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Getting to Undetectable: People Living With HIV Share Their Stories

April 12, 2013

HIV Treatment Cascade

An undetectable viral load: the point at which HIV, though still present, cannot be found in a person's blood with the most sensitive tests available. It's a powerful concept with profound implications to the life of a person living with HIV (and his or her partner). However, according to CDC's treatment cascade, for a host of complex reasons, 75 percent of people living with HIV in the U.S. have not reached the point of viral suppression. (Among some specific groups in the U.S., that number is even larger.) For many of those that have, reaching that point was a major milestone in their lives. We asked people living with HIV to contribute thoughts and stories about getting their own viral loads to undetectable.

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Minister Rob Newells

Minister Rob Newells

Oakland, Calif.; Diagnosed in 2005

Reaching undetectable never seemed like a significant milestone to me. I waited for my CD4-cell count to drop below 400 (about 18 months after my initial diagnosis) before I made the decision to begin antiretroviral therapy. My viral load, which was never extremely high, has been undetectable on every test since I started HIV meds in 2006.

For a long time, I thought viral suppression was a normal result of taking the medications. I expected nothing less. The HIV treatment cascade was a visual wake-up call that I am in the 25 percent minority. Clearly, we have much more work to do to increase retention in care and adherence to the medications that both improve the health of people living with HIV/AIDS and help to prevent transmission of the virus.

Meta Smith

Meta Smith

Baton Rouge, La.; Diagnosed in 2001

At the time I was told I was HIV positive, I was placed on meds and did not have any idea how being undetectable would help me. When I had been on the meds for at least three months I returned to the doctor after lab work and was told I was undetectable. I knew I was feeling better after the meds; but after being told what undetectable was and how it would affect my life, I need to say I was on TOP OF THE WORLD and have stayed that way since then. It meant the world to me and changed my life, for the better. I got busy living.

Nelson Vergel

Nelson Vergel

Houston, Texas; Diagnosed in 1986

I'm on the last combination I can try. I take a lot of pills. ... There's a part of me that's been very frustrated, extremely frustrated, with the fact that I've had it really hard when it comes to HIV. I've never had an undetectable viral load until three years ago ... Twenty-six years with virus in my blood, no matter what I did, no matter how many conferences I went to, no matter how many papers I read ... I felt like a loser, like a failure -- really, they call us "failure patients."

Watch Nelson's full "Day in the Life" video.

Bernadette Berzoza

Bernadette Berzoza

Denver, Colo.; Diagnosed in 1989

Over the past few years I have really fought and struggled to get my viral load down. It's been 23 years that I have been positive, and in the beginning it was just keeping your T cells up. Then the viral load was added. I was so freaked out when they told me my viral load was in the millions and we needed to change my meds to get it to undetectable. I did what was recommended but it wasn't working for me as they thought it would.

Read Bernadette's full story of getting her viral load down after many years.

Joe Ohmer

Joe Ohmer

Bronx, N.Y.; Diagnosed in 2002

Eight months after I was diagnosed with HIV, my gastroenterologist that was taking care of my liver issues did some blood work, and my HIV viral load was undetectable without any medication. I didn't realize that that was anything significant or insignificant at the time, until maybe eight or 10 years later when my GI doctor mentioned it to me. I went on a regimen of Epivir (lamivudine -- also used to treat HIV, in different combinations with a higher dose) and Hepsera (adefovir) for my hepatitis B, which since I've been on it has been undetectable as well. Except for one blip, my HIV viral load has been undetectable.

Recently, my GI doctor, who's the same one who saw me initially, brought up that I was undetectable before I went on any regimen.

Read the rest of Joe's unusual story of being undetectable without medication.

Melissa Baker

Melissa Baker

Mechanicsville, Va.; Diagnosed in 2007

I was diagnosed August 2007. By January 2009, I made the count-dependent decision to start meds. It took me longer than three months to become undetectable. If it had taken me any longer my provider was going to change my regimen, fearing a possible resistance. The day I heard "undetectable" finally came before he had to, and my virus has remained undetectable since. :) I was ELATED!

