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

December 6, 2010

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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."

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This article was provided by TheBody.com.
 
See Also
HIV/AIDS Year in Review: Looking Back on 2010 (and Ahead to 2011)
More Research on HIV Long-Term Nonprogressors

Reader Comments:

Comment by: Doug S. (Hamilton, Ontario) Tue., Dec. 7, 2010 at 12:12 am EST
Loreen;
It was very kind of you to mention the Opening Doors Conference in the same breath as events that were "momentous" & "milestones".

As to the "will" and the "way", I am convinced that the "way" to a functional cure is telegraphed through the innate ability of some HIV-positive people to keep the virus in check. While many have focused upon finding an elusive vaccine, it has always perplexed me that "something" remarkable has existed in our midst from the outset. Somehow, controllers were able to manage HIV in spite of the complexity of this retrovirus. Even with this living evidence there were skeptics who willfully ignored the facts. From my perspective, I would suggest that we need to frame the current search for an elusive vaccine by asking whether Newton postulated a law of gravity & then searched for a demonstration of his theorem or whether he observed a falling apple; whether Archimedes postulated a mathematical theorem on displacement or observed a bath filled with water? For decades the apples have been falling & the tubs overflowing as a subset of HIV-positive people controlled the mechanisms of the virus.

I for one believe that my best hopes for battling HIV probably lay in this genetic study.

Fortunately, there is both a will and a way.
And, as someone infected with HIV for 27 years, I can say that it would be especially fitting if (as I suspect will be the case) positive-people provide the solution to HIV disease. We will be able to say that the key to unlocking the mysteries of HIV always resided with positive-people. In which case, we're truly the ones we've been waiting for.
God speed to this research
Reply to this comment
Replies to this comment:
Comment by: Doug S. (Hamilton Ontario) Thu., Dec. 9, 2010 at 3:53 pm EST
Small clarification: the Central West Opening Doors is financially sponsored by the AIDS Bureau, Ministry of Health and Long Term Care -- the AIDS Committee of Guelph is not a financial sponsor.


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