HIV Controllers Speak: Our Link to a "Functional Cure" for HIV
By Loreen Willenberg
December 14, 2008
Not all HIV-positive people are alike in their ability to control HIV. An estimated 1 in 300 HIV-infected persons around the world have a mysterious ability to control their HIV. Their viral loads and CD4 T-cell counts remain in the normal range without their having to take any HIV medications. Researchers call these individuals "long-term non-progressors."
As people who have read my blog before know, I am a lucky member of this exclusive group. But I'm writing about this again because I don't think enough attention is being paid to the amazing ongoing research with long-term non-progressors and the strenuous efforts to recruit even more of these people.
For one thing, there are still so many long-term non-progressors in the world who are unaware of how critical it is for the entire HIV community that they volunteer for clinical research studies. Why is this so important? Many scientists, for example, believe that if we could only figure out the mechanism that causes people like me to control HIV successfully, we may find a cure for HIV or perhaps a way to prevent HIV from being transmitted in the first place.
For everyone reading this, imagine you've just been told that you might represent a "functional cure" for HIV -- that somehow your immune system or genetic make-up works to prevent HIV from spreading throughout your body. The only problem is that no one -- not even these brilliant HIV researchers -- can tell you why.
What would your first thought be? Disbelief? Confusion? Joy? Relief? What questions would you ask? Who would you tell? Would this information change the way you live your life? If not, why? If so, how?
For long-term non-progressors, learning about our unique immune system or genetic composition can be an empowering experience as we realize our remarkable potential to benefit the larger HIV community.
I am constantly amazed at how many members of the HIV controller community all say the same thing, that they want to help in any way they can, and will continue to contribute blood, cells and tissue samples to the studies for as long as they are needed.
In the four years since my own journey as a participant in these studies began, I have been humbled by the very real possibility that my "cousins of control" and I may reveal valuable clues to the breakthrough in this battle against HIV.
HIV Controllers Speak
While research continues in the academic and scientific circles, we seldom hear from the HIV controllers themselves. I've asked several members of this unique group for their thoughts on being linked to a "functional cure" for HIV, and here is what they have to say:
Jeannette, 32 (Washington State)
"I am all for this research and anything positive doctors, researchers and people are doing for this epidemic. I was diagnosed HIV-positive July 17, 2002 ... exactly one week before my 26th birthday. I had two options -- go into hiding, wasting a wonderful life with my family, friends and opportunities still waiting for me, or get up, wipe my knees off and move forward. I chose option number two and have never looked back since.
"I am not a hugely religious person by any means. I do believe there is a higher power than us. I know there is a reason for me being here, healthy without meds and blessed with three beautiful children. I do not question why every day, and am excited in taking part in the current research that is underway in Massachusetts after I deliver my daughter on December 17. Thank you for taking the time to read this."
Scott, 54 (San Francisco, Calif.)
"When I think about how hard the research community is working to figure out our mechanisms of control (of HIV), I realize how complicated and difficult the process is. I worry that a vaccine may not happen in my lifetime, and because of this worry, I hope that more publicity happens to shine a brighter light on the topic of HIV controllers and their importance to science. Efforts like the Zephyr Foundation are important in getting the word out, because this is how the epidemic will be changed."
Pam, 50 (Brooklyn, N.Y.)
"Knowing there is a possibility that a cure for HIV/AIDS may someday come about through elite controllers such as myself is almost unreal! Once I learned that I was different (in the way my body reacts to HIV infection), I had to do whatever I could to help. I don't care about being a "chief" -- I just want to be an "Indian" (so to speak) in this HIV arena. I, like everyone else who learned they were HIV positive, felt that this disease was "dirty." Every month when I did the "woman thing" I cried because my blood could actually hurt someone else. I became overly protective of myself and others.
"Today, I thank people like Loreen Willenberg who take time out and explain things to me that I don't understand about elite controllers. I knew all my life that I was different, I just didn't think HIV would be the thing to bring it out of me. I pray that my blood can help somebody, and I pray every time researchers take our blood (samples) that more news will be found. I love the position we elite controllers are in, as we somehow have been 'commissioned' to educate others about the remarkable circumstance we live with -- including the medical professionals who care for so many. It would seem that we do represent the future in some way."
You can see that I'm not alone, even if I'm one of the few HIV non-progressors who is outspoken and public.
So now I'd like to share a little bit of the history of HIV non-progressors. The first description of "long-term non-progressors" was in early January of 1995, when the researchers at the National Institute of Allergy and Infectious Diseases (NIAID) published a paper in the New England Journal of Medicine detailing studies of a small minority of HIV-infected people who remained healthy for many years without loss of immune function.
Long-term non-progressors were not only named at this time, there were also rather strict definitions of who would qualify as members of this group.
The following individuals could qualify as long-term non-progressors:
Of the 15 people that had been studied in this very first NIAID study, 13 had been infected for at least 10 years. All 15 had high counts of CD8+ T-cells. (Viral loads were not discussed in these findings, because viral load tests were not available until the following year.)
