African American Legends; Debra Fraser-Howze, CEO, National Black Leadership Commision on AIDS

The African-American legend series highlights the accomplishments of blacks and areas as various politics, sports, aviation, business, healthcare, literature, and religion. We'll explore how African-Americans have succeeded in areas where they've been previously excluded, because of segregation, racism, and lack of opportunity. I'm your host, Dr. Roscoe C. Brown Jr., and with us today is Deborah Frazier House, CEO of the National Black Leadership Commission on Age, which was founded 20 years ago. 20 years ago, November 7, 1987. And November 7, 2007, you're having a celebration at Chelsea Piers. It's our 20th anniversary gala. We're very happy about it. We're honoring Rory Kennedy, we're honoring Gilead scientists, or, for sure, the makers of the first AIDS test, the oral AIDS test.

We have Bill Duke and Susan Taylor from Essence Magazine, and Hidea Broadbank, a young girl who had HIV and AIDS when she was born, and is a real champion in AIDS advocacy. She's now 22 years old and attending Howard University, very good student, and we're bringing here, and she spends her life talking to young people about AIDS. Well, Black her, as we call a Black Leadership Commission on Age, helped to change the face of AIDS, not only in the Black community, but nationally. So take us back 20 years ago when you started. How did you start? What was the motivation? What was the situation regarding AIDS at that time? Well, we had a situation where we knew that people were HIV positive, Black people were HIV positive. If you remember in 1989, even after we started, it wasn't until then that then see every coop, the Surgeon General of the United States at the time, sent us a message through the covers of Ebony Magazine, saying that HIV and AIDS is coming into the Black community

like a locomotive out of control. Well, thank God we were already up in an operation that was around our needle exchange debate. You remember that debate? We had a big debate around needle exchange. Well, for the public's interest, describe what you mean by needle exchange and why was proposed and what happened with it. Well, needle exchange is a program that we now found. This is an effective program where they actually give you drug addicts a needle, a clean needle in exchange for a dirty one, because you transmit the virus through the exchange of the sharing of dirty needles. This program became very controversial under the catch administration. They came into our communities and unveiled this program and said, we're going to give clean needles to drug addicts and the Black leadership in this city said, well, if you can show me the scientific fact that this does help in this spread of AIDS, that's one

thing. But you're giving people clean needles and we also see the needle as empty. And we have an outrageous drug problem in our communities. This was in the late 80s. How are you responding to that? We had a series of meetings, David Dinkets was mayor at the time and he was absolutely against this program as most Black leaders were because the whole notion of giving people who were in trouble with drugs, facilitating them to continue to use drugs just made no common sense to people in the community and the community was outraged at the thought. You were able, however, to look at the science and then to negotiate a situation where we would allow pilot programs of needle exchange, but they would also have to offer drug treatment on demand. And that's how we got to do it.

Speaking of drug treatment and transmission by needles and so on, when the epidemic first started, it was considered to be a gay white man's disease with a chance. The gay related immune deficiency disease. And then the gay community was able to get a hold of it in terms of safe sex practices, but the virus was then free and began to be spread by intravenous drug use. So that is the reason why needle exchange became so important. Exactly. But then the other part of it has to do with safe sex and safe practices. So tell us about how Blacka emerged as the leader in terms of anti-age prevention or taking care of people who have AIDS after they've gotten it. Well, one of the things that we discovered very early on, when you bring all the leadership together and we have clergy, elected official social policy experts, business, medical leaders, and we brought all the least leaders together.

Who do we? The National Black Leadership Division. Under the leadership of Deborah Fraser Howard. Thank you. And we first started out looking at the state of New York, and we went into Hempstead and Rochester and Syracuse and Buffalo, and we involved in the Bronx and everywhere. And we, you know, from the first meeting that we had in 1987 where we brought this gathering of leaders together in the city, and then had them start looking at policies and programs. One of the first things we realized is that the organizations that were on the ground struggling to keep their doors open couldn't pay the rent and take care of people with AIDS in the same way. There was one other thing that was major about this. When the disease first presented itself in the gay community, the Centers for Disease Control and all those people that go around and, you know, collect information on disease epidemiologists were very focused on the white gay community. They weren't focused on the black community. Now we know that the black community was infected at the same time that the white gay community was infected, but we didn't have the information.

