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Marvels, Milestones and Mom: The Ups and Downs in a Year of Functional-HIV-Cure Research

By Loreen Willenberg

December 6, 2010

As an action-packed year for the HIV/AIDS community draws to a close, TheBody.com takes stock of 2010 in a new series of articles, "HIV/AIDS Year in Review: Looking Back on 2010 (and Ahead to 2011)." Read the entire series here.

This blog entry is dedicated to my sweet Mother, Marguerite Aletha Murchie, born August 3, 1917, died September 1, 2010, who always said, "Where there's a will, there's a way."

It's hard to believe that the end of the year is almost upon us, and I hear the echo of yet another piece of my Mother's advice: "The older you get, the faster time flies!" I must admit that she was right, as it seems that only a few weeks have passed since July, when TheBody.com invited me to review a sample of the many abstracts being presented at the XVIII International AIDS Conference in Vienna on HIV controllers and long-term nonprogressors (LTNPs):

Loreen Willenberg

Loreen Willenberg
Photo credit: Bob Roehr

Everything, including the HIV advocacy and research fields, seemed to go into overdrive from that point forward. We are now witnessing a tremendous surge of novel approaches to genetic-, immune- and stem-cell-based therapies, a renewed commitment to the development of vaccines, and resounding calls for, if not THE cure for HIV/AIDS, the next-best thing: a 'functional cure' (as represented by controllers and/or LTNPs -- the subject of a blog entry here on TheBody.com in December 2008) or a 'sterilizing cure' (eradication of the virus in the human host). Collectively, these endeavors represent marvelous works and lofty goals in this battle. We can do this, if there is a will to do it. So many lives depend upon it.

In August, I traveled east to donate plasma to the LTNP Study at the National Institutes of Health in Bethesda, Md., my fifth trip since joining that remarkable study in April 2006. It's always a pleasure to see the wonderful staff at Outpatient Clinic 8, and to learn what's new from the study's principal investigator, Dr. Stephen A. Migueles.

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This year, Dr. Migueles and Nancy Cogliano, RN, Research Study Coordinator, surprised me with the news that I had been nominated for membership to the NIH Clinical Center Patient Advisory Group (CC-PAG) -- an informal forum established in 1998 for patients to share thoughts, concerns and suggestions on patient care needs across the various NIH clinics. It was a gracious offer from them and one that I accepted.

With a sparkle in my eye, I showed them a copy of the Internal Revenue Service letter approving the Zephyr L.T.N.P. Foundation's tax-exempt and public charity status -- a major milestone that took more than four years to achieve. The Zephyr team can now begin to raise funds to underwrite the expansion of our activities (e.g., educational public seminars) and to assist us to implement programs that have been simmering on the back burner for a couple of years, such as a fund to reimburse the incidental travel expenses traditionally paid out-of-pocket by participants of HIV controller/LTNP studies here in the U.S.

On the first day of September, I received the call that none of us wants to get. My eldest sister was calling to tell me that our Mom had passed away, peacefully, a few hours before, with two of my sisters at her side. Mom was a true champion, having lost the use of her legs 20 years before to a congenital defect called cerebral arteriovenous malformation, or AVM -- typically defined as an abnormal connection between the arteries and veins in the brain. In an odd twist of fate, the AVM struck our mother at the base of her spine, making her diagnosis quite difficult in the beginning. Complicated neurological surgery and rehabilitation over a six-month period did not help her to regain the use of her legs, and unfortunately, she eventually became paraplegic. This was a real tragedy, since Mom was incredibly vivacious and physically active at 72 years young and had never been ill a day in her life. The only time she spent in any hospital, prior to this problem, was to give birth to her five healthy children, a son and four daughters. We marvel at the fact that the AVM did not surface during the births, and consider ourselves fortunate to have had such a wonderful mom, who is now resting in peace.

