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.
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