Despite that HIV diagnoses have fallen slowly in recent years among black people — 25 percent in women from 2010 to 2016, 26 percent among straight men, and 5 percent among gay/bisexual men — the virus continues to impact the population in disproportionate numbers. While black people comprise only 13 percent of the U.S. population, they account for 43 percent of all HIV diagnoses, according to the Centers for Disease Control and Prevention.
This year on National Black HIV/AIDS Awareness Day, it’s time to broaden HIV education to not only reach black queer populations, but their families, friends, and health professionals as well. After all, everyone plays a part in helping to eradicate the virus — and we can do it if we come together.
If there’s one person who can attest to the power of community, it’s Greg Millett.
As vice president and director of public policy at amfAR, Millett has had significant experience working at the highest levels of HIV policy development at both the White House and the CDC. Growing up in New York City in the 1980s, his dad worked in St. Vincent’s Hospital, which at the time was ground zero for HIV.
By the time he graduated Dartmouth, he had at least 20 friends who had died of AIDS complications. That’s when he and his community of black and Latino gay men decided to do something about it by getting involved in work around safe sex and education about HIV. Together, they attended ACT UP meetings and started learning about local and federal policies. These years lead him to get a degree in public health where he eventually fell in love with research, and thus began his career as a scientist with the CDC.
A black man living with HIV himself, Millett was also one of Plus’s Most Amazing Poz People last year. Recently, the scientist spoke with Plus about the past, present, and future HIV outreach:
How important is it to have people of color in the research team and in the health industry? Do you think it changes perspectives in strategy?
It does and it doesn't. It does in the sense that it provides some sort of cultural framing and background for certain things. I remember when I was in school of public health in North Carolina, and we were speaking with a team of researchers who were trying to more black women to be involved in exercise classes. They said that they were having trouble getting black women involved, and we asked, "Well, have you spoken to any black women about issues in terms of hair care and everything else? Because if you have perm and you have sweat, it ruins a very expensive hairdo that you have." These researchers had no idea about that. In that sense, it was extremely helpful.
Also, for me, by the time that I came on the scene and we kept seeing these exploding rates of HIV among black gay men while at CDC, the main narrative was that these men are engaging in very high rates of risk behavior. I did not see that from the accumulated data from studies beforehand — nor any of the studies that I had at CDC. That's where I built my career in trying to change the narrative among scientists to say: "This isn't about risk behavior. It's about greater rates of HIV within this community." So you have a greater community prevalence that's placing these men at risk, but they're actually engaging in lower rates of risk behavior compared to white gay men.
That tilt in perspective can change a lot.
In those regards, I do think it's helpful to have communities of color represented among scientists just to help frame what's [actually] going on. Or they might see certain things that are happening. I definitely don't believe this type of work, particularly research in communities of color, is solely the domain of scientists of color. I know incredible scientists not a part of this community who are doing such incredible work, who are really chipping away at why we see greater rates of HIV in the black community that I think is incredibly novel and innovative. Quite frankly, we're dealing with an emergency here, and we need as many minds as possible to really help solve this problem.
Which HIV education strategies have you seen work, and which have you seen that failed?
Strategies that haven't worked have been some of the behavioral interventions that CDC traditionally had in the ‘80s and the ‘90s. Interventions where they would try and reduce what they would call risk behavior — unprotected sex, the number of sex partners, drug use, etc. The problem with a lot of those strategies is that black gay men were already engaging in less unprotected sex and had fewer sex partners than white gay men, but the rates of HIV were still higher. So you had this paradox that was taking place: They were also less likely to use drugs at the time, particularly any club drugs or methamphetamine.
[Still,] that wasn't explaining the high rates of risk behavior, and those strategies were not helpful. It was great when CDC started to finally pivot away from those strategies for this population because they realized through my research and research of others that that's not the reason why we're seeing these high rates of [contraction].
The strategies that do work are really dealing with social determinants of health, dealing with some of the structural inequalities, not having access to healthcare. If you don't have access to healthcare, you're less likely to be on antiretroviral medication if you're HIV-positive, which means you're less likely to get virally suppressed, which means that you're more likely to transmit HIV to your partners. Also, access to healthcare means you also are more likely to get tested for HIV. And if you're not tested for HIV, you don't realize that you're HIV-positive, [then] you unwittingly transmit HIV to your partners. You see that often in black communities and particularly among black gay men where there are high rates of unrecognized HIV [contractions].
Also, a lack of access to PrEP right?
Pre-exposure prophylaxis [PrEP] is an incredible innovation, and would be helpful if scaled up, but you find that communities of color are less likely to [practice PrEP] compared to white communities in the United States. That's another part of the reason why we see these exploding rates particularly among black gay men. We really need to deal with some of these social determinants, which we started doing with the passage of the Affordable Care Act where you see more black gay men getting health insurance, more black gay men who are getting PrEP, more black gay men who are actually receiving antiretroviral therapy.
A lot of those types of interventions, particularly health insurance, is under threat right now. We have a new administration that doesn't necessarily believe in the Affordable Care Act, that wants to roll back pre-existing conditions as a determinant of getting healthcare, which can have dire consequences.
Living in New York City, I see advertisements for PrEP almost daily on subways and radio spots. Do you think that’s helping target the communities it needs to reach?
Honestly, I think there's so much need in making sure that people understand that [PrEP] is a medication that's out there that can actually reduce or actually prevent HIV infection at astonishing rates, 99 percent or so. The funny thing is that most of the American public doesn't know this.
