As we go through this conference and these challenging times, this framework could be a reminder for us to connect with what matters most. We’re living in overwhelming times. Every day there is a new flurry of attacks that seek to undermine our work and our values. We live in times that are full of distractions from our purpose. So I like the formula in this poem, because it gives us permission to release the distractions and the things we cannot control, and to pledge ourselves to what does lie in our sphere of influence.

What I want you to do is take a picture or write down this formula. And before you leave this conference, I want you to complete the formula with your own words. In the first two lines, release yourself from two expectations that have been placed on you, or that you’ve placed on yourself. And in the third line, “you only have to…” what I’d really like you to do is to firmly commit to one action, one value, one guiding principle, one northern star that may be a light to you in dark places, when all other lights go out.

Yes, that last part was a line from Lord of the Rings. Don’t mess with Galadriel!

For me, this assignment might go something like this:

Trans and gender-diverse people exist. We always have. We always will. That is the truth.

And for me, at this point in my life, telling this truth is not hard. As a trans, nonbinary person, I live this truth. I’ve made a commitment to living my truth out loud in my work. I remember when I first added my pronouns to my email signature: they, she or he (intentionally in that order). I was immediately labeled “unprofessional.” And that hurt. It hurt that I dipped my toe in to test the waters, and I got burned. But just as soon as the critics spoke out against me, my community—including allies—rode forth to protect me. And it ultimately became a teaching moment, where something that was previously misunderstood gradually became accepted.

As someone working in HIV clinical trials, I enjoy working within a vast, global community of scientists, providers, advocates, and other members of the HIV and scientific workforce who speak the language of truth. I’m talking about evidence and facts. I’m talking about statistics, for example, how HIV prevalence among trans and gender-diverse people is estimated to be about 20% worldwide.

This fact serves as a reminder that we can’t end the HIV epidemic if we don’t end it for everyone, which means we simply cannot tolerate the exclusion of transgender people from our efforts in any way, shape, or form. As people working in HIV care and research, the truth is central to all that we do.

But…

The truth isn’t always easy to speak out loud. I want to be really clear about that, because I’ve titled this talk, “You only have to tell the truth,” which implies that speaking the truth is a simple task. But there is a difference between the simplicity of the guiding principle, the northern star, “tell the truth,” and actually doing it. Let’s come back to that in a moment.

The focus of this opening plenary is on person-centered care. Let’s take a closer look at how person-centered care is defined and its key components.

These are some of the key components of person-centered care from the literature. We could probably sit with this definition and these components for quite a while. Maybe you want to capture these so you can continue to reflect on how these components apply to your everyday practice. But what I’d like to offer is a guiding principle that threads through all of these components. A single message that I hope we can all remember and carry forward with us through and beyond this conference:

Telling the truth IS person-centered care. Honesty underpins each of the key components that define person centered care: collaboration, empowerment, dignity and respect…

And withholding or distorting the truth is antithetical to person-centered care.

Let’s talk examples…

• An international survey of over 1,000 providers found that nearly a quarter of ID specialists and almost 60% of primary care physicians withheld information about U equals U from their patients when informing them of their undetectable viral loads. Reasons for withholding U=U information included disbelief of the evidence supporting U=U and concerns about patients’ behavior if they were informed about U=U.
• Another 2019 survey of about 350 providers here in the US Midwest found that half of providers agreed that patients would engage in “sexual risk-taking behaviors” when relying on viral suppression for HIV prevention. 61% did not feel comfortable counseling patients that an undetectable viral load was sufficient to prevent HIV transmission without condoms or PrEP.

More recently, a colleague of mine wasn’t comfortable with the language of certainty around U=U and said to me, “we know what the advocates are saying, but we need to stick with what the science says.” This statement was particularly concerning to me in that it positioned the advocacy of people living with HIV in opposition to the science and evidence…as if advocates shouldn’t be considered reliable sources of information, nor taken too seriously. When in fact, the advocates in question knew the science better than their critics.

Here's what the science says:

“No HIV sexual transmission risk exists for people with sustained viral suppression. Longstanding, misguided fear about HIV transmission persists; consequently, so does the policing of sexual expression and the penalization of pleasure faced by people with HIV. Withholding information about U=U is thus rooted in behavioural assumptions and is scientifically unfounded. Moreover, withholding such information violates medical ethics, perpetuates health inequities, and infringes on the sexual health and human rights of people with HIV.”

In other words, telling the truth is person-centered care. You see how honesty and the truth underpins all of the key components of person centered care? Without the truth and honesty, care cannot be collaborative or empowering. It can’t be fused with respect or dignity. Telling the truth about U=U is holistic and focused on quality of life. It centers the health, wellbeing, education, rights, and pleasure of all persons. Withholding the truth about U=U centers one’s own biases, assumptions, and comfort.

And yet, despite what the science says, and despite its importance to person-centered care, still not everyone has committed to telling the truth. In one of the referenced provider surveys about U=U, one provider said, “I just believe there is a risk.”

This raises an important point: there are different kinds of truth! Some have even been known to say there are different kinds of facts: real ones…and alternative ones!

But the great astrophysicist, Neil deGrasse Tyson, says that there are three kinds of truth. 

The provider referenced in the survey who said, “I just believe there is a risk,” is at the first level of truth, what deGrasse Tyson calls personal truth. Another example of personal truth would be those who say that the earth is flat. There might actually be some validity to the notion, but it’s only really found in the realm of personal truth. One can understand that an individual might look out upon the Great Plains of the Midwest and say, “It looks pretty flat! And therefore, because it looks flat to me, the earth is flat.” That’s a personal truth. It’s not guided by rigorous studies or measurements or input from other people or different vantage points. It’s just an individual observation, a personal truth.

deGrasse Tyson says there’s another kind of truth, one that he calls “political truth.” And I know we’re all tired of hearing about the politics of the present day, so I’ll give an example of political truth from the 1600s. According to religious doctrine at the time, the earth was at the center of the universe, and everything, including the sun, revolved around us. So when Galileo promoted the theory of heliocentrism, that the sun was the center of our solar system, based on evidence and his scientific observations, the church doubled down on its version of the truth—for political reasons. If they were shown to be wrong about the nature of the universe, it meant that other aspects of their doctrine could be wrong too, and therefore they stood to lose political power. So they doubled down on the earth being the center of the universe to avoiding losing political power. DeGrasse Tyson would call this political truth, a commitment to a version of reality based on an investment in power and control, not evidence or empirical investigation. The church imposed, by force, this political truth of the earth being the center of the universe. Galileo was tried for heresy, threatened with torture, and placed on house arrest for the rest of his life. As another famous scientist, Albert Einstein said, “what is right is not always popular, and what is popular is not always right.”

deGrasse Tyson’s third level of truth is objective truth. We know that the earth is round, we know that it revolves around the sun, and we know that U=U based on objective, reproduceable, peer-reviewed evidence. As deGrasse Tyson puts it, “science is true whether you believe it or not.”

As people working in HIV healthcare and research, we can all think of times where “personal truths” and “political truths” have shaped decision-making, sometimes at the cost of objective, scientific truth. But it’s not happenstance that the work of HIV care is and must be grounded in the third level of truth, objective truth; it is so because people’s lives depend on it. Telling the truth—the objective truth—is person-centered care. Listening to people and their own goals for their health and wellness. Centering pleasure, not morbidity. Empowering people with information so they can make informed decisions for themselves. This is what telling the truth and centering people looks like.