Music Promoter Maria Davis and Positive Women’s Network-USA Join Merck’s I Design HIV Education Campaign
by Chip Alfred
Maria Davis has lived a lot of life. She recorded on Jay Z’s first album. As a model, she appeared in publications like Ebony and Essence. Amother of two, she’s been an ambassador for amfAR. And she’s been living with HIV for nearly twenty years. Now she’s embarking on a new venture as I Design commemorates its second anniversary, joining team members Mondo Guerra [A&U, January 2013], fashion designer and Project Runway All Stars winner, and Duane Cramer [A&U, May 2013], HIV activist and award-winning photographer. Davis will serve as a spokesperson for the campaign, motivating HIV-positive women to be advocates for their own individual treatment and care plans. “It’s been a long time since women living with HIV have been represented in the media,” says PWN-USA Executive Director Naina Khanna, pleased that her organization will play a role in I Design’s focus on women.
“The care continuum for women is not really very good,” Khanna tells A&U. “Only about four in ten women diagnosed with HIV have the virus under control.” There are an estimated 2750,000 women living with HIV in the U.S., of which a disproportionate number are African-American. Davis says, “As an African-American woman living with HIV, it is critical for me to make sure my voice is heard in discussions with my healthcare team and I want to encourage other women living with HIV to do the same.” She predicts that, in partnership with PWN-USA, “we’re going to lead a powerful movement across the country.”
“Community leaders like Maria Davis who understand the nuances of our lives can help women by serving as role models, helping to amplify our own voices,” Khanna comments, emphasizing that women’s perspectives need to be lifted up higher in the broader conversation. “There’s nothing like another woman with HIV telling you what she’s gone through to be inspiring and to really start to break down some of the internalized stigma that women with HIV feel.” She adds that we can’t ignore the systemic barriers limiting access to care. Lack of financial resources is a major obstacle many women living with HIV face. “If you have a doctor and you’re going to get your medication paid for but you can’t afford the bus fare to get across town, how are you going to get to your appointment? We as a community really need to focus on understanding HIV as a human rights crisis.”
Davis, fifty-four, contracted HIV unknowingly from a man she planned to marry. She was diagnosed in 1995 when she had to take an HIV test to apply for a routine life in- surance policy. “Of course I didn’t think I was going to get HIV because at that time there wasn’t much information. We all thought it was a gay white man’s disease,” she recalls. “I thought I was going to die. I didn’t really have anybody to talk to and I’m in the music industry. The I Design campaign is so important because it’s not about what somebody else tells you. It’s about you asking those important questions to your healthcare providers.” One of New York’s premier music industry insiders who produces and directs showcases for signed and unsigned artists, Davis has leveraged her position in the entertainment industry to educate the community about HIV by partnering with orga- nizations such as Lifebeat–Music Fights HIV/AIDS, and BET Rap it Up Community Service. Her new mission is to make sure that everybody—especially the young women she encounters in the music business—speaks up for themselves and knows their status. She served as a keynote speaker for the National Black Leadership Commission on AIDS, and is a leader in the HIV ministry at the First Corinthian Baptist Church in Harlem. Davis says her diagnosis has helped her strengthen her religious and spiritual connections. “When you have challenges in life, you realize sometimes you don’t have anywhere to turn to but your faith.”
“This is a sexual disease, but the stigma is greater for women,” Davis notes, referencing the gender inequity that exists for people living with HIV. “I have had people ask me if I was a prostitute. That really blew my mind! They don’t ask men that question.” Another key difference between HIV-positive men and women is that women are primarily the caregivers in their families. “Over seventy percent of women with HIV have a child under eighteen. Sometimes we’re caregivers for elders in our families or extended families,” says Khanna.
According to Davis, for these women, the challenge is often putting their needs first. “We put everybody else’s business in front of ours—kids, husbands, significant others.” Khanna emphasizes the need for more women like Davis to become leaders fighting for their rights and improving the lives of women living with HIV.“Our response must be led by the communities that are impacted.”
Dr. Michael Gottlieb, a renowned HIV physician, reinforces the importance of vocalizing in conversations with your doctor how you’re doing with your treatment plan. “Communication is the cornerstone of the relationship between the patient and the physician. It’s got to be a give and take. It’s got to take the patient’s wishes into account. Each patient is an individual, and no two patients are alike.”
The ProjectIDesign website features a broad spectrum of innovative tools to help you take control of your own health and well-being. On the site you can download a conversation checklist, which offers tips on how to engage in a candid dialogue with your doctor; design a dig- ital textile illustrating your approach to managing HIV; take a quiz about women and HIV; and view videos, photos and more. There are two mobile and desk- top apps to help you track and manage your health, My Health Matters and My Positive Agenda. These user-friendly programs can help you document your symptoms, set up reminders when to take your medications, and keep a record of when you’ve taken them. All of this can be helpful when formulating your key discussion points for your next ap- pointment with your healthcare provider.
Davis believes the most important things to remember are not allowing HIV to define you, and bolstering your support system as well as your immune system. “We’re not just HIV. There is so much more to us. People think you have to be infected to be affected and you don’t. We all need to be educated. This fight is for all of us—not just people living with HIV,” she reminds us. “It doesn’t matter who you are or what color you are, HIV shouldn’t be a thorn in your side. If you learn how to advocate for yourself, you will be connected to a whole new world so you don’t have to be alone.”
At the United States Conference on AIDS (USCA), taking place from October 2–5, 2014, in San Diego, California, Maria Davis will join other I Design team members, Mondo Guerra and Duane Cramer, in a special interactive event during the plenary session on Saturday, October 4 at 12:45 p.m. Following the plenary, there will be a meet and greet event from 2:30 p.m.–4 p.m. where attendees can take part in a community activity and photo opps with the I Design team.
Chip Alfred is an A&U Editor at Large based in Philadelphia. He wrote about Positive Wom- en’s Network-USA for the March 2014 issue.