Dr. Anthony Fauci, director of NIAID, was a co-author of the paper and he said, "Further study of these individuals may lead to insights into the mechanisms that prevent progression of advanced HIV disease."
This is the critical point. If people like me can somehow control HIV naturally, wouldn't it be great to discover this mysterious ingredient and share it with the millions who need medications to control their HIV?
Over the past decade, studies of long-term non-progressors have expanded throughout the United States and into Australia, Canada, France, Italy and Spain to advance discoveries on the unique methods of control that are exhibited by these rare individuals. Scientific papers on the topic of HIV controllers (as we are now called) have multiplied as more is learned about our immune responses to the virus and genetic factors that may contribute to our control of HIV.
Following years of long-tern non-progressor studies on a small scale, in 2006, Dr. Bruce Walker, the renowned immunologist and HIV/AIDS researcher in Boston, Mass., launched the International HIV Controller Study, an unprecedented multi-institutional effort to search for and recruit additional study subjects in two categories to attain 1,000 "elite controllers" (viral loads below 50 copies, no history of medication) and 1,000 "viremic controllers" (people able to maintain viral loads at or below 2,000 copies, without medications). This goal is a herculean task, as many scientists claim that finding a "controller" is like "looking for a needle in a haystack"!
When I enrolled in Dr. Walker's study in October of 2004, there were only 65 participants. As of today, there are 450 elite controllers and approximately 708 viremic controllers enrolled in the Boston study, a remarkable number when you consider how difficult it is to find us.
In addition to the current number of participants who contribute to the International HIV Controller Study, I though it would be interesting to learn more details about the HIV controller group as a whole, including where they live, the ethnic groups they belong to and their genders.
My request for data was kindly granted by two of the most prominent research professionals in the field, Dr. Walker and Dr. Steven Deeks (University of California, San Francisco -- S.C.O.P.E.).
These breakdowns are only estimates and are not a reflection of the general population of HIV controllers.International HIV Controller Study -- Boston, Mass.:
Cohort totals: 450 elite controllers, 708 viremic controllers
S.C.O.P.E. Study, University of California at San Francisco -- San Francisco, Calif.:
Cohort totals: 80 elite controllers, 135 viremic controllers
The hope, of course, is that the more long-term non-progressors we have enrolled in clinical research studies, the greater the opportunity to study them and make critical discoveries -- either towards creating a vaccine or a unique HIV treatment.
Longtime activist Martin Delaney used the term "functional cure" in 2001 to describe the suppression of HIV through medications in an outstanding article entitled "Here Comes the Cure" [POZ Magazine, January 2001]. Do HIV controllers imply a "functional cure" for HIV infection? Here are some remarkable comments:
"If the mechanisms of control can be defined (in HIV controllers), they can help in the design of an HIV vaccine" -- Dr. Guido Sylvestri, associate professor of Clinical Pathology at the University of Pennsylvania, at the very first HIV/AIDS Vaccine Summit sponsored by the National Institutes of Health in Bethesda, Md., in March 2008.
Dr. Anthony Fauci, during his presentation entitled "The Future of AIDS Research" at a special session held at the 2008 International AIDS Conference in Mexico City, claimed that HIV controllers clearly represented a "functional cure" for HIV "given their natural suppression of HIV infection."
In an opinion piece for the Wall Street Journal, Dr. Luc Montagnier recently wrote about the complex nature of HIV and the challenge it represents to the design of an effective vaccine. He said, "We now know that protection against HIV is possible in natural conditions" and acknowledged there are "(similarly), some rare individuals (who) become infected with HIV but do not progress toward immunodeficiency and AIDS." He continued, saying, "We want to extend what Mother Nature bestows upon a few lucky individuals (infection without disease) to a majority of patients."
So if you are someone who belongs to this tiny group of HIV-positive people, or you know someone who belongs to this group, please, please find the closest clinical trial and volunteer. Visit this link to see what studies are currently enrolling. Often you need only send a blood sample ...
To contact Loreen, click here.
BLOG: Life as an Elite Controller
Photo credit: Bob Roehr
Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. In fact, she's created a new organization for people like her called the Zephyr Foundation.
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January 10, 2012 - Memories of Bonnie G.: A Blog Entry by Loreen Willenberg
November 28, 2011 - Radio Hope: A Blog Entry by Loreen Willenberg
February 7, 2011 - On-the-Air: My First Radio Interview -- "Have You Heard of HIV Long-Term Nonprogressor?": A Blog Entry by Loreen Willenberg
December 6, 2010 - Marvels, Milestones and Mom: The Ups and Downs in a Year of Functional-HIV-Cure Research -- A Blog Entry by Loreen Willenberg
July 23, 2010 - The Alphabet Soup of Immune Control: ADCC Antibodies, (Memory) B-Cells, Elite Controllers and Exposed Sero-Negatives -- Will They Amount to Z? A Blog Entry by Loreen Willenberg
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