Today, on World AIDS Day, I am sharing an edited version of the speech that I gave at the opening plenary session of the 2nd National HIV Prevention Conference in Atlanta, Georgia in August 2001:
It is a real honor and privilege for me to address you. This afternoon, I want to share with you some of my insights and experiences as one who is often put into the role in which I am here at this opening plenary session, as a representative and spokesperson for many diverse communities. I hope that sharing my experiences and insights will give you some food for thought as you move through this conference. Perhaps if each of you ask some of the questions that I have been asking myself, it will help you frame this conference in a way that will help you go back and continue to do the very important work of HIV prevention that you do.
To begin, I do not stand here as an individual but as someone who represents many communities and many important people in those communities. I want to recognize my co-workers, my colleagues and my partners in the comments that I am making.
I also want to ask you to participate in that recognition. It’s something that we haven’t done enough of – which is to recognize all of you – as the leaders, as the frontline workers in fighting this epidemic. Here we are 20 years into the AIDS epidemic. If you have worked on HIV/AIDS issues for more than 15 years, if you started before 1986, please stand. Please help me and join me in recognizing these leaders, these pioneers, these elders.
On the other hand, if you have only done this work for the past two years – and the first time this conference was held was in August 1999, was two years ago – if you started doing this work since August 1999, please stand. And let’s give them a hand because they are our future leaders, who will carry this work on into the next 20 years and beyond.
Another thing that we used to do – and we are surrounded by panels from the AIDS quilt – is that we used to call out the names of those who had died from AIDS. We don’t do that very much anymore because, fortunately, we have treatments so that more people are living with HIV. But today, as I put up the names of those who lived and have died and are still living with HIV and AIDS, who have been my own personal inspiration and guides and mentors in doing this work, I ask you to silently remember those who inspire you to keep that work going.
I want to share with you four messages this afternoon. Be focused, be inclusive, be creative and be passionate about the work of HIV prevention.
In order to be focused, we have to ask ourselves the question, who is at greatest risk for HIV? Certainly we know and we will hear a lot through the next couple of days about the continuing disproportionate impact of HIV and AIDS in this country on African Americans and Latinos. As an Asian American, I need to stand up and tell you that we need to keep that focus. We need to keep that focus because we need to keep talking about the way that race intersects with HIV.
I can tell you about a consultation here at the Centers for Disease Control and Prevention (CDC) several years ago at which a representative of the CDC put up a slide from the early 1980s and said, see, we knew all along, from the very beginning of the epidemic, that there was a disproportionate impact of HIV and AIDS on the African American and Latino communities, so it’s nothing new, it’s something we’ve known all along. And my response then, which I am repeating now, was one of outrage. How dare the CDC tell us that they knew all along about this disproportionate impact, and did not respond, until the Congressional Black Caucus and the African American community and the Latino community responded?
And as an Asian American, how many times have I been in meetings at the CDC and elsewhere at the Department of Health and Human Services, representing my communities, the Asian American communities, and I look around the room and I see us talking about the impact of HIV and AIDS on communities of color and I see that the people engaging in the conversation are not African American. The ones that are African Americans in the room are the support staff – and they are primarily women – and they are the ones sitting silent, taking notes, helping with the logistics. And the conversation continues about HIV and AIDS in the African American community, with them invisible and silent.
And how can we have a consultation at the CDC on how to do better community level interventions when the first thing on the agenda is to say that we are not going to talk about racism or poverty in the meeting?
Who is at greatest risk? At the same time, as a gay man, I need to say that men who have sex with men and gay and bisexual men continue to be at greatest risk for HIV. Some of the new data about African American gay men and African American men who have sex with men is particularly alarming. So let’s talk about homophobia. At another meeting where we were being asked to make recommendations on HIV prevention research priorities, there was nothing in there, on a list that went on for 20 pages, about gay men. There was nothing on the list about sexual orientation, and the way that sexual identity impacts our sexual behaviors and our sexual decisionmaking and how that might impact HIV prevention. It took my voice in that room to say, what about that? And the response was oh, I guess we forgot, we’ll have to put it on the list.
And let’s also talk about injection drug users. We need to recognize and we will continue to recognize throughout this conference the importance of public health and the importance of science. So let’s talk about public health and science when it comes to injection drug users. The public health and the science tells us that needle exchange is an effective HIV prevention intervention. But the federal government, regardless of administration, regardless of political party, refuses to fund it. So when the government comes to us, in the community, and says, you need to apply public health and you need to use science, is it following its own advice?
