HIV 'Undetectable = Untransmittable' Is a Game-Changing Fact. Why Isn't the Message More Public?

Contributing Editor
Housing Works' head Charles King with one of the U=U dance partygoers
Housing Works' head Charles King (left) with one of the U=U dance partygoers
Getty/Lars Nikki

On a Sunday afternoon in late April, there was a small but buoyant dance party at the fairly new outdoor AIDS memorial in New York City's Greenwich Village, which had once been ground zero of the AIDS epidemic.

New York City's openly gay health department assistant commissioner Demetre Daskalakis was on hand as one of the DJs, as openly HIV-positive folks such as NYC councilmember Corey Johnson and Housing Works founder Charles King boogied down to jams like the Notorious B.I.G.'s "Hypnotize."

As Mary J. Blige might say, there was definitely no hateration going on up in that dancerie!

U=U dance partygoers
Getty/Lars Nikki

The reason for the party? It was to celebrate and promote the fact that we now know with certainty that people with HIV whose meds make the virus undetectable in their blood (as confirmed by lab tests) cannot transmit the virus to sexual partners. In New York City, a host of organizations -- including the health department and Housing Works -- have been part of an effort in recent years to end New York State's AIDS epidemic by 2020. Now, they're rallying behind the Undetectable = Untransmittable or U=U message, which is the national rallying cry of the Prevention Access Campaign.

In recent months, a stunning array of prominent international agencies and individuals have signed onto a U=U consensus statement saying that, based on modern science, undetectable people cannot transmit HIV. They include AIDS United, GMHC, the Human Rights Campaign, the International AIDS Society, the UK's National AIDS Trust and the National Alliance of State and Territorial AIDS Directors (NASTAD), to name just a few.

"U=U is such incredible news that we've been saying we should be dancing in the streets about it," says Bruce Richman, who started Prevention Access Campaign. Richman says he's been eager to get the U=U word out since he learned in 2012 that because he was undetectable he was not infectious. (He was diagnosed with HIV in 2003.)

Charles Sanchez at the U=U Dance Party at the AIDS Memorial, NYC! #UequalsU #EndAIDSNY2020

Posted by on Sunday, April 23, 2017

Even since then, scientific evidence for U=U has continued to mount in a series of very large studies, such as one released early last year finding that among nearly 900 serodiscordant (one HIV+, one HIV-) gay and straight couples followed over 16 months, there was no evidence of HIV infection despite their having condomless sex.

This has massive health, prevention and legal implications. It means that HIV-positive folks and their HIV-negative sexual partners can all but stop freaking out about the possibility of transmission. It also renders even more outdated various state laws from the 1980s and 1990s that criminalize HIV-positive people for endangering sexual partners when they don't disclose their HIV status. Finally, it should serve to reduce the stigma suffered by HIV-positive people, who are often made to feel as if they are second-class citizens for carrying an infectious virus.

But despite all that -- and despite the fact that U=U has essentially attained global scientific and advocacy consensus -- national, state and local entities still do little to broadcast this fact to the general American public. A brief review of the main HIV webpages for health departments nationwide serving those states and cities hardest hit by HIV found that not one stated in clear language that people with undetectable HIV were incapable of transmitting the virus.

The Centers for Disease Control and Prevention (CDC) site says that people who are undetectable "greatly reduce" their chances of transmitting HIV, which is true, but such cautious language is more in line with what we knew from data almost a decade ago. Richman says he's in touch with the CDC and expects that we'll see messaging changes soon.

Even states that mention PrEP (pre-exposure prophylaxis, or taking the HIV med Truvada [tenofovir/FTC] to prevent getting HIV) or the fact that pregnant women on meds can prevent HIV from passing to their children made no mention of U=U among sexual partners.

New York State, which, along with California, has usually put out the most current HIV messaging in the country, says that being undetectable "decreases but does not eliminate" the chance of transmission. Moreover, the Mayo Clinic, one of the more prominent health info sites online, doesn't mention U=U at all on its HIV prevention page.

"None of the websites are saying this, none of the marketing campaigns," says Richman. "I've found that people who know this information tend to be privileged, have private insurance, are often white. That is so unjust that information that concerns are our social, sexual and reproductive health and lives is being withheld."

Not Yet Popping Up in Popular Culture

Richman can become very passionate when talking about how little the HIV health establishment has done thus far to make U=U general knowledge. "When I realized that the power structure thought people with HIV were irresponsible and couldn't understand this info, I was furious," he says. "This information changed my life, lifted my feelings of shame and being toxic. That was so freeing."

"Everyone," he adds, "should clearly have that information."

Families were out doing flips for U=U
Families were out doing flips for U=U
Getty/Lars Nikki

Popular culture, which has done so much to get out the message that HIV medications can create normal lifespans, has yet to jump on the bandwagon, save for a powerful episode of the TV show Transparent in which Shea, an HIV-positive transgender character, explains to Josh before they (nearly) have sex that she is HIV-positive but also undetectable.

Richman says he is talking to people at the Gay and Lesbian Alliance Against Defamation (GLAAD), which has worked with TV shows before on incorporating info-packed HIV or LGBT storylines, about trying to get the U=U message out via Hollywood content.

But it's not just pop culture. States and cities, with a few exceptions including New York City, appear slow to put the message out there in a broad public way.

Calling on States to Broadcast the Message

NASTAD is influential in setting HIV policy among states. Recently, it clearly affirmed its position on the fact that undetectable people do not transmit HIV.

"This is the latest understanding of the science," says NASTAD communications staffer Meico Whitlock. "We need to settle the lack of clarity, say that this science is conclusive and more clearly articulate this message."

Whitlock says that NASTAD is calling on states to more explicitly broadcast this message, to advocate for decriminalizing HIV-positive people having sex based on this data, to continue to offer services to expand viral suppression among HIV-positive people and to transmit directly to those who are HIV-positive the message that they are not "disease vectors" and, in Whitlock's words, "you can have a happy, healthy, safe sex life."

But are states following suit?

In North Carolina, Jacquelyn Clymore directs the state's efforts on HIV and other sexually transmitted infections. She says that the state is sharing the U=U message among providers and patients throughout its HIV care infrastructure, but it has not yet embarked on a more public campaign. She says it's likely they will soon, but for budgetary reasons will work from a preexisting campaign.

Clymore's counterpart in Hawaii, the health department's Peter Whiticar, says it's unlikely they'll embark on a major public campaign: They rarely do them, he says. Instead, they will update the language on their website. He says that they are already reinforcing the U=U message through the network of HIV/AIDS case management care they contract with -- partly to incentive patients to stay on treatment.

"It's a huge release of anxiety and guilt for people to know they can't transmit HIV if they're virally suppressed," Whiticar says.

Richman says he thinks we'll see more explicit U=U messaging in coming months.

"It's still really new for a lot of people," he says. "In December, we were still fighting just to get places to sign on to the consensus statement," never mind to promote it, he adds.