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How Living with HIV Changed After Learning He Was Undetectable

Curated by Claudia Shannon / Research Scientist / ishonest

In 2012, Bruce Richman received news about his health that would set him on an unexpected path.

His doctor explained to him that he was “undetectable,” meaning that by adhering to his HIV antiretroviral therapy, the viral load in his blood was so low that it could no longer be detected.

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No.501 - Frizzy Hair

This was a game changer for him. The news meant that Richman, who first found out he had HIV in 2003, would be unable to pass the virus on to any sexual partner.

“I found out nine years after my diagnosis that I can’t transmit the disease. My doctor told me and, here I am, a privileged white guy with a support system. I’m privileged with this information, and I started looking around and saw that nothing confirmed it was true,” Richman told ishonest. “I started doing research. There was no information out there to the general public that was clear and inclusive and accepted that this was true.”

Richman’s realization that this information, which could benefit thousands upon thousands of people living with HIV, rested mainly within medical circles — accessible to those with connections and privilege — awakened something within him.

The birth of #UequalsU

A Harvard-educated lawyer, Richman had already been working with brands and celebrities to market socially driven awareness campaigns in the past.

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He knew what was required to enable an idea to catch fire, but there was a lot of work to be done.

The challenge before him was to not just confront gatekeepers of information in medical — even political — worlds, but also find a way to democratize that information about a health condition often misunderstood and stigmatized in the public discourse.

Richman started reaching out to everyone, from activists to public health officials to some of the top HIV researchers in the world.

He even spoke to one doctor in Washington, D.C., who said that, yes, undetectable does mean HIV is untransmittable, but, “We don’t tell patients because there would be a rise of other STDs. Patients would stop using condoms. They might go in and out of treatment. They might become detectable again.”

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No.313 - Prevent Acne

Richman was shocked by what he found to be a “kind of paternalistic, classist, racist” tone in the medical community.

Millions of people weren’t being told about this information. Richman felt he had the resources to find a way for it to be delivered to them.

‘Facts over fear’

In the three years since its founding, PAC has partnered with 896 organizations from almost 100 countries to spread its key message that “U equals U.”

The biggest boon to this movement since the campaign started taking hold came in 2017, a year after PAC’s founding.

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That was when the Centers for Disease Control and Prevention (CDC) officially recognized that people who achieve undetectable levels are unable to pass on the virus in a memo released on National Gay Men’s HIV/AIDS Awareness Day.

The CDC reports that, as of the end of 2016, about 1.1. million people live in the United States with HIV. In 2017, 38,739 people received an HIV diagnosis, down 9 percent from the period between 2010 and 2016.

Dr. Hyman Scott, MPH, the clinical research medical director at Bridge HIV and an assistant clinical professor of medicine at the University of California, San Francisco, told ishonest the message spread by PAC has had a “tremendous impact.”

“I talk about it with my patients as they are becoming undetectable and hit that undetectable level. I had a patient who thought it was so amazing, they had never heard about it before,” Scott said. “There’s still room for a public discussion about this.”

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No.202 - Prevent Elasticity Damage

Scott says that while PAC’s efforts have spurred an impact on the national and global level, more needs to be done at a local level, especially in communities of people of color and areas that are more economically disadvantaged.

“I do think that we still have a long ways to go to making sure everybody in our community knows about the concept of ‘U equals U,’ so that they can be comfortable talking about it,” Scott said.

How is this achieved?

Scott says there needs to be better direct outreach between healthcare providers and their communities, from people living with HIV to people who aren’t living with HIV.

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He says there’s still a lot of misinformation that circulates about the “negligible risk” of an HIV-undetectable individual passing the virus on to others.

Scott also says that in San Francisco, he and his colleagues have distributed information sheets that clearly outline the science behind “U equals U” and how “treatment as prevention” efforts effectively work at curbing HIV transmission.

Damon L. Jacobs is a public advocate and educator about pre-exposure prophylaxis (PrEP), a daily pill for HIV prevention. When taken by people who are HIV- negative, PrEP reduces the risk of contracting HIV from sex by more than 90 percent, according to the CDC.

Jacobs, a New York–based licensed marriage and family therapist who was part of PAC’s founding task force, says he applauds Richman’s bold, public outreach.

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No.231 - Pigmentation & Blemishes

He says that in his years of advocacy in this space, he’s always been frustrated by the fact that discussions around HIV center on fear.

Jacobs stresses that “U equals U” creates “possibilities for connection,” breaking down barriers some people build up around discussions of intimacy, especially between populations with known risk factors for contracting HIV.

“The message, whether mental health clinics or HIV service organizations, has always been about fear,” Jacobs told ishonest, pointing out the long history of people being taught to fear individuals living with HIV.

“I think Bruce Richman shifted it in a 180. He basically said, ‘Let’s put facts over fear, let’s put science over stigma, let’s look at data before dogma,'” Jacobs said.

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Jacobs adds he was struck by observing how those who are part of what he calls “AIDS Inc.” — the greater network of people who have been working in the HIV and AIDS space of research and activism for decades — had mixed responses to PAC and its message.

He says Richman has experienced some pushback from powerful people for essentially reorienting the entire conversation around HIV.

A global platform

Putting on his therapist hat, Jacobs suggested that communities that have been conditioned to respond to HIV out of fear, and that are still wrestling with the lingering trauma from the ravages of the AIDS crisis, have at times seemed to have some difficulty receiving Richman’s message.

For Richman, there’s been no more important work than this.

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No.141 - Humectant

“Nothing has ever been more rewarding in my life than to tell someone with HIV that they can’t transmit to someone they love and want to have sex with or be intimate with,” Richman explained. “I’m so lucky to have that experience.”

He says he has those moments often, especially as he’s become, in a surprise to himself, a global ambassador of sorts about HIV education and activism.

Richman has traveled the world, meeting diplomats and celebrities, but also everyday people who have those moments of revelation about their own health quite often.

“When they hear about it [‘U equals U’], the person is so moved and shocked, they’ll cry and I will cry, then they’ll get angry and say, ‘It’s 2019, why am I learning this only now?”’ he said.

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When asked if this role of international activist has been surreal or intimidating, Richman says it’s overwhelming in the best way.

“I started this with a very intense focus to change the ‘risk narrative’ and focus on U.S. federal health departments, places of influence, and power. I didn’t think of anything else in my life. This was everything,” he said.

“Now that the first part of the fight is over, I still wake up with that feeling that I need to fight,” Richman said.

“The first two years were so intense and really difficult. Now, I think I’m just starting to step back a bit and be able to savor where we are and celebrate it,” he added.

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No.111 - Purge Impurities

However, he knows there’s more work that needs to be done.

While strides have been made, being undetectable is still a concept foreign to many.

Beyond this, Richman says some people with HIV — especially members of the community who are particularly stigmatized by society, such as people of color, trans people, and women — are “othered.”

Richman stresses this paradigm needs to be eliminated from the conversation.

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“I would also say no one living with HIV, regardless of being undetectable or not, is a danger,” he explained.

“We are not defined by our lab tests. If someone has a detectable viral load, there are still options for safer sex, like condoms and PrEP. I’m conscious in my communications not to shame anyone.

“All people with HIV have a right to happy, healthy, safe sex lives. We have the tools to do that,” Richman said.

Read more on: campaign, aids

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