Humans of TCGMC: HIV Dialogue – Experience

Humans of TCGMC: HIV Dialogue – Experience World_Aids_Day_Ribbon

JOSH: I WOULD LIKE TO HEAR FROM THE OLDER GENERATION REGARDING SEXUAL ETHICS. WHENEVER YOU ENGAGED IN SEX WITH SOMEONE, HOW DID YOU APPROACH THE TOPIC OF HIV? HOW FAR BACK DOES “UNDETECTABLE” GO?

David: I’ve been undetectable since about the 3rd month of my treatment. Late 90’s.

Glenn: I remember when my T-cells started dropping just as the antiretrovirals were coming available. They didn’t really talk about undetectable in the early days. It was not until the late 90’s, and at that point it was, “How are your T-cells?”

Carlos: I want to ask a clarifying question about being undetectable. Did that also come with the understanding that undetectable was at associated least reduced risk?

Glenn: Not of transmission. Not until about 2 years ago.

JOSH: I WAS IN A CLINICAL TRIAL FOR DESCOVY, WHICH WILL EVENTUALLY REPLACE TRUVADA FOR PREP. THE DOCTORS TOLD ME THEY USED TO SAY THE RISK WAS “NEGLIGIBLE” OF SOMEONE UNDETECTABLE TRANSMITTING THE VIRUS, AS OPPOSED TO NOW, WHEN THE RISK IS ZERO. UNDETECTABLE = UNTRANSMITTABLE. BUT WHAT WOULD YOU TELL YOUR PARTNERS?

Glenn: I just became celibate for a long time, because I was terrified of it.

David: I think the expectation was that you disclose your status, and so I tended to gravitate toward people who were positive –

Kevin: – Serosorting.

David: I was really appalled when somebody didn’t tell somebody. I thought it was really unethical on their part. And someone I really respected said, “You know, there are two people involved in that act, and people have a responsibility to take care of themselves. And that really lowered my blood pressure. I have no patience for people who chase bugs, I have no patience for people who think it’s interesting to intentionally infect people. Those are beyond unethical – those are just wrong. I don’t feel horribly stigmatized, but I do tell them, “It’s really expensive! Think this through! I have really good insurance, and I would like the money I spend on this damned disease for something else.” Some of these are fatalistic. “I know it’s going to happen eventually, so why don’t I get it over with?” You know, it’s not really the fraternity you want to belong to.

Kevin: But once you’re there, it’s something that shouldn’t make you think your life is over. When I was diagnosed, I felt like, “I’ve lost the possibility of a naval career, I’ll never find love.” Like people coming to terms with their sexuality, with HIV, it gets better, too. I had one thought, based on something David said. Positive people, we’re often put in the position of people assuming we have responsibility over more than our own sexual health. The burden is on us to disclose, rather than someone else to bring up the conversation, or to ask themselves, “When was my last test?” The onus is on each person for their own sexual health. And everyone should know that having an undetectable HIV-positive partner is essentially as safe as having an HIV-negative partner.

Carlos: Potentially much safer!

Kevin: Much safer than someone who doesn’t know their status. You should ask, “When was your last test?” And maybe some more probing questions. That’s the thing. David, in ‘98 took 3 months to get to undetectable, and even a little quicker – 30 days now. If someone is on treatment and is adherent to their medication, they become undetectable. So how is HIV spread? Because people don’t know they’re positive.

Glenn: I’ve been undetectable for 30 years, and my doctors are always like, “Oh my god!” I’m compulsively compliant with my medication. I have a handful I take morning and night. Part of that is side effects like diabetes and cholesterol.

JOSH: WHAT ABOUT YOU, CARLOS?

Carlos: I have a single pill once a day. I think of it as taking a daily vitamin.

JOSH: ANOTHER FRIEND FROM THE CHORUS, WHO GOT DIAGNOSED AND TREATED QUICKLY, TOLD ME HIS PILL IS THE SIZE OF AN IBUPROFEN. THAT IS A MIRACLE TO ME.

Kevin: And for a lot of folks getting diagnosed today, that is the first line of treatment. But I think for longer-term survivors, there’s more medication – more pills – to manage.

Glenn: My HIV doc has always been my primary physician for 30 years. Last year, he said “You need to find a different primary.” I said, “Isn’t there any research being done on HIV in old people?” And he said, “Yes, but you need a new primary. You guys are getting old. Our focus is HIV. And you guys are now dying of heart disease and other age-related illnesses. So I had to go find an additional doc.

At this point, David asks about the specific medications each member takes. Surprisingly, each uses distinct medications with different formulations. They then compare side effects.

Kevin: The obvious thing with U=U is that it’s freeing. But I also want to put in a quick plug. As much as we should be spreading the gospel of U=U, we should also make sure not to bring out further stigmatization of someone’s detectable or undetectable status. Especially for long-term survivors – some who have had AIDS diagnoses – who may not be able to get to undetectable viral load because of the damage the virus and toxic meds did to their bodies over the course of decades.

David: I know that one of the things that goes on is when someone dies from AIDS, my first reaction is “Why? There’s no excuse in this age why that should be going on.” That’s not really an accurate statement.

Kevin: Yes. The state of our healthcare, access, especially for black and brown people. There are very systemic issues at play that need to be addressed for us to reach a place where no one dies from complications of AIDS, or where we have zero new HIV infections.

David: And it’s how our bodies respond to various medications.

Glenn: A lot of people can’t afford the $7,000 I pay out of pocket every year. HIV drugs are not generic, and so you pay a lot of money for co-pays. And I’m on Medicare!

JOSH: THIS NEXT QUESTION IS EXTREMELY PERSONAL. WE OFTEN THINK OF THE YOUNGER GENERATION, WHO BENEFIT FROM THE STRUGGLES OF THE PAST. DAVID AND GLENN, YOU’VE PROBABLY SEEN MANY AROUND YOU WHO HAVE DIED OR BECOME SERIOUSLY ILL. DO YOU EVER HAVE SURVIVOR’S GUILT?

Glenn: That’s what I talked about during Two Boys Kissing. People left behind. We’re the ones who lived to tell about it. I don’t think about that very often. I just read something on Facebook about, they’re calling it a syndrome now about survivor’s guilt. What do you think?

David: I choose not to live with guilt. I do have an immense amount of sadness for people who have not survived. What that has done for us is that we have a hole in our generation of massive numbers of people. Some of our lore as gay men, and some of our appreciation to how we got to where we are has just been lost. I have an immense amount of sadness about that, and anger.