Becoming a Voice for Change
My favorite quote is one by Coretta Scott King: "Women, if the soul of the nation is to be saved, I believe that you must become its soul." In 2006, in South Carolina, those words took on real meaning for me.
The journey started for me in upstate New York, when I was diagnosed with HIV in 1988. I vividly remember being told that my test results came back positive and then being sent on my way with little direction or hope. I was finally trying to get my life together after battling drugs, domestic violence, depression, and homelessness. The only thing I knew about HIV was that the people who had it were gay, white, and male. So it made no absolutely sense to me.
About 16 years later I was living in North Carolina. My condition had changed from simple follow-up care to follow-up with HIV medication. I was in a Safety Net Medicaid Program, but after getting ill and not working for a couple of months, I was no longer eligible and had to rely on another program to assist me with my meds -- a Patient Assistance Program.
The constant worry about how to get my meds and the fear of disclosure at my job caused me to go into depression and added stress that affected my health. So I changed jobs, but now I had to wait 60 days for my new insurance coverage to kick in. I knew how dangerous it was to miss doses of my HIV meds, but it was a risk I was forced to take.
As God would have it, I got a job offer from the South Carolina HIV/AIDS Council, with Project F.A.I.T.H. (Fostering AIDS Initiatives That Heal). I was so excited that I finally could stop worrying if my employer knew I had HIV. I was also excited to work under Dr. Bambi Gaddist. For whatever reason, she saw something in me that I did not think possible myself.
Things were different in South Carolina. The stigma and discrimination were high, and at one point I felt like I was starting all over again. But one of the reasons Project F.A.I.T.H. came into existence was to help reduce HIV stigma, so I knew I had my work cut out for me.
I explained to my new case manager that I needed a doctor that was direct and to the point -- but I also needed someone with compassion for people living with this disease. Dr. Michelle Rojas was just what I needed.
But after my second doctor's appointment I received a notice from my insurance company that my HIV was a preexisting condition, so they would deny all of my claims unless I could prove that I had insurance for the previous 12 months straight. I hadn't. I had hoped to restart my HIV meds in January and now it was July. Deep inside, I could feel that things with my health were changing.
Now the battle began for me. My anxiety and stress level grew higher and higher and I began to feel like I had to go back to New York to get the assistance I needed. That bothered me because I was not looking for a handout -- I was looking for a hand up.
I was told I would have to change doctors because I did not have insurance coverage, but that the Patient Assistance Programs would not help because I did have insurance! On top of everything else, I was informed that there was a waiting list for ADAP in South Carolina. This really made me feel that I was caught between a rock and a hard place. Finally, with help from the North Carolina Department of Social Services, I was able to straighten out the insurance problem and get coverage for my doctor visits.
But I still didn't have prescription coverage, and I was afraid. I am a single mother with a lot of responsibility and didn't have a clue what would happen to my children if I didn't start my meds again soon. How would I pay my bills if I got sick and could not go to work? How would I feed my children? How would I keep the heat and lights on? These questions constantly plagued me.
I finally got insurance approval for my meds in December, but my co-pays were $120 a month -- money I didn't have. ADAP could help with that, but ... I was still on the waiting list! Then I came down with pneumonia and it was imperative that I start the meds right away. At that moment, I decided that I didn't want anyone else to go through what I was going through. It seemed that the government was spending money on so many other things that clearly didn't have anything to do with saving lives, including mine.
I was excited when the South Carolina AIDS Crisis Task Force was formed to end the ADAP waiting list. I knew I had to use my voice to help the cause. Even though I was trying to get over pneumonia, I felt empowered and pushed past my circumstances to make a difference. I knew that there was no turning back, and I joined the Task Force.
I had done a lot of speaking engagements over the years, but I was still not on the frontline. This was a call for something bigger -- being the voice of people who had no voice. I asked myself if this is what it meant to become the soul of a nation. I had learned that we are survivors, not victims. My decision to disclose has given me the greatest freedom I've ever known, but I know that real freedom is not free.
When I was first asked to speak in the rotunda of the South Carolina State House, I thought to myself, "What is the problem? Why do we have to go to such extremes to get people to take action when people are dying?" Four people had died while on the ADAP waiting list. So there I stood before the press that day with a lot of microphones and cameras in my face. Showing my face was the least I could do for all the people who have passed on!
After we won, I was able to thank the South Carolina legislature for releasing the funds necessary to clear the ADAP waiting list. It gave me an opportunity to let them know that even though my insurance company finally agreed to pay for my medications, I still needed ADAP to help with my co-pays. I let them know that those of us who receive assistance from ADAP are not just faceless and nameless people. We have families and most of all we have hopes and dreams.
For all that we have accomplished in this nation in the fight against AIDS, one major hurdle still remains: PWA empowerment. Those of us living with HIV must continuously ask ourselves, "Where is our voice? Am I a voice, and if not, why not?" Have we given up our power when a case manager or some other advocate speaks on our behalf? The ADAP crisis in South Carolina has convinced me of one critical thing: People with HIV, including those of us living in the Bible Belt, must step up to the plate. For no one will save us ... we must help ourselves if we are to survive.
And I have a personal mission today as a result of going through this struggle: I want to live, I want to love, and I want to leave a legacy.
Deadra Lawson-Smith is a Community Liaison and PWA Advocate for Project F.A.I.T.H., a legislatively funded faith-based initiative coordinated by the South Carolina HIV/AIDS Council.
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