Embracing a Broader Population, Not Erasing AIDS: Government Official, Living With HIV, Reflects on the Name Change to 'HIV.gov'
June 27, 2017
Last year, eight million people went to AIDS.gov to find information about, well, HIV/AIDS. But from this point forward, those millions and more will instead find themselves at HIV.gov. After years of planning, the central United States government website on HIV/AIDS has changed its name to reflect the changes of the fourth decade of the epidemic, when people with HIV who receive effective treatment can expect a near-normal life span, and those without HIV can prevent acquisition through multiple means.
TheBody.com had the pleasure of chatting with Richard Wolitski, Ph.D., director of the Office of HIV/AIDS and Infectious Disease Policy at the U.S. Department of Health and Human Services, about the significance of this change. As someone who has been living with HIV since the era before effective treatments, Wolitski brings both a personal and professional perspective on this moment.
JD Davids: On a personal level, as a long-term survivor of HIV, what does this name change represent for you?
Richard Wolitski, Ph.D.: I remember back when I was just diagnosed in '94. During that time, I would go to the medical library several times a week, pull out general articles and read every new study that came out. I really made a significant investment in trying to figure out what the options were for my own care.
Today, honestly, I can barely keep track of the name of the medication that I'm taking. I don't even really bother with that, because I don't need to worry about it.
And so, I feel like today, HIV has become something for many people that doesn't become all-consuming; it's not the main focus of their lives. The focus of their lives is living -- having relationships, their career, their families, school. And so, today, HIV is still a serious health issue, but if people are getting the right medical care, it doesn't have to be something that overwhelms the rest of their lives.
Living with HIV should be about living!
JD: But sometimes people have felt erased by changes in terminology. What message would you say to long-term survivors who are living with AIDS and have lived through so much, in this moment?
RW: The most important thing to stress is that people living with HIV include a diverse group of individuals, including those who are recently diagnosed, as well as those who are long-term survivors and have been living with HIV for decades, many of whom developed AIDS at times in the past. So, this is not to erase; it's more inclusive than the terms "AIDS" was.
We're not erasing AIDS -- we're trying to really encompass the broader population of people whose lives have been affected by this virus.
In a way, it's leaving behind some of the baggage of people facing the epidemic, when we had one picture of what the epidemic was like, [and] we only recognized that people were affected when they went on to develop AIDS. And so, we were dealing with the end stages of the disease; one profile of the epidemic.
But, frankly, we talked about it in overly simplistic terms and didn't full address the diversity of the impact of the epidemic at that time.
JD: What would you say to someone who is finding out about this name change and is newly diagnosed with HIV at the same time they receive an AIDS diagnosis? What's it like today to be diagnosed with AIDS, and what's the message you're sending to those folks, too, who are newly diagnosed with AIDS?
RW: I think that when we're talking about HIV, it's inclusive of everybody. It's important that people who are living with AIDS, or who are newly diagnosed with AIDS, not feel like having AIDS means somehow they've failed, or their health care system has failed them, or that they're going to die, or sometimes the end is in their future.
The reality is that the treatments we have today are so powerful that they have a dramatic impact on the health and the longevity of people who start them -- even if they start after they've been diagnosed with AIDS. We know that the medications work best when they're started early, but they still work well for people who begin them after a diagnosis of AIDS.
I would not want them to feel hopeless or depressed, when the reality is that current HIV treatments are working really well for everyone across the continuum of HIV disease.
I was speaking with a physician not too long ago whose opinions I really trust. And he said to me: "Really, if someone's not virally suppressed, something is wrong. Either that person is not on the right regimen, or they need to be supported in a different way around their experience."
The potential is there for the medications to get everyone virally suppressed. But it takes the right care, and it takes the right support for people living with HIV to make that happen.
JD: What could affect the progress that we've made?
RW: I worry that when we talk about the progress being made, we somehow misunderstand that it has only occurred because we have so many people who have been diagnosed and are in care, and who are virally suppressed. If any of that changes, if fewer people are virally suppressed, then that progress would be erased very quickly and we could go back to the epidemic of the mid-1990s.
The only way that we're going to be able to achieve additional progress is by further increasing the numbers of people with HIV-negative status, and the numbers of people who are in care and who are virally suppressed.
There are a lot of barriers to people staying in care. It is not easy work. And so I'm worried that some people hear "progress," or they hear: "OK. We've gone from HIV to no deaths. So, AIDS: checkmark; checkmark; finished." And they move onto other stuff.
The reality is that every person with HIV still has at least some of the virus in their body, and they could experience a rebound if they are no longer able to access HIV treatments.
JD: How does this name change feel on a personal note, as someone living with HIV?
RW: This name change really embodies the new sense of optimism that I personally have about seeing an end not only to AIDS but an end to the HIV epidemic as a whole. When we talk about seeing "the end of," it really means no new HIV infections and no people going on to develop AIDS.
I'm optimistic that the science has really given us the most powerful tools we've ever had to stop transmission. And now, it's really the challenge of making those tools available to save the lives of people living with HIV, and to stop the spread of HIV, in this country and around the world.
JD: Do you remember any moments in your work as bold moments, when you were like, "Oh! It's going to be about HIV"?
RW: Because when I look back at AIDS in the early 1990s, I look back at the incredible amount of hope, the really naïve hope, that if we just kept on fighting and if we worked harder, someday it would be over.
So, for me, I've always had this belief and this idea that if we could just keep going a little longer, the end would come. But I do have to admit that I've been frustrated on a personal level. You know, we have these tools; we have effective therapies for people, now. But we still have so many people who are dying; we still have so many people who are getting infected. And it doesn't have to be that way. And so, that is frustrating.
I think now, with treatment as prevention, I see a whole new range of possibilities. We're now at the start of a new era that changes not only how we think about prevention, but changes how we think about what it means to be living with HIV, what it means to be in a relationship with somebody's whose status is different from our own. And I think it fundamentally changes what we think about stigma.
JD: What about the lack of data on transgender people and HIV; what happens next to fill the gaps?
RW: I think with transgender persons, there are going to be a number of important sources of information, beyond just the regular HIV case report data. I think that we're going to get our best data on the impact of HIV, and what it means to be living with HIV for transgender persons, from some of the more detailed studies and data sets -- the Medical Monitoring Project (MMP), for example, and we're hoping also to get additional data from the National Behavioral Risk Survey. And I think, you know, the Health Resources and Services Administration (HRSA) has been doing a good job, in terms of looking at the outcomes and experiences of transgender people in the Ryan White program.
We're looking at how best to get that information and to make use of that information in a more timely manner.
This transcript has been lightly edited for clarity.
JD Davids is the managing editor for TheBody.com and TheBodyPRO.com.
Follow JD on Twitter: @JDAtTheBody.
This article was provided by TheBody.
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