Later that month, news from the vaccine research front served to buoy my spirits. For the first time in many years, there is discernible hope for an HIV vaccine. In a commentary piece published in the September issue of the journal Nature Medicine, the Council of the Global HIV Vaccine Enterprise (GHVE) addressed the release of the 2010 Scientific Strategic Plan (also known as "The Plan"). On the first page of this article, the words that lifted my spirits were: "Although a highly effective HIV vaccine remains elusive, we have never been closer to the target." The Council goes on to discuss the "key advances in HIV vaccine research over the past five years," which include "new insights into the immunological and genetic basis for the ability of some people to control the virus or prevent virus acquisition (so-called 'elite controllers' and 'exposed but uninfected persons' [otherwise known as ESNs, or 'exposed sero-negatives'], respectively)."

As a community advocate, I was gratified to read that one of the qualitative 'targets' for achieving the objectives of Priority 1 of the 'Plan' calls for "strengthening community engagement to insure that communities and individual volunteers are engaged as true partners in the clinical trials endeavor." In their discussion of Priority 2 ("harness the full potential of preclinical models and the ongoing revolution in biomedical science") on page 985 of the article, I was extremely pleased to read these words: "It is also crucial that we deepen our understanding of the genetic underpinning of the interplay between host defenses and viral evolution that leads to such drastically variable phenotypes as, for example, exposed uninfected (ESNs), long-term nonprogressors (LTNPs) and rapid progressors."

In mid-October, the Zephyr L.T.N.P. Foundation hosted its second public symposium, called "Unlocking the Mystery of the HIV Controller -- II", at the Women's Building in the historic Mission District of San Francisco. Seven of the nation's leading HIV researchers (listed below) provided presentations to members of the HIV-positive community, medical providers and representatives of various AIDS service organizations (ASOs) on key advances being made in the fields of genetics, immunology and virology, thanks to contributions from study volunteers, on the human immune response to viral infections and disease. These important scientific advances are viewed as a gateway to novel approaches for immune and gene-based therapies and the development of vaccines for HIV/AIDS. They also suggest that HIV controllers and long-term nonprogressors, estimated to represent .3% to 15% of the globally infected population, represent a "functional cure" for HIV/AIDS.

The Foundation's governing board believes that educational events of this type help to build a bridge between the members of the HIV-positive community, medical providers and research professionals, and provides a casual setting for learning and social discourse on this intriguing topic. It was quite a profound experience to have 14 HIV controllers attend this symposium, twice the number from last year. Most of us were meeting in person for the first time, and the hugs I received will always remain one of my most cherished memories.

The Zephyr team would like to express our deep appreciation to the following clinical research investigators who graciously volunteered to spend their day with us:

A special presentation was given by Nancy Cogliano, RN, B.S.N., M.A., Nurse Consultant, NIAID/NIH, highlighting the important role of the Research Study Coordinator in building bridges between research and participants of clinical research studies. Dr. Jay Levy (UCSF) was not able to join us on this year's 'Researcher Panel', and was greatly missed. Thank you, one and all!

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Two weeks after that exciting day, I boarded a plane bound for Toronto, Canada. The initial steps toward this flight were taken four years before, at the 2006 XVI International AIDS Conference in Toronto, when I met a wonderful gentleman named Doug Smith who was working as a volunteer at the PHA Lounge in the Convention Center. Through the years, Doug has become a dear friend of mine and has always been intrigued by the subject of long-term nonprogressors, a topic that has not been well addressed in his region. Doug is a member of a group of dedicated community advocates who plan a yearly event called the "Central West Opening Doors Conference," a province-wide initiative whose mandate is improving regional HIV counseling, sponsored by the AIDS Bureau of the Ontario Ministry of Health and Long-Term Care.

In the Central West region, the conferences are an annual two-day event for the HIV/AIDS community, their family and friends, and care-givers (case managers, public health care nurses, etc.). This year's event was entitled "The Human Face of HIV," and I was traveling to present the closing 90-minute plenary address, "My Journey as an HIV Controller -- One Woman's Walk: On Building Bridges, Finding Community and Offering Hope," to over 100 people on the second day of the conference, November 3.

