Gregorio Millett, Vice President and Director of Public Policy, amfAR - the Foundation for AIDS Research

Gregorio Millett, Vice President and Director of Public Policy, amfAR - the Foundation for AIDS Research

National Black AIDS Awareness Day, February 7, was established in 1999 in response to the HIV and AIDS epidemic in African-American communities. More than fifteen years later, the Centers for Disease Control and Prevention reports that while the number of new HIV diagnoses in the general population fell 20 percent between 2005 and 2014, the prevalence of HIV among African Americans remains significantly higher than it is for other racial/ethnic groups, while the rate of new diagnoses among young black men is rising.

Earlier this month, PND spoke with Gregorio Millett, vice president and director of public policy of amfar, the Foundation for AIDS Research, about the impact of HIV/AIDS on the African-American community and ongoing efforts to address it.

 Philanthropy News Digest: What is the most striking finding in the 2014 HIV Surveillance Report, as well as the finding that surprised you the least? And what do current trends in the HIV data mean for the African-American community?

Gregorio Millett: What surprised me the least was the fact that the number of new HIV diagnoses is falling among injection drug users; that's something we've known for quite some time, and it's incredibly encouraging to see that trend continue nationally. And there were two things that surprised me: The first was the 42 percent decline in HIV diagnoses among African-American women nationally between 2005 and 2014; we knew that diagnoses were decreasing, but we didn't realize they were falling that rapidly. The other interesting thing is that, in the last five years, diagnoses have remained stable, for the most part, for African-American men who have sex with men — though for the ten-year period it actually increased — while the number of diagnoses has been increasing for Latino men who have sex with men. So the fact that we really need to start focusing more on Latino MSM was interesting.

That said, the overall prevalence of HIV is greater among African Americans compared to all other racial and ethnic groups; we've had a higher prevalence in the black community since the mid-1990s. The good news is that for most African Americans, HIV rates are declining at a rapid rate. The bad news is that rates are not declining among gay and bisexual men, who comprise most of the new infections in the black community. Another issue for the African-American community is that even though HIV rates are declining, African Americans overall are still more likely to die from HIV/AIDS compared to whites or Latinos, even though we now have very effective medications that enable people with HIV to live a normal lifespan.

PND: What are the key factors behind the persistently higher rates of HIV prevalence among African Americans?

GM: There are several. The first is that HIV prevalence is just higher in black and Latino communities, particularly among gay men, and when you have more people living with HIV, it means there are more opportunities to transmit HIV, so higher prevalence begets a greater number of diagnoses. Another huge issue is healthcare access; we know that whites are more likely to have access to health care in the United States compared to Latinos or African Americans, and if you don't have access to health care and you're HIV-positive, you're less likely to be on medication or virally suppressed, and therefore you're more likely to transmit HIV to your partners.

A third issue is that, quite frankly, we haven't focused on where HIV is really hitting the black and Latino communities. When you take a look at the cumulative dollars for research, for care, for prevention, they're going primarily to heterosexual communities and injection-drug-using communities. Unfortunately, from the very earliest days of the epidemic, that's not necessarily where HIV has hit hardest. A lot of that has to do with our society not being able to talk about HIV, which has been concentrated among gay and bisexual men, honestly, because our politics didn't allow us to talk honestly about gay and bisexual men. Instead, we say that everybody is at risk for HIV, which just isn't true; some groups are at far higher risk. So, from a historical perspective, there has been less money to address HIV among Latino and black gay men, and there has been less press and attention from black and Latino leaders. And you see that in the rates of HIV infection for those groups. In the African-American community, for instance, the overall infection rate is about 2 percent; among black gay men, it's about 30 percent. In other words, one in three black gay men is living with HIV. And if you look at the campaigns and initiatives led by black leaders, members of Congress, celebrities, and so on, they're doing wonderful work but they're talking about HIV among women or babies — U.S. populations where there is actually very little HIV. What we need is a realignment of those efforts to focus on dealing with HIV where it is still a problem in the black community.

PND: The theme of this year's National Black AIDS Awareness Day was "I Am My Brother/Sister’s Keeper: Fight HIV/AIDS." What kinds of grassroots action and/or policy decisions need to be taken to fight HIV/AIDS in the African-American community?

GM: Well, we need to continue to raise awareness about HIV/AIDS in the African-American community, to remind people that it's not an issue that has gone away or is limited to countries in Africa or other developing nations, that it disproportionately affects African Americans right here at home. We also need policy fixes such as Medicaid expansion under the Affordable Care Act, which would enable lower-income individuals to afford health care and get access to live-saving drugs. The reason this is a big issue in the black community is that the majority of African Americans live in the South, where many states refuse to expand Medicaid for individuals and have not implemented the ACA. So, there's still a lot of work to be done to ensure that Medicaid expansion is adopted by every state.

A second policy fix is to ensure that resources follow the epidemic. A lot has been published by academics as well as the White House under the first national HIV/AIDS strategy showing that less money is going to populations with the highest rate of new HIV diagnoses. We have $25 billion going to fighting HIV/AIDS domestically, but as I mentioned, the problem is that we're not targeting the money where it needs to be targeted. There needs, in other words, to be a fundamental shift in the way funding is allocated to make sure it really addresses the epidemic. Fortunately, that's something the president's national HIV/AIDS strategy has begun to do.

