AS LITTLE AS FOUR years ago, precious few women in the country advocated HIV treatment for women. At that time, too many people still believed that women -- especially African-American women -- simply didn't need that kind of help. As a 36-year-old, HIV-positive, African-American woman with two HIV-negative children, Marcya Gullatte Owens knew better, though. We met several years ago at an AIDS-advocacy training conference in Atlanta; I knew almost immediately that she was not your average HIV/AIDS activist.
I've always marveled at Marcya's unassuming, humble character. Because many of the other activists I knew were so outspoken -- sometimes gratingly so -- I wondered how she would fare in the often-brutal world of HIV politics. My fears turned out to be groundless; I was pleased to watch on several occasions how easily she took on a room full of seasoned activists and doctors. I've seen Marcya at many conferences over the years and watched her involve herself more and more in a variety of treatment issues, especially HIV treatment for pregnant women.
Unfortunately, that increasing involvement put Marcya in a position familiar to many HIV-positive women and people of color. So many people needed and wanted her: to speak at a conference, to serve on a committee, to participate in one more conference call. If she didn't speak, who would? If she didn't join that committee, who would speak up for positive (and African-American) women? The perpetually growing pile of commitments would drain the energy of Hercules, let alone a self-effacing woman from Georgia.
Yet as exhausting as these demands are, Marcya has somehow managed to sustain her energy and continues to involve herself deeply with AIDS activism, her family, her church (she has been a devout Seventh Day Adventist from the day she was born) and her job as a freelance HIV prevention and treatment advocate. I was pleasantly surprised to run into her at an AIDS conference; we spent a couple of hours catching up.
What would you want people to know about your life and experiences?
I guess I would say that when you first receive your HIV diagnosis, it's like any diagnosis of a major illness ... you don't have to succumb. I mean, with cancer for instance, you wouldn't just sit back and wait to die. I didn't. Also, the power of suggestion is really strong. When I was first diagnosed in 1994, I went to a support group for women. Most of those women were talking about death a lot, death and dying. Nearly all of them are now gone. There were a few women besides myself who were focused on life, on living, and most of us are still here.
I found out that I was HIV positive because I got pregnant. I was in college; I was doing well. The guys I dated were athletes and guys who really had it together. I grew up in the Seventh Day Adventist Church. I practiced safe-sex methods 99 percent of the time -- leaving a one-percent window of opportunity to get pregnant and HIV. One percent was obviously enough. I became pregnant in my junior year of college, when I was 23 years old. After deciding to keep the baby, I went to a community hospital and was given an HIV test. Nearly six weeks after learning I was pregnant, I also learned that I was HIV positive.
Do you think coping works differently for women who find out that they are both positive and pregnant?
Yes. I knew that I had to focus on my pregnancy, on the baby. I really didn't have time to think so much of myself. When my daughter was born I named her Mariama, which means "gift of God" in Swahili. And she is, though she gets embarrassed when I tell people. We were blessed that she did not become infected. The only preventative method at the time was good prenatal care. They were just starting to learn about ACTG 076 [giving both the mother and the newborn AZT] and other ways to decrease transmission of HIV, so that was not available to me. I was in labor for three and a half days. My water was broken for well over four hours, and her head sat in my birthing canal for three hours. If that happened today they would probably have given me an emergency C-section or used other tools to reduce her risk. As it is, she is a miracle.
If I hadn't gotten pregnant, though, I would never have been diagnosed so early. I just didn't think of myself as being at risk. I feel lucky that I did find out. I was infected 13 years ago, and there's so much we didn't know then. I knew they said it could happen to anybody, but it just didn't seem real. But the truth is that if you're having babies, and you can't be sure that your partner is monogamous, then you are putting yourself at risk.
Did you ever find out how you contracted HIV?
I was diagnosed with herpes in the fall of 1992. I was diagnosed with HIV in January 1994. I was infected through heterosexual contact. It wasn't Mariama's father who infected me; he's negative.
How did Mariama's father handle everything -- the unplanned pregnancy, your HIV status?
He's getting there. He was clear at the beginning that he wouldn't be there for me. I never allowed myself to have any hate or animosity for my daughter's father, because she looks exactly like him. I hated his behavior, not him. Life was a big party for him. He participated in his daughter's birthdays twice; she's 12 years old now.
I grew up in a single-parent home and I didn't want my daughter to have that. She doesn't have a relationship with her paternal father. But she has a father -- my husband.
When did you meet your husband?