The audience members and I shared a 30-minute-long question-and-answer session during which we discussed my experiences as a clinical research subject, why researchers were searching for more 'controllers' and LTNPs, and my work with the Zephyr Foundation. Several community members were interested in the handout document I had prepared for them, a list of the various medical providers and institutions collaborating on studies of 'slow-progressors' of HIV in Canada.

The backdrop to this session was a slide-show comprised of the beautiful faces of 13 members of the HIV controller/LTNP community who generously shared their image with me, and, in some cases, their family and pets as well! I am indebted to them, and to my good friend Nancy, who suggested the idea, and to my nephew, Darren, who pulled the slide-show together on short notice!

And, marvel of all marvels, I met two 'controllers' on this wonderful day -- an elite controller who is a member of the Zephyr Foundation forum, and another who has lived with HIV for 27 years without medications and who has been searching for a clinical research study to join -- truly remarkable! My sincere thanks to everyone in Canada who made this visit possible -- your warmth, kindness and friendship will not be forgotten.

While I was flying home from Toronto, the International HIV Controllers Study (Ragon Institute) released its long-awaited Genome-Wide Association Scan (GWAS) results on 1,000 HIV controllers and 2,648 HIV progressors in the prestigious journal, Science. This important paper is the culmination of many years of dedicated investigation and dogged determination on Drs. Bruce Walker and Florencia Pereyra's part, not to mention the collaborative efforts between hundreds of institutions and medical providers they worked hard to coordinate around the world. Their findings provide a major piece of the puzzle in the search for an explanation of how we 'controllers' do what we do -- natural suppression of HIV infection without the aid of antiretrovirals (ART) -- insofar as genetics are concerned, and have been summarized by far better writers than myself these past couple of weeks.

Out of all of the articles I've read, however, one of the best descriptions appeared in a tiny article published by MyHealthNews Daily on November 8, composed by a woman by the name of Amanda Chan.

Why did I like this article? Ms. Chan captured the essence of the matter in layperson's terms -- easy to understand and hardly any 'med-speak' (scientific jargon) -- that really helped me to get on the 'page', and she held a terrific interview with Dr. Pereyra, too. Here's some of the text of the article, but I'll hope you'll read the full version when you have some time:

"Scientists have discovered tiny variations in human cells that make it possible for some HIV-positive people to lead healthy lives without taking medication."

"Variations in a protein called HLA-B may make a big difference in the body's ability to fight an HIV infection, said study researcher Dr. Florencia Pereyra, an investigator at Massachusetts General Hospital, Massachusetts Institute of Technology and Harvard University. Variations in HLA-B determine whether a person is an HIV controller, meaning he or she will stay healthy despite being infected, or whether the infected person will need medication to stave off the development of full-blown AIDS."

"HLA-B works by derailing HIV once it gets inside cells. When HIV enters the cell, "it builds a factory where more viruses are produced," Pereyra told MyHealthNewsDaily."

"The HLA-B protein grabs a piece of the virus and displays it on the cell surface -- akin to posting a sign in a factory window, Pereyra said - to alert the immune system the cell has been infected. Then, the body's antibodies can destroy the cell and the virus, she said."

"The finding is the first step in developing a vaccine that could mimic the natural immune response of a cell, Pereyra said, and it opens the door for new investigations to nail down how the mechanism can work so effectively."

I have much to be thankful for and look forward to more astonishing discoveries in the coming year. For now, I wish you a Happy Holiday season and a spectacular New Year!

CORRECTION: An earlier version of this blog post incorrectly stated that the Central West Opening Doors Conference is sponsored by the AIDS Committee of Guelph. The conference is actually sponsored by the AIDS Bureau of the Ontario Ministry of Health and Long-Term Care.

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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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