We didn't know exactly what was going on in our community. The information that came from Sea Ever Coupe came very late. And then when it did come, people were told that, you know, a green monkey started it from Africa, so the Africans are responsible for it. The Haitians are responsible for it because when you're Haitian, you're more prone to have AIDS, which is none of which is true. So you have a situation now where black people are hearing some information that is incorrect, that they don't accept, and then you have a disease that's spreading and the only way to stop the disease from spreading is with prevention education. So you've got a group of people now that are not taking the messages to heed because they distrust this public health system. So you've got, and you've got massive infection within the black community that nobody's counting. You've got a hotbed of a disaster, and that's exactly what we have today. One in every 50 black men, and one in every 160 black females in America, is estimated

to be HIV positive? But the face of the disease has changed somewhat, particularly with the identification of magic. Johnson is being HIV positive because again, for the listeners, HIV positive doesn't mean that you have full-blown AIDS. Absolutely. Could you explain a little about that? Well, HIV positive is the infection. It's what they can detect in your bloodstream to say that you are absolutely infected. You can't get rid of HIV. It is virus. And then the virus mutates into full-blown AIDS. When you get full-blown AIDS, you are already beginning to see symptoms. That can take up to 10 years. You are already, in some cases, more than 10 years. But you are already beginning to see symptoms. And the symptoms are very specific. They call them opportunistic infections. You may get a pneumonia, that only 70-year-old men from Russia get pneumocystis. People are looking at these different illnesses and says something is wrong.

Your immune system is compromised, and you're getting these illnesses. When that happens, they diagnose you as having full-blown AIDS. And in life, it's very short, that's correct. Life expectancy can be short with new medications. Tell us about the drugs and how that developed. Yes, they came up with the protease inhibitors around the time that Magic Johnson announced that he was HIV positive, which again was November 7th of 1990. And they came up with Dr. David Ho, particularly champion this, right here in New York City. It's something called protease inhibitors, what they call the cocktails. Which means that they look at everybody differently and take a combination of anti-age drugs, things that retard the mutation of the virus, so that you stay healthy and longer. You no longer see people walking around with the wasting syndrome. Those people who used to look dreaded. They would lose massive amounts of weight, and all the hair would fall out, teeth would fall out, it would be, it was a horrible way to die.

People are now living longer, their viral load is down, and they actually are healthy. Their healthy living does not mean that their immune system is not compromised. You can look healthy, but you can catch a very bad virus on top of having HIV infection or having full-blown AIDS, and you can be gone in a second. So these people still have to be very careful. They have to be careful of people like you and me, all kind of germs that are around them. They have to be much more careful of us. We don't have to be careful of them. You can't transmit AIDS to do another good one. That's another good one. Exactly. When Epidemic first started, many times in cafeterias, people who want to shun folks they knew of HIV, and of course we had to do a lot of education to get them to realize that it's not transmitted that way. Exactly. The real skill was real. The science does not support that people contract AIDS through casual contact.

There is a sexual transmission. There is the sharing of needles, so there's the passing of fluids, bodily fluid, a transmission. And of course in utero when a mother is having a child, the virus can be passed on that way. The National Black Leadership Commission on AIDS as well championed a situation back in the 90s where we argued, because the science supported it, that we could find a way to break the transmission between mother and child in utero. And now there was a major study that they called 0766, a mysterious study that came out. And we looked at that study very carefully with the doctors we have on our board, Larry Brown and Benny Primm and all of these doctors, Carolyn Britton at the time. And we said, you know, we, Janet Mitchell, we need to really look at this study and see if we should support this study. And we determined that we should, we were among the pariah of the AIDS community, because

the AIDS community thought that we should not support this. They weren't, they weren't, a lot of the AIDS community was not as concerned about women and children as we were from the black community. And we found a way to support this, it was implemented, and now we have a reduction in the transmission between mother and child at almost 90%. Now, this shows the role of black, black leadership commission on AIDS. The black does not provide treatment, but black provides education, they provide community organization, they provide support for organizations that do treatment. So tell us how this emerged, how this evolved. Well, one of the things, again, is we found out that the community-based organizations that were on the ground were having a very difficult time. So we started giving technical assistance, teaching community-based organizations how to write proposals in AIDS, how to do public policy in AIDS, how to really examine policies that

needed to be examined, how to look at organizational development and management capacity building. We helped them to build their capacity. We also understood that they were, while they were a lot of white gay AIDS organizations that were very successful, when we looked at the numbers in our community, there were a number of people in our community who had AIDS that didn't go to the white gay organizations. So we had to build the capacity of the organizations that had been there 20, 30, 40 years in our community who didn't do anything about AIDS, but actually people with AIDS, people with HIV and families, they were seeing on a daily basis. So we had to help them build their capacity. To date, Roscoe, we have raised over 2.9 billion dollars in new monies for communities of color in the 20 years of our existence. We've done through, through, through writing and supporting and a collaboration with the Congressional Black Caucus, the Minority HIV AIDS Initiative Bill.