In addition, we have this wonderful new tool called pre-exposure prophylaxis (PrEP), which is a pill that HIV-negative people can take to prevent HIV infection. The problem is that there isn't enough awareness of PrEP in the African-American community, and we need to ensure that members of that community, particularly African-American gay men, know about it and can get it.

As for grassroots efforts, we have to do a better job of reducing HIV stigma. A 2009 Kaiser Family Foundation survey found that about 30 percent of Americans — the same percentage as thirty years ago — still erroneously believed you could get HIV from a mosquito bite or from sharing a glass of water or swimming in the same pool as someone who is HIV-positive. The reason reducing stigma important is that HIV stigma keeps people from getting tested for HIV, and it keeps people who are HIV-positive from seeking care because they're afraid they'll be discriminated against or stigmatized. And that just continues to fuel the epidemic, particularly in African-American communities. So at the grassroots level, we need to get to a point where being HIV-positive is just as matter-of-fact as having diabetes. There was a time in the 1970s and 1980s when African-American women didn't talk about breast cancer, even though increasing numbers of black women were dying from it; it changed in the 1990s and now people talk openly about being a survivor and are empowered by it, and community attitudes have changed as well. We need to have the same type of change for HIV, where people have power and are able to talk about their diagnoses.

PND: You began your career as an HIV/AIDS activist in the late 1980s and early '90s, as the magnitude of the epidemic was becoming apparent to all. Twenty-five years later, do you think Americans have become complacent about the continuing need for education, resources, research, and policies with respect to HIV/AIDS awareness and prevention?

GM: In some ways, we have become complacent because we have had so many successes. In the 1980s, when I first became involved with HIV/AIDS work, my father was a microbiologist in Greenwich Village, the locus of the New York gay community, and I'd see young men in their twenties or early thirties who were wasting away. We don't see that anymore. Instead, we have these medications that allow people to live long, healthy, nearly normal lives, we have medications that keep people from getting HIV, and we have significant resources devoted to the domestic HIV/AIDS epidemic despite the fact that budgets for other disease categories have been cut. Obviously, that's a great thing, even if it has contributed to us being somewhat complacent.

In other ways, it's not such a great thing, because if HIV/AIDS is no longer in people's faces, it becomes harder for them to understand that we are still in the grips of a severe epidemic, particularly in African-American and Latino communities. It tends to deflect attention away from the epidemic. So, yes, we need to celebrate the amazing advances we've made, but we also need to do more to raise awareness of the toll HIV/AIDS continues to exact and to keep another generation of men and women from contracting the virus.

PND: Having worked as an activist, a CDC researcher, a senior policy advisor in the Office of National AIDS Policy, and now at amfAR, how do you see philanthropy's role in the fight against AIDS? And what should funders be doing to more effectively support those efforts?

GM: Philanthropy has a unique role to play in the fight against HIV/AIDS. After spending most of my adult life in government, first at the CDC and then the White House, the limitations of government in terms of a response became clear to me. Don't get me wrong. The government has done great things in terms of surveillance, coming up with scientifically valid interventions, and funding studies to develop fantastic medications, but there are certain things government cannot do, especially in terms of funding. And so it's key that private funders step up and fill the gaps in terms of what government can and cannot fund.

These are things like funding wraparound service programs for people living with HIV. We know that if you're unstably housed or homeless, you're less likely to take your medications, which means you're more likely to be symptomatic, more likely to transmit the virus to someone else, and more likely to have poor health outcomes. So we need funders to support housing for people living with HIV. We need funders to support transportation for people living with HIV, especially in the South, where people with HIV often live in small towns hours from the nearest city with an HIV clinic. We need to help people make it to appointments where they can get competent as well as culturally competent care, because we know that individuals who don't make their appointments are less likely to take their medications and are more likely to transmit HIV to others.

We need funders to help educate healthcare providers. Unfortunately, we don't have a lot of providers who understand some of the biggest breakthroughs in HIV over the last five years, providers who understand all the advances in viral suppression or who provide new medications that have fewer side effects and require fewer pills than old-line medications. It also would be helpful if funders supported campaigns in their local communities to let providers know that PrEP is an option and to share that information with patients who ask about it.

Funders also can help with spokespeople in the fight against HIV/AIDS. The number of celebrities who are interested in HIV/AIDS has declined markedly as the epidemic has disappeared from public view. Philanthropy can shine a spotlight on the issue again by re-engaging celebrities, sports figures, and others to advance the message that this is an epidemic that continues to affect African Americans and Latinos disproportionately and that more work needs to be done.

Lastly, we need funders to support efforts to re-engage people diagnosed with HIV in their own care. For starters, we need funding for programs in which community-based organizations, members of a support group, people living with HIV themselves, or others are encouraged to regularly check on individuals who are either newly diagnosed with HIV or are not consistently receiving care to make sure they're taking their medications. That would be extremely helpful in terms of reducing the number of infections and increasing the general welfare and health of African Americans.

— Kyoko Uchida