I met Roy in 1996, when I was starting ROSE [Radiant Open-Minded Self-Assured Empowerment HIV/AIDS Project, a nonprofit AIDS service organization targeted at African Americans]. We met at a church picnic for singles. I looked at him and said to my friend: That man is going to be my husband. The Holy Spirit -- or another higher power -- spoke to me quite powerfully, though he wasn't my type or anything.
Immediately, he really took to my daughter. In fact, he liked Mariama before he liked me; she was almost two years old then. We began dating, and after one month I told him I had herpes and HIV. Because he was a minister at the time, we decided to be celibate until we got married.
Marcya with her daughter Mariama. Mariama was born before Marcya met her husband Roy. If it weren't for Mariama, in fact, Marcya may never have gotten to know Roy; when the two met, he and Mariama hit it off immediately. Mariama, who was born HIV negative, means "Gift of God" in Swahili.
How long did you and Roy date before you got married?
We dated for a little over two years. After we met at the church singles picnic, he helped me with my business plan for ROSE. He had a computer, I did not, so we worked at his mother's house. When we met he had just graduated from Oakwood College with a B.A. in theology. We dated over the summer, and at the end of that summer I boarded a plane for a business trip, and he loaded up a U-Haul bound for Miami to begin his new job as a teacher for a Christian academy. The remainder of our dating years were through a long-distance relationship until just before we married.
How did he react when you first told him about your HIV/herpes status?
I knew that I cared about him, but that my heart would recover if he didn't accept me. Recently we spoke at a high school in South Georgia, and he said that telling him earlier in the relationship was the best way to disclose. At the time I disclosed, his response was that no matter what it was -- cancer, multiple sclerosis, or any other disease -- he would not let me go. His feelings were that if we were really meant for each other and we allowed HIV or herpes to come between that union, then we'd be the biggest losers. Not his exact words, but that's what I can recall.
Your husband was a minister. What impact did that have on your relationship -- not just in terms of your HIV status, but also in terms of your bringing a child into the marriage?
I sometimes believe that he was denied the opportunity to do any real work in the ministry because of me. The church does not look fondly on either situation, and at times I wonder if it's because most people would have a hard time having a first lady of the church who is HIV positive. I know other ministers who married women with children who were born out of wedlock, but I know of none who married women who also had HIV. Roy says that he's respected by his peers for making the choice that he did.
How did you and Roy come to the decision to have a child together?
I've always wanted to have two or three children. I met Rebecca Denison [founder of Women Organized to Respond to Life-Threatening Diseases (WORLD)] at the National Women's Conference in Pasadena in 1997 and saw her twins. Meeting them motivated me that it was possible to have a second child -- but not without a husband. Roy and I talked about having children while we dated. He wanted three more. I wanted only one more -- my first pregnancy and delivery was awful -- so we agreed on two more. When we made the decision my viral load was undetectable and my CD4 count was over 600. It appeared that my health would be strong enough to handle a pregnancy, so we went for it right after getting married.
How were the precautions -- doctor's visits, medicines, lifestyle changes -- you took during your second pregnancy different from those you took for Mariama five years earlier?
With my first pregnancy we knew very little about prevention of perinatal transmission. The primary prevention we used was very good prenatal care. With my second pregnancy I knew that I would take a drug cocktail and that I also had the choice of a C-section. As far as other lifestyle changes, I've always lived a very healthy lifestyle, so no major changes were required. Although, I did have more doctor visits with an obstetrician -- not much different then most pregnant women.
I also had a very severe adverse reaction to one of my drugs during my second pregnancy, which caused my liver enzymes to elevate ten times higher than normal range during my second trimester. There was no harm to my son. In my third trimester I went into pre-term labor six weeks early, and was placed on bed rest with medication to stop the contractions. With several trips back and forth to the hospital this worked for two weeks. My water broke with a slow leak on Mother's Day, four weeks before my due date. Omavi was born on Mother's Day, weighing seven pounds, three ounces. By the time his actual due date came around he weighed ten pounds.
Any more kids in your future?
Tell me about your daughter and son.
Mariama is 12. She really challenges me; she's so bright and so wise. She has actually come with me a few times when I've given presentations. One time she asked a guy whether he had male or female partners. Another time she told a woman she saw smoking during the presentation that she should stop, that it wasn't good for her. At church, she's often asked to do things that only older kids do. She can memorize things like you wouldn't believe. The pastor asked her to stand up and read the scriptures at Church one Saturday. She memorized the whole thing.
What does she want to be when she grows up?
