastic, has his own tales to tell. His work includes the films 3 Times a Charm and Rent-a-Gay. Diggs credits his upbeat attitude for seeing him through some alarming times.

“I am undetectable right now,” he says, meaning that his viral load, or the amount of HIV in a blood sample, is below the levels that lab tests can measure. “I used to worry about getting hurt or cutting myself around people and stuff like that, but now that I’m undetectable, I feel much better.”

Diggs was initially diagnosed as HIV positive. Not long after, when his doctor re-took the blood test, it was determined that his T cells were below 200, which meant he had full-blown AIDS.

Since then, his T cells have risen again and, because he didn’t get any opportunistic infections, his diagnosis was re-classified as AIDS-related complex.

“Then it changed back to HIV, so I was very confused, to say the least!” he says.

This led Diggs to do some research in order to better understand these changing findings and how he was being diagnosed.

“This was back in July 1994, so the level of understanding overall wasn’t at all what it is now,” he says. “They didn’t have the ‘cocktail’ [a combination of medications] quite yet, so they had me on AZT and something called DDI [didanosine]. But back then, I was advised to get my affairs in order.”

Making matters worse, whatever medicine they tried led to side effects.

“I was allergic to everything!” he says. “But I stuck in there, and soon the different cocktails began to come out, so we eventually found something that worked.”

Diggs, too, knows the stigma of being HIV-positive – both in the 1980s, when he lived openly as a young gay man in New York City, and now.

Growing up in the Bronx, where machismo ruled, especially for men of color, Diggs says that being different from that norm could draw unwanted attention and consequences.

“But I was openly gay — I always have been and I’ve always been myself,” he says. “So when this happened to me, when I realized I was positive, I did not care about what people were going to say. I figured they could say what they want, but because I’ve heard the worst news of my life, they can’t hurt me, because I’m living with the enemy inside my body. Therefore, I was always very open about this.”

Later, when he moved to Los Angeles to pursue his acting career, he let everybody know his status.

“Every time I made a new friend, they knew,” he says.

Whenever he’s working on a new film or TV project where he might be required to do something potentially risky, he says, being upfront is always appreciated. He actively seeks out the medic on the set early on, “and I let them know, just in case.”

 

Daniel Berilla as ‘The Assistant’ in Guys Reading Poems. Photo: Michael Marius Pessah. courtesy of Hunter Lee Hughes and Fatelink Productions

Daniel Berilla

Garza and Diggs were diagnosed back when much about the disease was still being discovered. Daniel Berilla, however, comes from the generation that followed.

Berilla is best known for his roles in the gay indie features Eating Out: The Open Weekend, Going Down in La-La Land, and most recently, the 2016 film Guys Reading Poems.

He belongs to the generation to which the LGBT community should have given more sensitivity and safeguards, according to popular wisdom, but he is one of many in his age group for whom that hasn’t necessarily been the case.

“When I learned I was infected with HIV in 2009, my awareness of it was minimal,” he says.

He grew up with a conservative religious background, so any kind of sexually transmitted disease, let alone one perceived to be a gay affliction, simply wasn’t discussed.

“I didn’t know anything about any kind of STDs or anything like that,” he explains. When he was diagnosed, he says, “I freaked out. I didn’t know what it was! I then did research and found this was like the worst of the worst.”

He emphasizes that although this was not so many years ago, medications like “PrEP” (pre-exposure prophylaxis) and PEP (post-exposure prophylaxis) remained in their infancy and were not widely available.

“At that time, there was basically nothing to protect yourself with except a condom, so I had no idea what was going to happen — nor any idea what my friends might think, or what my family was going to think — or even what I was going to tell my family. I was completely petrified!”

Attitudes about AIDS

So what do these men feel accounts for the apparent shift in attitudes about the disease? Those in the popular media seem to either not be discussing it at all, or worse — using HIV and AIDS as fodder for some tasteless joke.

“I’m continually shocked whenever I hear some outwardly ‘educated’ people—whether in front of a camera or behind a microphone — giving a voice and airtime to these opinions!” Diggs says. “… As for those that ignore AIDS completely, I think, because now people are living longer, some are content to live with their heads in the sand and pretend this doesn’t exist anymore. But when somebody comes out and is open about it, people don’t like to hear about it. It’s unpleasant.”

He compares those who have this attitude to those who say that it’s OK for a person to be gay, so long as they “don’t make a big deal about it.”

“It’s the same way with HIV,” he says. “It’s OK as long as we don’t have to hear about it — meaning we don’t want to hear about it!”

