What do you focus on in your own AIDS advocacy work?
The approach at Minority AIDS Project (MAP) is nonjudgmental. We focus on gaining the trust of the community, because that's very important. We get in touch with gatekeepers in the community who can take the message back, so that when we leave, they still spread the message of safer sex and self-love. We spend a lot of time on identifying community leaders.
Who are those leaders?
HIV advocacy leaders are usually from the target community. Many have some drug history, have been incarcerated or have been a commercial sex worker. These are persons who were at risk themselves and have the credibility to take the message back. There's nothing more empowering than to see an ex-sex worker go back to the community, and say, "Hey, y'know what you guys, what I was doing is unsafe, and look where that got me. I'm positive myself. Wear this condom. Wear this glove."
I'm an ex-gang member. I've been at Minority AIDS Project for 17 years, I went back to school, received my bachelor's and master's degrees, and now head this organization. Being an ex-gang member allows me to go back to the community and pass out red and blue condoms to Crips and Bloods in an effort to change behavior. Activism makes a major difference. This act of self achievement and procurement sends a strong message of empowerment to the gang population.
A significant number of our staff at MAP is HIV positive, and at one point used to be clients of the agency. People started living longer, doing better when the drug cocktails were introduced, but they needed to work. Does their experience as ex-clients help their work? Yes, it adds a positive spin because they're empowered -- they choose to disclose. That's just amazing. When you come into a session and sit down with a client, and they say, "I'm living with this virus, I'm on meds. You don't know what it's like out there trying to survive." The case manager, although sitting there in a shirt and tie says, "No, I've been positive for 17 years, I take my medications every day. I was incarcerated. I'm 13 years clean." You just can't pay for that.
What is the most critical AIDS issue facing the African- American community?
The number of new infections continues to be the most critical issue of HIV/AIDS in the African American community.
What do you think is the best way to address it?
We need to use more media outlets that African Americans actually utilize -- radio stations, television, music, fashion. We need the right people, such as hip-hop artists and black music moguls, to send the right messages.
Where is the most progress being made in combating the epidemic in the black community?
I'm starting to see some progress in faith-based institutions. Some churches are coming around, so the message is getting out.
Where is the least progress being made?
Funding sources are no longer allowing community-based organizations to test just anyone. We're moving away from routine testing and placing people again in so-called behavioral risk groups. There are people who could be infected -- and definitely are at risk -- but they may never get tested based on the screening process.
For example, a risk category called "Women at Sexual Risk" is African-American women defined as having had at least 15 sex partners in a 12-month period. Most women may not have had sex with 15 men in the last year, and if they have, they are more than likely not to admit it. So after screening, we're not able to test them.
The women may not consider themselves at risk, either. If we take a survey of the 60 or 70 African-American women registered at the agency and ask them, "In the year or two before you were diagnosed, how many sexual partners did you have?", many of them won't go past four or five. A lot of them will have one or two. When you screen them for unprotected sex, most of them consider themselves to be in a monogamous relationship.
What are the biggest obstacles you encounter?
It's funding. There have been a lot of budget cuts from all levels of government. Our own budgets were cut in half in the last year. I had to lay off 31 people over the last year and a half. Meanwhile, the rates of infection are increasing, the demand for services has increased. We're expected to do more with less money. That's a major challenge. Being able to keep the MAP staff is hard, because I can't give raises, can't always make payroll on time and we cannot provide the level of service that is demanded by the need.
The least support is at the federal level. However, they do give to local government, which then gives to us. It's not like they've taken it all away and said, "We're not going to give" -- they've just taken it and said, "We can no longer give directly to you."
From a programmatic standpoint, the challenge of the outreach workers is trying to adhere to the new contracts. It's getting extremely bureaucratic. Everything has to be based on some scientific model. It's challenging for the staff to do all of the things the contracts require and also deliver effective services.
Our HIV testing program is fee-for-service, which is based on behavioral risk groups (BRGs) and HIV positive test results. However, we work with a very challenging population that is not always willing to take an HIV test and we therefore have to offer them incentives, such as, t-shirts or movie/theater tickets to get them to test.
In my opinion, the government is responsible for providing adequate funding to provide for services that are difficult to charge a fee, or in instances where people cannot afford to pay and the private sector is not willing to support because they can't make money. Fee for service programs do not always work for government programs or community-based organizations. As a community, everyone should be encouraging routine HIV screening and testing instead of making HIV testing more difficult.
Where do you find the most support?
I have found some support working with other community-based organizations, because we're all going through the same struggles. Just a few months ago, AIDS Healthcare Foundation (AHF) donated $50,000 to MAP.
I have also received support from the private sector, Elizabeth Taylor and her foundation [Elizabet Taylor AIDS Foundation] has provided us with a $20,000 grant. Thelma Houston won $20,000 on a television show and donated it to MAP. Mary J. Blige provided us with $15,000, and Ice Cube gave us a $10,000 check two weeks ago. We get most of our unrestricted dollars from entertainment individuals who are willing to give you a check and say, "Do what you need to do to get the job done." That's a big help and keeps us afloat.
Our major funding sources are derived from local governing bodies such as the city and county of Los Angeles. They give us about 65 percent of our budget. They're there for us with government dollars, but their funding comes with many restrictions, and their funding does not cover 100% of the program operations or services. In order to provide the services required through local government contracts we must generate 15 to 30% of the cost of operating those programs. That is a real challenge.
What are the top myths about HIV you encounter in the African-American community?