Everything from being a "mommy" to a policeman or the President. She has incredible ambition, which is one of her greatest weaknesses and her greatest strengths. She amazes me with how assertive she can be in requesting what she wants.
How about your son?
He just constantly makes me laugh. He's seven years old now. One of his favorite games is to play hide and seek, which is not a good game to play in a parking lot!
You must have completely freaked out!
I did! It scared me to death. One minute he'll be there and the next minute he's gone. His first name, Omavi, is Swahili for "the most high," and his middle name is Ngozi, which means "blessing" in Ibo, a Nigerian language. He was my little neat freak. You wouldn't have believed it. He picked up his toys when he was done playing. When he finished eating, most of the time he'd bring his dishes to the sink. He's no longer a neat freak, though; now we affectionately call him "El Destruckto."
Do your kids know that you're positive?
Yes. Mariama has always known. We talk about it at home, but I had to tell her not to talk about it at school. The school is great, but it's a Christian private school, so I don't want her to have to deal with stuff with the other kids. Though she and my mother did bring the book My Grandmother Has AIDS to school and read it to the class, and we got the school to give a copy to every kid.
Have you always been such an activist?
Definitely! When I was in college I was on the student government. The first term I was a senator, and the second term I got elected as the senator-at-large without even campaigning. People just knew I could get stuff done. I modeled. I ran on the track team.
My mother was probably my first example of true activism. As a battered wife she left my father when I was two years old and divorced him shortly later. She has taught me how to advocate for what is right, no matter how simple or big it may appear to others. It is not a question of being liked or disliked, it is a matter of right and wrong. My first "act" of activism was during high school in Ohio, when a group of us junior and senior girls started calling ourselves the B.R.O.N.X. Girls. We were like a sorority, but one of our goals was to look out for and support the underclassmen and underdogs. Many of us in that group had experienced negative treatment from other classmates when we were the underdogs. We became one of the most popular groups on campus.
I think the death of my best friend in college made me even more of an activist, though. He was so incredible; we had such a great friendship. He died in a car accident, and it was so devastating. He had such a temper, and now I've got it.
Marcya in Atlanta's AIDS Survival Project's (ASP) treatment resource center. In the two and a half years she worked at ASP, she did everything from community outreach to treatment advocacy. Her job included treatment counseling for patients, bi-monthly treatment forums for the positive community and monthly treatment articles for the ASP newsletter. She also did outreach to women and African Americans. She continues her HIV prevention and treatment advocacy work currently as a freelance consultant.
Some articles by Marcya:
How did you get involved with AIDS activism?
I first came into contact with AIDS Survival Project [the largest treatment resource center in the Southeast] in Atlanta in 1995. I attended Operation: Survive! [now the THRIVE! weekend]. I was so impressed by the HIV-positive and HIV-affected facilitators and presenters that I committed to being just like them as I grew during my positive years. In 1996 I developed ROSE, my own nonprofit AIDS service organization. The program had some similarities to AIDS Survival Project but was targeted to the African-American family. I went to Jeff Graham, AIDS Survival Project's executive director, for tips on how to develop my organization. In 1997, being the activist that I am, I was at another organization, AID Atlanta, for a community forum on HIV names reporting, and my outspokenness got me invited to join AIDS Survival Project's advocacy committee.
I was bold enough to request a position at AIDS Survival Project as a community-outreach coordinator, a position that at that time did not exist. In April 1998, I became their first Community Outreach Coordinator, starting out part-time and then moving to full-time by September of that year. By June of 2000 I had been promoted to Program Manager for Treatment Education.
You also worked for DuPont, a pharmaceutical company now part of the Bristol-Myers Squibb Company. How did that come about?
I am still amazed sometimes that I worked with a pharmaceutical company. At the National AIDS Treatment Activists Forum in 1999, I was invited to a dinner with other advocates and the man who was to become my boss. I can remember distinctly being quite assertive about my dislike for the drug this company makes. I guess they liked my assertiveness. It appears that speaking out and being the squeaky wheel got me noticed, and they also saw my skills as a program manager. I don't wish to brag about myself; God has blessed me with a talent to do very effective work in this community, and so one of my jobs was working as Associate HIV Community Manager for Bristol-Myers.
I remember when I first took the job I weighed the pros and cons very carefully. I thought about the people I worked with in Atlanta. I worried, "Will they think I'm a sell-out? How can I do this when I've been an activist for so long?"