Berilla says, “I can’t speak for people who lived in the ’80s, because I’m only 28 and was barely just born when they ended, but I can say that the stigma has gone back and forth. But now, even though PrEP is out there and people are taking that, every sign points toward so much fear persisting — and misunderstandings and presumptions made — primarily when it comes to the dating aspect of being HIV-positive, much less trying to be in a serodiscordant relationship,” in which an HIV-positive person dates a person who is negative.

Berilla says he has tested a theory on various popular dating apps by including his positive status on his posted profile. “I’d put that I was positive and that I’m on meds,” he says.

Every time he’s done this, he says, he’s gotten few to no hits, except for maybe a handful of responses from other HIV-positive individuals.

“I’m not necessarily saying I’m positive to solely attract other guys who are positive,” he says. “I am saying it so people will see that I’m being absolutely honest, because I know if something developed on down the line that somebody wouldn’t have to ask.”

Once, he says, he removed any references to his positive status and kept everything else the same, including the photo. He was fairly inundated with responses.

“Once I saw this happen — and realized why it’s happening, I thought, that’s crazy!” says Berilla, who is on antiretroviral therapy. “… A lot of people don’t care what you look like, they just see that one word, positive, and they immediately think, ‘That’s a road I don’t want to travel.’… So yes, I know firsthand that the stigma is still there!”

Many doctors and more than 500 AIDS-related organizations have endorsed the following statement about the risk of HIV transmission: “People living with HIV on antiretroviral therapy with an undetectable viral load in their blood have a negligible risk of sexual transmission of HIV. Depending on the drugs employed, it may take as long as six months for the viral load to become undetectable.”

Garza understands Berilla’s feelings. “Just because I’m upfront and unembarrassed about my status doesn’t give people the right to use it against me” he says.

As an AIDS educator, he’s always on the lookout for a “teaching moment.” So when he feels belittled or put down, he says, “I try to understand that it’s not about me. … They’re just not informed.”

He tries not to return the hostility.

“I try to say ‘Hey, hold on — here are some facts,’ and short of pulling out my PowerPoint presentation, I can set them straight and let them take it as they will,” he says. “I like to think of this approach as like a ‘smallest candle can light the darkest room’ kind of thing. Even if they only hear a quarter of the things I’ve said and the facts I’ve presented them with, hopefully a difference has been made in their lives.”

Back in 2001, he says, he felt discriminated against in an emergency room by a medical professional — someone who should have known better.

“I had to go to a hospital, and when the nurse saw on my paperwork that I had AIDS – because that’s what I was diagnosed with at the outset – she put me in an isolation room by myself, fearing I might be a danger to others.”

Diggs had a comparable experience. In 2015, he cut his finger, which required a trip to the emergency room.

“I was with someone I looked at as a close friend, and I assumed that he understood things,” he says. “Then I cut my finger, and it was very bad, but when we went to the hospital he actually left me there!”

Diggs is careful to make clear that his hand was fully wrapped up to ensure that his friend was in no danger of coming into contact with any blood.

“But he just took off and left me alone!” he says. “I later found out he was scared that he could get HIV from simply being ‘around’ my blood!” He says his friend was in a position to be far better-informed.

“I was surprised that he didn’t know better! Bear in mind, too, that I’m very open about all this, so I figured that this person knew my situation. But when it gets right down to it, that didn’t help him from becoming truly scared. That incident was really eye-opening for me – that there’s still people out there that think you can get HIV so easily.”

The media’s role

When it comes to shaping perceptions of AIDS, Berilla says, the media can go a long way toward helping or hindering progress.

“If the media today put more attention towards this issue – or some high-powered celebrity really got on board with promoting greater AIDS and HIV awareness,” he says, “I think the stigma would be far less today than it is.”

Diggs feels that the media is doing our community a disservice by largely treating HIV and AIDS as not especially threatening anymore.

“I understand that, as a whole, neither ailment is as much of a menace as they used to be for people who were infected earlier on,” he said. “But now they have a strain of HIV that’s drug-resistant, so why are they making it appear that everything’s fine for everybody – which is simply not true?”

He cites situations in which some people are not able to have any medications (because of allergies, other medical conditions, or the fact that for some patients, medications are not effective).

“For the most part, the media today – including the gay media – are not talking about this stuff. They’re just talking about how people are living longer and they’re hyping an unrealistic, ‘Pollyanna-esque’ viewpoint. But they’re not talking about those who are still dying, because it doesn’t fit this feel-good narrative.”