Another way that we can be focused is to follow the money. The resources and the funding in this epidemic still do not follow the epidemic and they certainly do not get ahead of the epidemic. If you look at the CDC’s budget, the majority of the budget spent in Fiscal Year 1999 for HIV prevention, went through health departments. Where is the sense of accountability for that money, nearly 40% of the total? How do we know that we are serving those at greatest risk with these funds? We talk on the one hand about race and on the other about transmission categories but we never bring the two together. We never talk about whether we are serving gay men of color. We never talk about whether we are serving IDUs of color.
Other speakers have talked about the role of social, cultural and environmental factors. HIV prevention is very complex and unless we tackle these issues, we will not be able to make progress. Sometimes it’s up to us in the community, along with the CDC and health departments and researchers and scientists, to come up with the solutions. The pictures I am showing are pictures from some examples of activities in Asian American communities coming up with better interventions for our Asian American and Pacific Islander communities.
Second, I urge us to be inclusive. As we move into the third decade of this epidemic, as the focus finally shifts to minority communities and the Minority AIDS Initiative, there is a real danger of double standards for communities of color and minority community-based organizations. Minority community-based organizations are now being asked to comply with a centralized intake system for technical assistance requests that will go through health departments and the CDC, that is not being asked of other community- based organizations. We are being asked to do program evaluation in a way that has never been asked of health departments or of other community-based organizations. And finally, we are being asked to develop interventions for those who are HIV positive, which is very important, but on a timeline that is very fast.
For those of us in the community, we have been doing this work – we’ve been doing program development, evaluation, science, data collection. What we need is not only to follow the data that we have, but to try to get ahead of the data. Who are those populations and those communities that we haven’t paid attention to? Certainly Asian Americans and Native Hawaiians and Pacific Islanders, Native Americans, transgender individuals, women.
So let me talk about some of these populations. At a CDC planning meeting, CDC staff couldn’t come up with more than two names of Native Americans who might be speakers at a conference and I’m the one, as an Asian American, that had to suggest additional names.
Let’s talk about transgender individuals. There isn’t even a surveillance category right now that the CDC will recognize to collect HIV/AIDS surveillance data about transgender individuals. How can we talk about prevention for transgender individuals when we can’t even record the data?
Let’s talk about women. I am waiting for the day, as a man, when I will be invited to a consultation about HIV and women where the discussion will not focus on prenatal transmission. When can we talk about women as whole human beings and not just as women who might give birth? I urge all of you to look at the United Nations General Assembly Declaration on AIDS that was recently adopted in June and look specifically at the paragraphs about gender inequality. This was a charge that the international community, that every country in the United Nations, signed onto, including the United States, under this President. I ask you, how well are we doing on gender inequality in the United States?
We also need to be inclusive globally – to think, to look and to act beyond our borders because HIV/AIDS is indeed a world epidemic. There is much that we can learn from our counterparts, from nongovernmental organizations in other countries. More importantly, we can be humbled at the lack of proportionality in the allocation of resources. When our United States government only pledges $200 million to fight HIV/AIDS in the entire world, that’s pitiful.
Third, I urge you to be creative. On the one hand, trust and rely on your own community experience, expertise and wisdom but also learn and use the tools of public health, education, epidemiology, evaluation, and science. Constantly struggle with the balance between being in the community, being an activist, knowing your community, with being a professional and doing your job with those kinds of skills. As we recognize both our elders and our new leaders in our community, we need all of you, we need all of us together.
We also need to be creative individually and collectively as institutions and organizations, to fight complacency, to not just treat HIV prevention as a job. The fact that there are nearly 2,500 of you here at this conference means that you are probably working and being paid to work on this epidemic. But it’s not just a job, it’s not just an industry. It’s a fight to save people’s lives, to improve our health and to change our society. So what is new, what can we do, what can we push ourselves to do, that is new and different, that is not just meeting the grant objectives that we wrote, but that is actually making a difference, that is actually creating change in our communities?
Fourth and finally, I urge us all to be passionate. Other speakers already have used the word passion. When you look around at the AIDS quilt, we don’t have anymore at these conferences the sense of grief, the sense of anger, the sense of outrage that we had in the earlier decades of this epidemic. But I would urge, and suggest to you that today, more than ever, we need your activism, we need your advocacy, we need your solidarity. Because you have the knowledge and the experience and the expertise to go to our policymakers and our decisionmakers, to talk to them about what is happening in our communities and what is happening around the world, what your reality is like. It is your experience and wisdom and expertise as well as the learning that you will do here at this conference in the next couple of days that will help us reaffirm that HIV is, in fact, preventable.