Then I thought about all of my gay, white, male HIV-positive counterparts. So many of them came from corporate America and are now receiving great disability packages. I thought I deserved a piece of the pie. Through it all, I kept thinking about my kids. They've never had a real vacation in their entire lives. They don't get stuff -- stuff that so many other children take for granted. They wear mostly second-hand clothes. I guess the most frightening thought was what would happen to them if I got sick, if I had to go out on disability? Maybe some people would be angry with me, but what would those same people do for my kids if I died? Would they be there for them?
I'm doing well now, and I could live for an eternity. My grandpa lived until he was 96 -- more than 15 years after being diagnosed with prostate cancer -- but we just don't know. Now I'm doing freelance speaking about HIV prevention and treatment.
So how has it been since you left AIDS Survival Project?
So far, so good. Most people took the news very well. They were pretty understanding. And my kids love it! I get to work at home. I can pick them up from school. I get to really spend time with them.
Sometimes my work can take me away from my family for a week or two at a time. I worried this would upset them, but my daughter has actually been doing better in school and she once told me that when I am away it is just like when I was "at the office" in my old job. She loves it when I am home, though, and she feels like she gets more time with me now. My husband and my marriage are better than ever. My son is the one who probably has the hardest time when I am away. I am still working on ways to make it easier for him. I love the flexibility of my work; it gives me an opportunity to balance the work, my family, my personal time and church around each other so that I now have a very balanced life. I love the ability to create and develop and make a real difference in a community to which I have dedicated my life. Having real money backing me up is also a big bonus; it helps deliver positive results to enhance our community.
Despite increased awareness of the risks for contracting HIV, people are still becoming infected. What do you think would help?
We need to have more people who are willing to come out and talk about being HIV positive: the athletes, other famous people. It needs to stay in our minds, but everything has become so quiet now. I know that so many of my own role models have died or are tired and not out there as much now.
AIDS activists like Debbie Thomas-Bryan, who died in 1999; Tracie Edness, who died in 2000; and Kuroyima Kyoshi, who also died in 2000. That puts more pressure on me to tell my story and to mentor others. I get tired -- so tired -- but I know my higher power has called me to speak out. I need to take care of myself, and take breaks once in a while, but every time I think I'm going to just start living a normal life again I get this feeling. I have to stay true to myself, and to my God, and I realize that my work is not done.
It's hard, though. Each time you speak you are so exposed. There are parts of my life that I would prefer other people not know, but it's part of my job. You don't realize how much people think they know about you after they've heard you speak. Somebody will come up to me, and act like they're my best friend or something, but I don't even remember them. It's not always a good feeling.
How do you manage to balance caring for two children, taking part in all your various activist responsibilities, and working full-time while watching yourself to make sure your HIV stays under control? Do you get lots of help from family/friends, or are you just Superwoman?
At this point that is a very bad question, because I'm starting to really question my own sanity. I am definitely not a superwoman, and if it weren't for family and friends -- but especially my husband, Roy, and my "Father," God -- I don't believe I would have made it this far.
|MARCYA'S POST-DIAGNOSIS MEDICAL HISTORY|
|CD4+ Count (Jan. 2006): 303, 18%|
|Viral Load (Jan. 2006): 123,000|
|Medications, Side Effects and Illnesses (chronologically)|
|Started Viracept (nelfinavir), 3TC (lamivudine, Epivir), AZT (zidovudine, Retrovir)|
|Switched to saquinavir (Invirase), 3TC, d4T (stavudine, Zerit)|
|Developed extreme heartburn during 1st pregnancy|
|Switched to nevirapine (Viramune), 3TC, AZT (after 1 year)|
|Liver enzymes 10x higher than normal during 2nd trimester of 2nd pregnancy|
|Switched to saquinavir, 3TC, AZT; later added abacavir (Ziagen) as booster|
|Developed heartburn; struggled with pill burden|
|Switched to Droxia (hydroxyurea), d4T, ddI (didanosine, Videx), abacavir|
|Switched to saquinavir, ritonavir (Norvir), Combivir (AZT/3TC)|
|May-Nov. 2001: structured treatment interruption (stopped all meds)|
|Nov. 2001: stopped structured treatment interruption; started d4T, tenofovir (Viread), efavirenz (Sustiva, Stocrin)|
|2002: experienced wasting (lost 25% of her body weight since Nov. 2001)|
|2006: structured treatment interruption|
|Save her structured treatment interruption, Marcya has tried no alternate therapies; supplements taken have included calcium, goldenseal, magnesium, milk thistle, multivitamins, optimune and vitamin B-complex.|
|Marcya has experienced virtually no problems related to her herpes co-infection.|
Marcya Owens can be reached via e-mail at MarcyaOwens@msn.com.