The popular media, he says, may be doing more harm than good by their reticence to show both sides of this issue – the good and the painful.

AIDS complications

Then there’s the complex topic of AIDS-related complications, which few realize are another major factor involved with being HIV-positive.

“What we’re also not discussing is that there are complications and that people are still dying from those,” Diggs says.

Garza knows these complications, which are often tied to having a compromised immune system, only too well. Over time, he’s been diagnosed with tuberculosis, kidney stones and AIDS-related cancer.

“Those of the millennial generation have – or have been given – this perception that it’s ‘not that bad,’ but then when some high-profile person like actor Alexis Arquette dies, they’re suddenly asking ‘what happened?’– and more pointedly, ‘how did this happen?’ They’re utterly unaware that we have all these side effects and secondary issues. And it’s these other complexes that complicate HIV and AIDS, which nobody is talking about either!”

That’s why, Garza says, he is sure to include this aspect of being infected with HIV in every educational presentation he gives.

“I tell them about cancer, and I tell them about depression, and I talk about high-blood pressure, cholesterol, and heart murmurs. Right now, my HIV is under control, but there’s everything else that you might have to deal with,” he says.

Test regularly

All three men advocate regular testing, whether or not you think of yourself as at-risk.

“I – one hundred percent – feel if you think it might happen to you, it’s better all around for people to get tested regularly,” Diggs says. “I was diagnosed in ’94, but I believe I was infected back in the ’80s, because that’s when I was very active sexually. So if I would have known earlier, I could’ve gotten what treatment was available much sooner. Testing regularly is the best thing!”

Garza concurs: “When I go to high schools, colleges and universities to talk to students about HIV and AIDS prevention,” he says, “not only do we talk about abstinence (which is possible for some people, without a doubt) but in the more realistic world, most students are having sex, so once we’ve gone over the modes of transmission, I let them know that if you’ve engaged in anything like we’ve described, you should get tested. And if anyone asks – and usually they’ll ask after class – I refer them to the three-month window between infection and the point when any test will give an accurate result. So that kind of settles it in their head: If you’ve done anything in the last couple of weeks, you should go get tested!”

Berilla says: “Everything I’ve been through has made me a strong, independent kind of person. But if I didn’t have this, it would be a whole different life. So of course, I strongly advocate for people to get tested—not just for their own peace of mind, but for those they’re about to experience something with — girls and guys! It’s always way better to know your status than to not. For one thing, there’s no harm in doing that, and another, if you have it done, you have a better chance of not harming someone else.”

Talk more

Diggs and Berilla also support Garza’s actions in spreading the good word. Indeed, Diggs feels that increased awareness can be achieved once society picks up where we left off around the turn of the millennium, when subjects like marriage equality and getting “Don’t Ask, Don’t Tell” repealed overtook the national headlines. He wants to re-start the dialogue about where we are, where we’re going, and how we can put an end to this disease.

“People need to talk more,” he says. “HIV has been put on the back burner essentially because more people are living with it—but it’s more multi-layered than that! I think the government needs to do a lot more in terms of education and to keep this at the forefront.”

Garza says: “One of the best things the average person can do is talk — initiate a conversation. Find a person who is HIV-positive or who has full-blown AIDS, and ask them questions out of a sincere desire to understand. Once they do, they’re sure to find that it’s not just about T cells and viral load and the latest medications. For every support group or new medical breakthrough, there’s also still stigma and secrecy. There are drug and alcohol troubles related to it and mood disorders like depression and anxiety. They should hear about … someone who is HIV-positive whose family may have disowned them, or somebody who is on disability and who has nobody to talk to, or maybe somebody who was healthy all their lives who suddenly finds that HIV has affected their heart or nervous system or whatever—the average person should hear those stories!

“I think a lot of people are scared to ask these questions, so I strongly urge everyone to fight that fear, resist that resistance. Get up and call somebody with HIV or AIDS or ARC and tell them you don’t just want to talk — you want to learn, you want to know! They’re sure to tell you stuff that you can’t find on any blog or simply read in any article. Someone who lives with this every day can tell you what it’s honestly like. When this happens, I know people’s perceptions of HIV, AIDS and ARC will change.”

For more information:

Basic information about AIDS: https://www.cdc.gov/hiv/basics/whatishiv.html

AIDS research, events, federal response to HIV, and general topics: https://www.hiv.gov/

Consensus statement on HIV transmission: https://www.preventionaccess.org/consensus

AIDS Service Foundation of Greater Kansas City: http://asfkc.org/