Zephyr Foundation

At 52 years of age, I find myself living a remarkable life on the HIV+ front. There are important researchers across the United States including me in the exclusive sub-group of long-term non-progressors (LTNP’s) known as ‘elite controllers’.  My cohorts and I are asymptomatic ( no opportunistic infections), are treatment naïve, register undetectable VL’s (Viral Loads), and show consistently high CD4 counts (some as high as 2,268). As of this writing, only two-hundred fifty (250) of us are known to exist in the world, and I have been told that we represent a minute 1% of the globally infected community.

Other terms describing our sub-group are: gifted, special, lucky, rare, miracles, CD4 factories, beacons of hope, holders of important clues, and heterogeneous (differing in nature or kind.)

Since my original diagnosis in July, 1992, I have been re-tested on seven (7) separate occasions, all positive for the HIV-antibody. It is known exactly when I sero-converted, and at one time, I was even told by an HIV physician that it was his opinion that I had ‘cleared’ the virus. (Later proven untrue.)

Early on, my physician (Internal Medicine Specialist) and I realized that my lab results were unique, and searched in vain for years to locate clinical studies investigating the phenomenon of my consistently high (1800 – 1900) CD4 (T-Cells, or Fighter Cells) with an undetectable Viral Load (VL). Our search ended when POZ Magazine published an article alerting us to research being conducted by Dr. Bruce Walker in Boston ( “Unleash Your Inner Guinea Pig…” by David Gelman, M.D. November 2004) on long-term non-progressors, or LTNP’s.

With a phone call and an overnight shipment of 15 vials of donated blood, I entered the world of immunologic research. Dr. Walker and his colleagues comprise an organization called Partners AIDS Research, a collaboration between Massachusetts General Hospital and Harvard Medical School. The specific goal is to study immune, viral and host factors present in this ‘unique subset of HIV infected persons’ who spontaneously control viral replication. A flier provided by Partners says: “It is our hope that the results of these studies will contribute substantially to our current knowledge of HIV immunopathogenesis and vaccine development.”

Dr. Walker, a world- renowned immunologist, says: “There is an urgent need to understand the factors that allow some (positive individuals) to coexist with HIV and not suffer any apparent ill consequences”(POZ, November 2004, ‘Unleash Your Inner Guinea Pig’) and differs from his virologic colleagues with his well-known claim: “Complete eradication (of the virus from the host body) is not required. The immune system can control HIV.” (POZ, December 1998, ‘Reboot Your System’).

Months passed before I received initial news from Partners. In spring of 2005, Dr. Florencia Pereyra, Dr. Walker’s colleague, called to tell me they were witnessing ‘surprising’ results from my donated blood. They exposed my CD4’s to a variety of different viral proteins, and the results indicated an ‘unusually strong’ immunologic response to a high percentage of them—50 to 60%, instead of the typical 20 – 30% usually seen. She also confirmed that I carried the genetic marker called HLA-B57 (now known as the ‘European Descent Gene’, the gene carried by survivors of the Black Plague), which sparks the immune system to respond briskly after infection and continues to suppress HIV.

Dr. Pereyra inquired whether I could travel to Boston to donate a ‘fresh’ blood sample (one not shipped), but also indicated that funds to ‘import’ participants were not available at that time. I began a series of telephone calls to several different organizations to no avail, quickly becoming aware of the lack of financial support for individuals wishing to contribute to studies in distant cities (or countries).

In the midst of these calls, I inadvertently reached the Clinical Research Coordinator for UC Davis, California, Medical Center, Division of Infectious and Immunologic Diseases, and learned about several clinical studies being conducted not far from my foothills home. We immediately made an appointment for a blood donation, and within two months, I was enrolled in three studies: 1) Cellular and Humoral Immunity, Dr. Richard B. Pollard, primary investigative physician, 2) Mucosal Immune Responses, Dr. Pollard, and 3) Cell-Mediated Immune Responses to HIV-1 in Gut-Associated Lymphoid Tissue (GALT), Barbara Shacklett, PhD, primary investigator. I have donated blood, saliva and tissue samples from my vagina and my rectum toward these important studies. In December 2005, Dr. Shacklett called to tell me the virus could not be located in my rectal tissues.

Funds with which to travel to Boston did eventually come through, and I visited Partners AIDS Research Group in December 2005.  It was my privilege to meet Drs. Walker, Pereyra, and Ueda as they toured me through the large research facility in Charleston, Massachusetts. After donating a pint of blood, I was toured through the laboratories performing the actual ‘research’.