We've done so with Alvin and New York State Legislature and the New York City Council and getting millions of new dollars out to black churches, community-based organizations, so they could stay alive. They can keep their doors open and actually perform the service that they were put there to perform. Now, the mileage you described for blacker is an ideal model for community organization in any area, whether it be other forms of health or education or economic development, as a leader in that, you have been the leader, you are the CEO, you are the point person. Tell us how you went about doing that. What are some of the skills and the techniques that you used to mobilize a community and provide leadership for an organization like blacker? Well, one of the first things that we did was organize the leadership that already exists. You know, you have to walk into these situations looking at what is your best and your brightest.

You have to understand that we are not a bankrupt community. We do have leaders. They're good leaders. They're strong leaders. They're busy leaders, but they're good and strong and smart. So we had to call together those leadership, those, the traditional leaders of our community, very much going back to the notion of the Council of Elders in Africa, where the leaders, the senior leaders of the community would come together to solve a problem of the village. That was the concept of blacker, bringing the leadership together. And what we saw was a cross-fertilization of the elected officials, the policy makers, the researchers like yourself, talking to the actual doctors that were on the ground, the clergy paid in major part. They were the cornerstone of blacker in its beginning and to this day. We have just had probably the biggest program that we've ever had and bringing together Reverend Butts is the Chairman of the Board of the National Black Leadership Commission on AIDS.

And every one of our affiliates, we have in our emerging, we now have 12 affiliates across the country, all led by a leading black clergy in their cities, Baltimore, Detroit, Atlanta, all across the state of New York, superb black leadership. And they've brought together the elected officials, the medical leaders, the business leaders, the media leaders. And they all work with the black clergy in order to advance programs, resources and everything else that their local community needs. And blacker, as the national office, supplies resources and helps with the community development all over the country, we've become a massive force to deal with, especially around public policy. But when you talk about mobilizing the community, you get the churches, you get the leaders, you get the politicians. But eventually somebody has to write the proposals, somebody has to come up with a policy program, somebody has to advocate with the legislators, with the Congress, with the pharmaceutical companies.

And how do you do that? Well, it's not easy. You know, I remember when we first started blacker with the help of Reverend Calvin Presley, who's just recently passed on. And him taking me onto his wing and saying, all right, now, I'm going to give you some space in my office. We had a $5,000 grant in a part-time secretary. When we raised our first million dollars, he kicked us out, tell us, you know, I'm going to give you a whole suite of offices and you have to, now you can take care of yourself. It was a learning process, but I came out of the urban league, you know, and blacker was born at the urban league. So we came, I came out of a tradition of, in teenage pregnancy, of writing grants and developing those kinds of relationships to get policies moving forward. And that's one of the skills, as you have to write, you have to be able to communicate effectively with other people. And you have to understand that it's not about you, that in order to bring the leadership together and keep them together, it's got to be about what they can do for the community.

And that's what you become, you become a facilitator, a facilitator of what the best and the brightest can give back to the community. And that's all you are. Well, in the struggle for first class citizenship, equality, et cetera, there's always been a push pull between the policy organizations like the urban league and the NAACP legal, and the people in the street, like corn or snake and so on. How do you bring those together? How do you balance out being in the street, raising the question, and at the same time I have to go in the suites and work on grants and policy. How do you balance that out? It takes a lot of trust. The people in the community have to trust the organization. Well, how do they learn that trust? One of the things that we did in regard to the addresses bringing together their traditional leaders, they respected these leaders. These leaders were respected long before black acayment to being. So when they saw an organization where all of them sat in one place, they said, all right,

this may be an organization for us to watch. And then you have to be consistent. In my appointment at the White House with President Clinton, and then I was maintained for an appointment with President Bush for the first year of his President's Advisory Council, we never wavered. We were not confused when we sat in those suites that we were there. We had a responsibility and our responsibility was to the black community. We did not apologize for that. And we made sure that the black community received what it needed to. You can't sit in a position and be of African descent and come there and get confused about why you're sitting there in the first place or who put you there in the first place. The community put you there and their expectations are high and your standard should be high and what you give back to the community should be of absolutely the best quality. And you know, we also, you know, the uniqueness that for 20 years, we were the first organization to actually bring the black clergy to the table.

