Developing an AIDS Action Plan Several key African-American organizations gathered recently to draft a new plan in the fight against AIDS. Participants Jesse Milan (chairman of the board for the Black AIDS Institute) and Pernessa Seele (founder and CEO of The Balm in Gilead) talk with Tony Cox about the meeting.

Developing an AIDS Action Plan

Developing an AIDS Action Plan

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Several key African-American organizations gathered recently to draft a new plan in the fight against AIDS. Participants Jesse Milan (chairman of the board for the Black AIDS Institute) and Pernessa Seele (founder and CEO of The Balm in Gilead) talk with Tony Cox about the meeting.


From NPR News, this is NEWS & NOTES. I'm Farai Chideya.

Key organizations gathered recently to figure out new ways to fight AIDS in black communities. According to a new report from the Centers for Disease Control, black women are 20 times more likely to test positive for HIV than their white counterparts. And black men are seven times more likely. The group's drafted a national action plan to take their fight against AIDS to the next level.

NPR's Tony Cox spoke with two activists who attended the forum where the plan was drafted. Jesse Milan, chairman of the board for the Black AIDS Institute, and Pernessa Seele, founder and CEO of The Balm in Gilead.

TONY COX: Jesse and Pernessa, you are both veteran AIDS advocates. And today, African-Americans account for half of all Americans infected currently, and the newly infected as well. As a community, the black community, Jesse, what are we doing wrong or just not doing?

Mr. JESSE MILAN (Chairman, Black AIDS Institute): Well, one thing we are not doing is talking about HIV/AIDS. I think we've managed to push AIDS so far underground that we're surprised when we hear statistics like those that you just quoted. So it's time for us to put AIDS back in our conversation, because it's our people who are mostly impacted by AIDS and our people were the ones who are still dying.

COX: Well, Pernessa, this national action plan from your recent summit sounds very ambitious. What did you come up with?

Ms. PERNESSA SEELE (Founder and CEO, The Balm of Gilead): We have to mobilize our historical organizations, civic leagues, churches, legal departments -everybody has to be mobilized, and mobilize in synch with each other. It's not that we are beginning anything, because we've been doing churches and civic organizations for a long time. But now we need a serious focus in organizing the entire community to get the word out to start talking about HIV and AIDS, like Jesse is saying.

COX: Now Jesse mentioned talking. How - that's not the problem itself, is it? That we're just not talking about it? Isn't more required?

Mr. MILAN: Well, I think by not talking we're reinforcing that HIV has a tremendous stigma in our community. And yet we know that there are people who are infected with HIV. We have had so many people who have lost relatives to HIV, who still don't let people know that. So we've got to break down the stigma, and that's one of the aspects of our mobilization, is to reduce the stigma around HIV/AIDS, as well as encouraging people to know their status and getting more people into treatment and care.

COX: Well, Pernessa, to do that, how do you involve the faith community in your action plan?

Ms. SEELE: Well, the faith community is central to - in the African-American community, because we have to captivated audience every Sunday. And we must make HIV/AIDS information education available on Sunday mornings so that that word goes forth in the community, because I agree. Talking is so important.

You know, we have to make this a bedroom conversation. We have to make it a breakfast, a lunch, a dinner conversation on our jobs. So the role of the church is very important in making that call to action every Sunday.

COX: Well, I don't have to tell either of you how difficult that is, that it's easier said than done. In fact, Pernessa, I'd like to play a clip for you of a young man that we spoke to last year. His name is Jonathan Perry. He is gay, and he is HIV-positive. Now this was John talking about a meeting with his pastor, who disapproved of his lifestyle.

Mr. JONATHAN PERRY (HIV-Positive): He says, Jonathan, as of 9:45 this night, I turn you over to Satan so that you might be saved. You're no longer welcomed at First Assembly. At that moment, that was when enmity set in between me and my God.

COX: Now, Pernessa, from a faith-based perspective and as an AIDS advocate, how do you deal with such religious and theological prejudice?

Ms. SEELE: Well, you know, unfortunately, that pastor is out there doing a lot of harm than good in our community. And, but we cannot throw that pastor away. We must continue to educate them. And we must also continue to make them understand that HIV/AIDS is not a homosexual disease. Their theological position on homosexuality has nothing to do with their responsibility in addressing this public health crisis.

It's unfortunate that a pastor feels that way about anybody living on this planet. But they do happen, and The Balm in Gilead, our role is to continue to educate that pastor so that he will turn his message around and support people living with HIV/AIDS in our community, because that kind of behavior is intolerable from the pastor.

COX: But it brings me back to my original question for you, Pernessa, which is how you do that. These pastors - and there are many - are steeped in these beliefs. How do you get them to not see it that way?

Ms. SEELE: Well, for 18 years we have been - we have our - all of our programs are centered around different theological conversations, how to develop a sermon with HIV/AIDS. Our flagship program is a week of prayer for the healing of AIDS.

We have conferences where we bring pastors and folks together to educate and teach them. It's really about education. And the problem is, it's that we want immediate action. And this kind of theological conversation, it's a process that takes too long.