There was a study the Kaiser Family Foundation found that a plurality of youth, young people are at high risk of HIV, particularly in people of color, never heard of pre-exposure prophylaxis. I think that Gilead is doing the right thing by really trying to increase the awareness about it. And where I think it's helpful is two ways: One, for those people who have friends or others in their community who they know may be at high risk, might be gay or bisexual or transgender, having your mother, your sister, your brother, somebody say, "Hey, I heard about this pill called PrEP, I saw it on the T.V. or heard about it on the radio. Is this something you're considering taking? I want to make sure that you're okay and that you're healthy and that we prevent HIV." Something to that degree is going to be helpful by widening the message.
I also think that widening the message is helpful for those groups who don't necessarily identify as gay or lesbian. If you're only advertising in lesbian and gay magazines, you're going to miss men who have sex with men who don't identify as gay. Even though their risk for HIV is less compared to men who do identity as gay, there's certainly men who don't identify as gay who are at a high risk of HIV and do get HIV — and unawarely transmit to their male or their female partners. Broadening the message also reaches that group of men as well, who you may not necessarily get through the gay media. That's extremely helpful.
How important is it for celebrities to get involved in the fight against HIV?
It helps amplify the message to many different groups. You need to have different types of messengers to carry the same message. And sometimes a particular messenger is more likely to get that message through than another messenger. For instance, dealing with our current Congress, instead of me as a black gay man going to a Nebraska seat in the House of Representatives, a grandmother from Nebraska might be a better representative in conveying an HIV message. You find the same thing with celebrities. Celebrities are going to reach people and break through to certain groups more so than perhaps other communities. I think it's really a value-add to have them involved.
What other barriers do you think interfere with educating the community about HIV, and how can we overcome those? Does homophobia play a factor?
I think one of the biggest barriers is the fact that HIV isn’t as visible in the media any longer. It's an issue that has been relegated to something that takes place over there, usually in sub-Saharan Africa. It's not necessarily an issue here. You don't see people who are walking around the streets with [Kaposi's sarcoma]or any other visible signs of HIV that you used to see. People with HIV are living normal and healthy lives, which is something that we should all be very thankful for with the advent of the new medications. But I think the side effect of that is that it's not as visible to the American public any longer.
There's a belief that this is something we have addressed and it's not necessarily an issue, and that's a problem, particularly when we're not even close to getting to zero rates of new [contractions] anywhere really in the United States at this moment, particularly in communities of color.If we still have this belief that HIV is no longer an issue here, it certainly effects what takes place in Congress in terms of funding for HIV both domestically as well as globally, which is part of the reason we have to keep putting pressure on congressional officials, through the media. It's really shown a light how the HIV epidemic persists in the United States, but despite the fact that it's not as visible as it used to be.
Can you give us a reason to be optimistic in the future for people who might look at what's happening around them in this political climate and feel a bit lost or scared for their future healthcare?
I think the optimism we do have is that for the most part, at least recently, HIV is becoming more of a bipartisan issue. It certainly has been that way for global HIV. It's increasingly becoming that way for domestic HIV as well, particularly with the opioid crisis and you're seeing large numbers of people who inject drugs or numbers of people who inject drugs who unfortunately are being diagnosed with HIV — particularly in red states in the United States where congressional officials who previously didn't think that this was necessarily an issue for them are now having to confront this.
There are certain things the president is saying that we're seeing in the administration as well that's going to be helpful for people living with HIV. There are now efforts afoot to reduce drug costs in the United States across the board. And that's certainly going to be helpful for people living with HIV in terms of being able to afford certain drugs, making sure that their insurance is able to put them on drugs that could help get them to viable viral suppression. Many more people being able to get access to these drugs if it's less money for them insurance-wise, and that's certainly something that's helpful.
What about U=U? How do you think we can get that message across as well in a way that resonates as strongly as PrEP?
One thing that we keep seeing over and over again is that despite being in the midst of this epidemic for 30 years, there's been little impact in terms of HIV/AIDS stigma. A lot of the same biases we’ve seen for people living with HIV from the 1980s persisted up until maybe about seven, even eight years ago. Now, we're starting to see a precipitous change in that. Some of that change was really heralded by PrEP, particularly in the gay community. We used to have essentially these HIV ghettos. We used to call it HIV apartheid where positive gay men only dated positive gay men, and negative gay men only dated negative gay men. With the advent of PrEP, that completely changed the calculus where HIV status is not necessarily as limiting factor for dating any longer.
I think that U=U also has the same possibility for reducing HIV/AIDS stigma where people living with HIV are no longer looked at as vectors of disease; where people would understand that being undetectable means that you have essentially zero risk of transmitting HIV as long as you remain undetectable and on your [meds]. I think the extension of that message is something that we're definitely going to see in the future.
The thing we need to take a look at is that being undetectable is not the goalpost now. Continued viral suppression is the main goalpost because there are data that CDC announced during the last black HIV/AIDS Awareness Day that were really concerning for a lot of us: Among all people living with HIV in the United States, about 52 percent of us were not continuously virally suppressed. That's a problem. And the CDC also found that it didn't matter which demographic group of African-Americans who we're looking at compared to whites — be it men, women, youth, gay men, transgender individuals, people who inject drugs. African Americans were less likely to be continuously virally suppressed as compared to their white counterparts in each one of those groups.
If we don't have continuous viral suppression, then we will never be able to end AIDS in the United States. We need to make sure that people who are living with HIV are not just virally suppressed, but continue to be virally suppressed for the extent of their lifetime and have that through affordable healthcare, making sure that mental health counseling, as well as drug counseling, is available for those individuals who need it, and making sure that there's access in transportation to healthcare services because we get health insurance largely through insurance through employment in the United States, making sure that PWAs are gainfully employed. So, there are many things we need to do to make sure that people living with HIV are consistently virally suppressed.