September 16, 2010
by Willette Francis
As the executive director of the New Jersey Women and AIDS Network (NJWAN) Monique Howard tackles a most daunting task: driving down the rates of HIV among Garden State women.
Why did you become an advocate for women living with HIV?
I happened to read a newspaper article in the Village Voice about Loretta Sweet Jemmott, MD, a researcher from Rutgers [State University of New Jersey] School of Nursing. She’d received a large grant from the National Institute of Mental Health (NIMH) to launch an HIV prevention research study [the Black Women’s Health Project] at Newark Beth Israel Medical Center in the Women’s Outpatient Clinic.
First, I worked with Dr. Jemmott as a volunteer to gain experience. Then I worked with her as a student to receive internship credit for my master’s program. At the time there was a newspaper article saying that Newark was the epicenter of the virus, and particularly affected women. I was also in Newark, and women were our target population.
I eventually became the program coordinator for the Black Women’s Health Project under Dr. Jemmott’s directorship. I’ve been working with women ever since and have never gone back.
What was the experience like when you first switched careers and started doing HIV prevention work?
It was a phenomenal experience. We trained black nurses to facilitate HIV interventions [ways to reduce HIV-risk-related behaviors] created by Dr. Jemmott and her research team and used them on the weekends, which were our intervention days. I think there were about 630 women in the HIV prevention research, a five-year study. We followed participants for three, six, nine and 12 months during the study.
The interventions included individuals working one-to-one with a nurse facilitator. One intervention involved working one-to-one with a nurse for 20 minutes to learn skills. Another involved working in groups of four to seven women with a facilitator for three hours. There was also a knowledge intervention where you worked for 20 minutes with a facilitator to become educated [about HIV], and a three-hour version; they all worked.
Those became evidence-based interventions for the Centers for Disease Control and Prevention. These interventions helped decrease women having unprotected sex, their number of partners and increased their condom use with those partners.
The experience showed me the power women have and how as a group we need specific attention when it comes to HIV. It also showed me that HIV reduction strategies have to be targeted. Interventions currently being used and some of the grassroots initiatives are good because they are able to specifically target a population they service.
How did you get involved with advocacy work specifically with New Jersey women?
I learned that NJWAN existed and was available for women and they worked with HIV. I got there in a roundabout way. During the years between 1993 (when I originally applied for a position at NJWAN as the assistant coordinator) and 2003 (when I actually started working at NJWAN as executive director) I acquired or honed a number of skills that prepared me to lead the only female-specific AIDS service organization in New Jersey.
Those skills were leadership, management, grants writing and management, public policy/advocacy and community mobilization. Having them enabled me to be a credible voice for women living with or affected by HIV/AIDS, evaluate the intersection of social and reproductive justice and HIV, and to create and sustain programming that focuses on wellness, self-determination and improving the quality of life.
I recognized that women who are infected or affected by HIV needed help finding a voice. This is because the stigma and the shame associated with HIV are more prevalent than for any other disease.
Living with HIV removes your voice. It almost takes your breath away and prevents you from speaking, and you need someone to help you find your voice or step in and be your voice. That’s what I wanted to do. Then I went to the University of Pennsylvania and worked in the School of Nursing in the Center for Urban Research. I was also a doctoral student at the university’s Graduate School of Education. I earned my doctorate in education with a concentration in human sexuality.
While at the university, I created interventions that were risk reductive for pregnancy, HIV and other STIs primarily affecting women. I also did some work with adolescents, but really missed working with women.
What are the major challenges in creating awareness of the epidemic in New Jersey?
First and foremost are the economic challenges—not having the financial resources needed to provide information in the way it should be delivered. But one of the big challenges is the lack of recognition of our personal vulnerability. We just don’t think that we are at risk for contracting HIV; it’s not even on our radar. When I ask women if they think about HIV, some answer that they don’t have time for it. There are so many things that women focus on in their lives; HIV is not one of them.
Sometimes people are stuck in the early ’80s when there were so many [unanswered] questions [about HIV]. What happened with all of that questioning is that we ruled ourselves out of being at risk. We didn’t realize our behaviors placed us at risk, and we began saying that we’d look at the answers when they figured it out. Then we never looked back.
I recently facilitated a workshop for a group of women, ages 40 to 60. Our elders are one of the growing groups of people living with HIV, particularly women. The group wanted to talk about teens and HIV. I told them that wasn’t what I was there to talk about. I asked how many of them had children. Then I said, “What did you do to have children? You did one of the sexual behaviors that are on this list, am I right? You employed one of these modes of transmission for HIV.” They were not really happy with me. But I had to tell these women that they had participated in behavior that put them at risk of HIV however many years ago they’d done it. “And I’m sure you’re still doing it,” I said.