Reggie Smith

Reggie Smith

Atlanta, Ga.; Diagnosed in 1984

After being sick in 2005, I have been taking the antiretroviral combination that has kept my virus at undetectable levels, and allowed me to enjoy really good health. With God's grace, and enough desire to live well, I have been able to adhere pretty well to this regimen. My oldest granddaughter was 2 years old at the time. Now she is 9, and I have two other granddaughters, a grandson, and a set of boy/girl twins! I play softball and golf, take flying lessons, I am of service to my community, and I am blessed to share my experience and hope with you.

Read Reggie's full story of coping with being tired of taking HIV meds.

Lillibeth G.

Lillibeth G.

New York City; Diagnosed in 1992

When I was told my viral load was undetectable I felt 100 pounds lighter. My greatest challenge was getting to an undetectable status. I had multidrug resistance so getting to undetectable was a milestone.

I was diagnosed in 1992 and it was difficult for me to adhere to my treatment since I was in denial and angry at myself (I should've been more selective of my partner). During one of my doctor visits he found a clinical trial I was able to join for both Isentress (raltegravir) and Intelence (etravirine). I was determined to bring my viral load to undetectable since I have so much to live for; I needed to live for my son, my mom (she was alive at the moment), myself most of all; I have things to do, people to educate. After a 17-year fight, I got the GOOD news: "I'm undetectable!" It makes me feel so alive.

I have a whole new look at life: I'm going to live; I have a fighting chance. Now I can talk to others about the importance of getting to that point -- it gives you hope. I'm always smiling and laughing; life is so different for me now -- I have HOPE.

Pastor Andrena Ingram

Pastor Andrena Ingram

Philadelphia, Pa.; Diagnosed in 1989

THAT was another day, I remember with clarity. Waking up and dreading my doctor's appointment, because I knew I was going to get my blood-work results, and because I was about sick and tired of injecting myself. I was tired of Fuzeon (infuvirtide, T-20), I was tired of medication, I was just tired of it all.

I sat down in her office, and she pulled out my chart and looked at the labs, and smiled. I was like ... OK, what is my CD4? And it had been explained to me months before that they were beginning to look at this thing called "the viral load" ... and how that was more important than the CD4 count. She told me what my CD4 count was, which had peaked a bit ... but she was still smiling. And then she said: Guess what Andrena? Your viral load is under 50 copies! She was cheesin'! Grinning from ear to ear! I still didn't understand what that meant, until she stopped grinning long enough to tell me. That it meant that the virus in my body was undetectable …

Even though she explained it to me, I still didn't quite get it, until a few days later ... my mind had to process it. It meant that the Fuzeon was working. It meant that I was NOT gonna die (anytime soon). ....

I was ecstatic!

Read Pastor Ingram's full story of getting to undetectable.

Shannon Southall

Shannon Southall

Denver, Colo.; Diagnosed in 1992

February 1996, four years after being given my HIV diagnosis, I found myself lying in a hospital bed, and hearing that I now have AIDS. My CD4 count was 131. I needed to add more medication. When I was initially diagnosed in 1992, I had 896 CD4 and my first doctor put me on AZT monotherapy. After a friend found an infectious disease specialist I was switched to Zerit and Epivir.

Now lying in the hospital my doctor came in and said there was this new drug available called Crixivan and he strongly recommended that I add this to my current regime. My viral load was 159,000 and these new meds show that they can reduce the virus in my system, therefore prolonging my life. So of course I said yes. By August, my viral load was undetectable, less than 200, and my CD4 count was finally up over 200. ...

A few years ago I started to wonder about switching or stopping meds for a while. Then I met the man who would become my husband. He is HIV negative and I know that keeping my viral load down is crucial to maintaining a healthy sex life and reducing the risk of transmission to him.

Read Shannon's full story of 21 years on HIV meds.




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