Well, we have to stay in the vineyard, and most - also most importantly is that we have more and more pastors and churches who are having the right conversation. And we have to begin to list up those positive role models so that other churches will have - those churches and pastors will follow, and not these crazy pastors.

COX: Well, Jesse, while AIDS is not a gay disease, it is still a huge problem among gay and black populations. Why, in your view, is it spreading so far, so fast?

Mr. MILAN: Well, if you look worldwide, HIV/AIDS is actually not only a black disease, but very much a heterosexual disease worldwide. But, I think in our community, we failed to educate ourselves not only about human sexuality, but about how HIV is or is not transmitted.

We have too many people who simply never had basic HIV/AIDS prevention or education about HIV when they were in school because so many people were already out of school when the HIV crisis began to rage and were already sexually active.

So we have a lot of people out there who have many misconceptions about how HIV is or is not transmitted. And we've never empowered our people about how to have the conversations with your - with the person with whom you are sexually active about what is an appropriate behavior between the two of you.

COX: Well, Jesse, also, two-thirds of blacks, who are getting treatment for HIV/AIDS pay for it, apparently, with public health insurance. Are access to care and affordability still issues?

Mr. MILAN: Oh, absolutely. I mean, every time we have a conversation about funding for Medicaid, we're having a conversation about taking care of people with HIV/AIDS. Every time we talk about prison health, we're talking about HIV-AIDS. Every time we talked about the millions and millions of people in this country who are uninsured, we're talking about HIV/AIDS.

COX: Now, Pernessa, Jesse talked about the fact that AIDS is international, and it's spread beyond the black community. And it's not just limited to gays, but it involves heterosexuals as well. One of the statistics that caught my eye is this: in 2004, eight of the 10 blackest AIDS epidemics were in the South, in the south part of the United States. Is there any idea that you could offer us in terms to why this disease has been so successful there?

Ms. SEELE: You can compare some African-American communities to Africa. You know, the issues of poverty are the same. The issue of access to care is the same. You don't have in Mobile, Alabama and down Mississippi and Louisiana -you don't have available access to treatment as you may have in New York and Chicago and urban centers.

You also - the information is not there. I think we have a tendency to think that because we have been fighting HIV/AIDS for 25 years, like Jesse just said, that everybody knows about it. The information really does not come through Lincolnville, South Carolina, which is a little, you know, sleepy town, 24 miles out of Charleston, South Carolina, as it comes through Arlington, Virginia.

And we have to look at that. And an epidemic is raging, so we have communities, you know, down South where one in every four people is living in a town that's HIV - which is the same comparable or even higher rate of HIV/AIDS in Africa. So you have the same issues.

COX: You make an interesting point. Jesse, it's always hard to measure progress. And when you talk about AIDS and HIV, when you hear about it, it is always the dismal prognosis - the story of the numbers rising, the people dying, the people becoming infected. You don't hear very much about progress being made. What sort of benchmarks are you realistically hoping for, and by when should we expect to see any of them met?

Mr. MILAN: Well, our mobilization efforts really are also focused on getting more people into treatment and care and getting more people to know their HIV status. So we know that infection rates will go down as more people know their status, because if you're negative, your goal is to stay negative. If you're positive, your goal should be to not transmit this disease to anyone else.

And right now, we know that it's - approximately 50 percent of the people in this country who have HIV are not in treatment and care. So there's a new benchmark that we can easily aim for right now, to reduce that percentage. And that - and by reducing that percentage, we will assure that we're getting more black people into treatment and care.

COX: Pernessa, I'm going to bring the conversation to a close with you on this point. Let's talk about hope for a moment. And when I think of HIV, and perhaps a positive face with regard to it, I think of someone like Earvin Magic Johnson, the Lakers basketball player who is still thriving many years after his diagnosis of HIV. Talk about hope and talk about what we are doing right in the fight against AIDS and HIV.

Ms. SEELE: Well, you know, as our good leader says - one of our good leaders, Jesse, says - keep hope alive. And I think that, you know, just having this show is a testament of hope in how far we've come, that this conversation is about HIV/AIDS in the black community. That the mobilization campaign, that the facts that, you know, we may - it may have taken us a while but, you know, it is happening now that the organizations - black organizations, institutions are coming onboard.

People are getting the information. Our NAACP urban league and African-American historical churches, they do have a national health office that is addressing HIV and AIDS. People are getting into treatment and care. Magic Johnson is going around the country saying, hey, look at me. It's not just because of my money, but it's because I'm clear about taking care of myself. And we see more of coming together, a synergy, around addressing HIV/AIDS in the African-American community like we've never seen before. And that is keeping hope alive.

COX: Jesse Milan is chairman of the board for the Black AIDS Institute. Pernessa Seele is founder and CEO of The Balm in Gilead. Thank you both very much for an enlightening conversation.

Mr. MILAN: Thank you.

Ms. SEELE: Thank you.

CHIDEYA: Again, that was NPR's Tony Cox. And as Jesse Milan said, AIDS is not a gay disease, but it is ravaging black gay communities. So should the church take a leading role in promoting AIDS awareness, including reaching out to gays and lesbians?

Later in the show, we'll hear from Bishop Harry Jackson, who believes homosexuality has no place in the pulpit.

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