Then I told them, “OK, let’s talk about teens and their behaviors. But if that’s the only thing that you are going to hear, then you’re missing the boat. I’m not going to miss an opportunity to educate you where you are right now.”
Then I tried to give them some scenarios about women who are widowed and were married for 50 years and who cannot accept that they are at risk for HIV. And I said all that in English and watched the look on their faces. That’s why I say one of the largest challenges is people understanding how personally vulnerable they are. Folks associate HIV with those people and think they don’t have to worry about getting it.
Why do you think HIV rates have increased among women nationally and globally?
Our relationships and gender inequalities make it challenging for us to negotiate our sexual decisions with our partners. In some cultures and countries, that is not even something women can do. For women, gender-based violence makes it difficult to negotiate sexual decisions; poverty and homelessness force women to barter sex for what they need so they can provide for their children and families that may place them at risk. Often they stay in bad relationships even though they know it’s not safe. The sex is not really that important because it’s about what it gets for them.
What are the goals of your organization’s “I Stand With NJWAN” campaign, and how do you plan to accomplish them?
We are very excited about the NJWAN campaign. A couple of years ago I was teaching a class as a guest lecturer for an undergraduate course. I told the students that New Jersey has the highest rate of women with AIDS in the nation. The majority of the students in the class were females, and that was brand new information to them. I said to myself, This should not be news. But the only time these students probably heard about HIV/AIDS is around December 1 [which marks World AIDS Day] and national AIDS testing days. But even then you only hear about the specific communities these initiatives are directed toward. I think people are missing a lot of information.
Because HIV is not a conversation that people choose to have at the dining room table, what I want to do as an agency is raise awareness of HIV. I know that awareness is not necessarily going to make people change their behavior, but awareness will lead to education, and education leads to skills building and hopefully behavior changes. I thought that we needed to start someplace. One goal was to open doors to education and skills building. How we plan to accomplish those goals are by having roundtable discussions at some organizations throughout the state’s 21 counties. We are considering having a table at all the health fairs and discussing HIV awareness every opportunity that we get.
There are also some people who are throwing parties for us and relating that back to HIV at red-shoe events. The symbol for the “I Stand With NJWAN” HIV awareness campaign is a red shoe. At the kick-off party that took place in November 2009, NJWAN held a red-shoe contest. As an extension to the campaign, several supporters started to throw red-shoe parties in our honor. These parties are low-key events held in individual residences. They allow for the topic of HIV to be brought up in the comfort of one’s home. Participants are able to sign the “I Stand With NJWAN” pledge card and learn factual information about HIV/AIDS while enjoying the company of friends and colleagues. Every opportunity the agency has is a chance for us to advertise the NJWAN campaign.
In addition, two things that we are looking at doing immediately is signing up 5,000 individuals in the state to pledge to stay with NJWAN. Part of that was to have 1,000 notable women in the state of New Jersey say they absolutely stand with NJWAN. We planned to do some media connected with that. Right now, we have about 100 women signed up. Other than that, our goal is to increase people’s comfort level so they can discuss HIV and the behaviors that are related to HIV.
What else does NJWAN have planned?
We have a list of programs that we conduct, such as the Safer Sex Boot Camp, SISTA, Sister Connect and Sister Rise. We are also in the process of doing focus groups about stigma and mental health issues we hope will get funded by the Office of Women’s Health.
In addition, we are doing a 5K run on October 23. Then on November 1, we have our annual conference, which is the 22nd anniversary of our conference through Rutgers University Student Center. We are really excited about that because people come to the conference from all over the nation. There is no other conference like that in the nation. It takes place over multiple days.
In closing I’d just like to say that I’ve met some phenomenal women over the last 15 years I’ve been working in this field. They’ve given me energy and sustained me.
NJWAN is an amazing organization, and I don’t just say that because I work there. We have a large following, and we embrace the women in a way that they may not receive at other agencies. I think that is the thing that sets us apart.
Search: Monique Howard, New Jersey Women and AIDS Network (NJWAN), Loretta Sweet Jemmott, MD, the Black Women's Health Project at Newark Beth Israel Medical Center, HIV interventions, evidence-based interventions, HIV risk-related behaviors, 'I Stand With NJWAN' campaign
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