And we brought them to the table. That's not necessarily the end of L.O.C.P.s at black clergy to be here. Well, no, no, I'm not talking about, you know, that's when I'm our oldest civil rights organization. I'm talking about in HIV and AIDS for the black community. We brought them to the table, but not in it, and not in a programmatic aspect, but in a policymaking aspect, you know, when I look back at Martin Luther King and I see all of the inspirational things that he did and set to us and he was standing on this rock saying, you know, I have a dream. But at the same time, he was saying I have a dream. He was working with President Johnson to advance legislation that would change our social condition. So what we've done recently is had Reverend Butts and Bishop TD Jakes come together, bring together the clergy, some of the biggest names in the black clergy, the mega churches, the traditional churches, Eddie Long and Creflo Dalla and Fred Price. They all converged on New York City a couple of weeks ago to sit there and write a policy action plan.

And they developed something called the National HIV AIDS Elimination Act and Congressman Rangel, Meeks, Towns, all came into work with us. And we are going to push this forward and absolutely change the social condition of black people in America with this epidemic. One thing about black people, despite all the struggles they have, they're very optimistic. Now, when asked you, how could we have translated that organizational political strategy to Katrina? Black folks in Katrina have been treated miserably. It's a long history in New Orleans. Despite all the climate and the jazz, New Orleans has always been very biased against black people. Not that you could solve the Katrina problem, but if you had some input into organizing around Katrina, what would be some of the things that you would do? Well, one of the things that we certainly regret, because New Orleans was one of the cities where we were supposed to go in and start in a affiliate and just before that Katrina hit, we regret not having, having organized all of those leaders from those different factions

together. Because we do believe that there wouldn't have been a bunch of buses sitting there and people not using those buses. If we had organized New Orleans the way that we wanted to organize New Orleans, we have subsequently adopted an agency led by a preacher in New Orleans and New Orleans has asked us to come in now. I think that what New Orleans needed was some clear direction, was some groups of people talking to each other before the levees broke, to say, you know, we need to get our people out of here. Because people always told, you know, you have to remember, New Orleans had a black mayor who now has the National Urban League. They had a black mayor at the time, they had supposedly political power. What went wrong? Not that you or I could determine exactly what they're on, but what do you think some of the elements of that work? The conversation can be just at the absolute top. The conversation has to be in the street, the county, you have to find a way to communicate

to the community what needs to happen. You know, a prime example of that is when we got the leaders together. And I said, we need to send an AIDS message out from us because our people are not listening to the Department of Health. Where do we send that AIDS message out? And we decided we're going to send it out through the black churches. Every Sunday, you've got millions of people that are going to church. We're going to send it out. Our van has this bulletin, as we'll do all the elected officials, but they send information out to the community. Let's send it out to those militants. Let's go into the doctor's office and let them talk to the patients directly when they come in about testing. We had to find how to communicate what needed to be done to our people so that it would get on the ground and so that the information from the ground would come up to the top. And that's what New Orleans was missing. That's a basic lesson in community organization development and it does require a leader to do that.

Now, as the leader of blacks, what are your plans for 2008? You're always going to look right here. We are looking very closely at this National Elimination Act. We've already got the elements of that act. Well, they're looking at building the capacity of community-based organizations, looking at universal testing, trying to give them a technical testing, universal testing and routineizing testing, where we want to get mass messages out to everybody about the importance of being tested. Does everybody be tested for age? Everybody should be tested for age. Because everybody's at risk. If you are sexually active, you are at risk. The reason why I think that we have such an explosion of infection in the black community and I'm looking at now women under 50, over 50, black women, over 50, like myself. Their numbers are rising. And the numbers are rising because they walk around not thinking that they are at risk. They don't have the understanding, oh, they're not negative about it. It's not like it's those people and those people that we don't associate with.

You know, I'm very often a single parent, my children are grown and gone. I'm a grandparent in some cases. I don't have a man in the house, so I'm not having sex on a regular basis. And I don't just see the risk and why should I take this test? But there can be one time. It only takes one time. That there is a sexual activity. They're still human. They still have human desires. And they can put themselves at such tremendous risk. And then there's also this situation that not everybody is honest about this sexual past, their drug history, men who have sex with men, these kinds of situations are going on in the community that is already concentrated with infection. So the ability to get infection with one sexual act is very strong. So you have to protect yourself. Now getting information out to the community about that, I remember when they first discovered that breast milk transmitted infection.

The appropriate house, you have educated us tremendously of how to aid the National Black Leadership Commission on AIDS. And you also have given us a model for community organizations. Thanks to the appropriate house for being with us on today's African American League. Thank you so much. I'd love to come back. Thank you.