Marvels, Milestones and Mom: The Ups and Downs in a Year of Functional-HIV-Cure Research
December 6, 2010
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.
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!
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.
This article was provided by TheBody.
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