Top myths include "It doesn't feel good with a condom on." "I'm too large for that." "Black men are so large, they can't fit the condom." "You don't look gay, you look clean." "You're not thin, therefore you must be OK." Another major myth -- not just in the African-American community, but in society in general -- is that people in church are not having sex, not fornicating. "That everyone is looking for their perfect mate to get married." "That all men are primarily straight" -- that's been proven otherwise.
Another myth is that we believe we can empower our African-American women to fight back and tell their men, "You're going to wear a condom." I think we're setting them up for failure. I can talk to them all day long about making their men wear the condom, and putting them out if they don't. But what if he's the sole provider. What happens when he says, "I'm outta here," and leaves, and the women want and or need their support?
What is the best way to counter these myths?
One of the best ways to counter these myths is to not allow people to endorse myths as realities. A lot of myths are really old and have not been proven otherwise. When HIV first hit the television screens, we saw a lot of Caucasian folks that were HIV positive, like Liberace. When the face of AIDS changed, we didn't see black faces to reflect that. So the assumption is still that it's a white, gay disease. African Americans just backed away. Often times people from the African American community say to us, Yes, we see Magic Johnson, but he has money -- of course he can get the best doctor. "And it's probably a hoax anyway." We hear it all the time: "Magic's not positive. He's just doing that to make money."
Another major challenge is having everyone on the same page. There are many people who believe there's a cure. That may come true, but people are holding on to that hope, and are not dealing with the true issues we have in the community around safer sex, self-love and low self-esteem.
In what ways is the HIV epidemic different in the black community than in other communities?
In the black community, often times HIV is closely associated with being gay. It is often difficult to get the community to focus on the challenges of HIV instead of a person's sexuality. However, in the white community there appears to be a lot more support, acceptance and understanding of being gay. The white community seems to be able to get together and fight for a cause in which they believe. The challenges for an HIV positive white client are quite different. Many are educated, and employed, leaving them just to deal with their HIV status. They think, "I'm HIV positive, now I have to change my diet, take care of myself, go shopping, and eat differently." There may be only a slight change in their life.
For an African American client at MAP, HIV is just one more problem added to the 15 already on their plate. They think, "I was already kicked out of my home, already on drugs. My mom doesn't love me, my dad hates that I'm gay, the church kicked me out." Therefore, they may resort to the mindset of "Put it on the back burner, I don't want to deal with it."
When you see a client who comes into MAP, his service plan is going to be quite different from an APLA [AIDS Project Los Angeles] client. A MAP client is going to need a more comprehensive and culturally competent case management system. Some clients can't read or write or don't have job skills. There are some significant and different challenges to African Americans.
Do you think activism is an effective way to fight the epidemic?
Absolutely, activism is very important. Year after year, there continues to be improvement. It's the squeaky-wheel syndrome. There're not enough resources to go around, and the more active and involved you are, the more likely you are to be funded. Even with the rates of infection so high in among African Americans now, a lot of resources are going for gay, white men. But activism and conversations with the right people make the monies go in different areas. In organizations like MAP, we don't have a lot of activism -- we don't have a marketing department, PR. That's my job, to do all 10 of those things, plus manage the programs. It's challenging.
Do you think too much has been made of the "down low"?
Way too much! It complicated things. I met J.L. King who went on Oprah and said he was on the down low. He did some work with us, right in the 'hood. The down low brought a lot of distraction to a very serious topic -- talking about who this individual is sleeping with, what he's doing in his bed. We got so unfocused in terms of the transmission of HIV. It doesn't matter whether you're gay or straight; it's about protecting yourself. We also put a lot of blame on individuals who may not be at fault for the spread of HIV.
What can be done to help African Americans get tested earlier and therefore get better treatment results?
We need celebrities -- Mary J. Blige, Ice Cube, Jamie Foxx, Oprah, whoever's hot -- to say, "Hey, I'm getting tested now. Everyone get tested!" They can do that on June 27th, National HIV Testing Day, and as often before and after that date as they can. People listen to celebrities.
In addition, there's going to have to be some type of incentive or stipend to test people. We have to understand that many people in urban areas such as South Los Angeles, are not motivated. It may be more cost-effective to give people a T-shirt or a ticket to a movie theater [to get them to go for HIV testing] than to find out that a person is diagnosed with HIV and get them into care at $20,000 a year, or in a hospice which costs even more.
As for getting better results from treatment, individuals need to be more vocal. That's a cultural thing. African Americans, whether educated or not, tend not to question the doctors, and take everything they say or do as gospel. It's disempowering. Being more involved, getting more educated, and becoming involved with community-based organizations that encourage empowerment, will help with receiving better results from treatment. The individual needs to be told, "This is the type of thing you need to look for," because they don't know what types of questions to ask -- they're not familiar with their bodies and HIV.
What are your hopes and fears for the next generation of African Americans as they face the risks of HIV?
My hope is a cure for HIV and AIDS, an eradication of AIDS and a vaccine. I want to work in this fight until I no longer have a job due to the eradication of HIV/AIDS.
My fear is that we're wiped out as a community, which is possible with the small population we have. A third will be in jail, a third will be dead, and the other third will need a job. There will not be much left after that.
Can you recommend one action everyone can take to end the epidemic?
A combination action: get educated, get involved. Celibacy's not going to work, so let's have condoms. Have people make a commitment to wear a condom for the rest of their lives and encourage their family, friends and love ones to do the same.