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Is it possible never to be on Meds (ELITE CONTROLLERS)
Aug 19, 2007

Hello Dr Bob,

Is it poosible (or have u ever heard of someone) that is POZ and have never been on Meds or needed meds. I am POZ. I have been POZ for a year. My T-Cell is 860 with undectable Viral. I guess I am holding on to hope I will never need meds. Is it possible?

Response from Dr. Frascino

Hello,

Is it "poosible?????" Considering Dubya and Voldemort (I mean Cheney) were reelected, I assume anything is "poosible!"

Seriously, yes, it is possible. A small number of poz-people have remained healthy and not shown the usual slow immunological decline associated with HIV/AIDS. We call these folks "elite controllers." See below. We also call them damn lucky! Will you be one of them? Time will tell. I certainly hope so!

Good luck!

Dr. Bob

No Meds (ELITE CONTROLLERS) Jul 27, 2007

I have been positive since 1992, and monitor my numbers religiously. I doubt that since this is a drug sponsored site this will ever be published, but it would be doing a service to note that NOT being on meds is what has kept me alive - as I watch others shrink, bloat and pop -- wishing they had never either. Also, what is the proposed co-factor along w/ HIV (as put forth by Montagnier - who believes HIV is not enough). BTW, my highest CD4 counts (non-blips) have occurred in the 14th year of infection and have remained range cound throughout.

Thanks.

Response from Dr. Frascino

Hi,

As you can see, your doubts that your comments would be posted are unwarranted. Yes, the site does have some pharmaceutical company sponsorship (otherwise it wouldn't be able to function as a free service to all in need), but I can assure you I do not! The experts here present scientifically-sound information not product marketing!

Next, I'm delighted you are doing well never having taken medications. Although I have no idea what ". . . have remained range cound throughout" means, it appears that you may be one of the extremely small and very lucky HIVers who we call "elite controllers" or "non-progressors." We are actively studying such folks to gain additional information as to why HIV has not progressed in cases like yours. (See below.)

As for others who "shrink, bloat, and pop . . . ," I certainly will admit taking HIV meds is no picnic and the side effects can be challenging. However, please note that these medications are for many of us absolutely live saving. I have no doubt I would not be here today responding to your question without them! The miraculous decline in HIV/AIDS morbidity and mortality that occurred simultaneously with the introduction of HAART (highly active antiretroviral therapy) in mid-1996 cannot be denied. So even though you have done well not taking medications, please don't be so presumptuous as to assume those of us who did "wish we never had!" I can assure you that is not the case!

Finally, Montagnier's cofactor concept dates back to the early 1990s. That's ancient history in HIV/AIDS terms! We have learned much since then about HIV pathogenesis. I suggest you spend some time perusing the wealth of information on this site! You have much to learn!

Dr. Bob

Who Are the Elite Controllers?

By Bob Huff

December 2005

Who are the elite controllers? No, they're not initiates of Yale's secretive Skull and Bones Society or members the Trilateral Commission. Elite controllers are people infected with HIV who have been able to suppress their virus without using antiretroviral medications. And Dr. Bruce Walker of Boston wants to meet them and find out how they do it. It's been appreciated for many years that some people with HIV do not progress to AIDS at the same pace as most. Typically, the immune damage of untreated HIV infection will lead to life threatening opportunistic infections within eight to 12 years. But some people have been infected for 20-25 years or more and have not yet experienced the severe loss of CD4 immune cells that signals AIDS.

These people have been termed long-term nonprogressors, and in the mid 1990s, researchers began studying them to try to understand why some people progressed to disease and others didn't. The ultimate hope was that whatever protective qualities these people carried naturally could be stimulated in everyone. There are also other long-term survivors of AIDS who have experienced immune damage but have managed to thwart the virus with treatments, although these people may also have had help from their immune system or a genetic resistance to HIV.

For Walker and colleagues at the Partners AIDS Research Center who are coordinating the study, duration of infection is not the main criterion; they are looking for anyone who can control their HIV without drugs. Elite controllers are defined as people with asymptomatic HIV infection not taking antiretroviral therapy (ART) who have experienced at least one year with HIV RNA below 50 copies/mL (undetectable). Participants must have at least three sets of test results documented within one year. Occasional viral load blips up to 1,000 copies/mL are allowable.

Walker estimates that there may be 1,500 or more elite controllers in the United States. The research group has already collected blood from over 100 people and has set a target of enrolling 1,000 elite controllers into the study. They are also interested in finding a similar group of people with asymptomatic HIV infection who, while not undetectable, do manage to keep their HIV RNA levels under 2,000 copies/mL without drugs. Walker calls these people, who may be much more common, viremic controllers. A long list of prominent HIV physicians have signed up to scout for elite controllers, but individuals who think they fit the criteria can contact Walker's group in Boston directly to submit a blood sample.

The study plans to use gene sequencing techniques of the Human Genome Project to construct a haplotype map for each participant, in hopes of identifying genetic factors that may be contributing to their ability to control HIV infection. A haplotype map allows scientists to look for variations in genes as they are commonly organized on the chromosomes. Advanced data analysis will evaluate if multiple gene variants are possibly associated with spontaneous control of HIV. Genetic sequencing and data analysis will be performed at the Broad Institute in Boston. Additionally, high resolution HLA typing will be conducted to look for genetic differences in these immune markers, and adaptive immune responses and antibody studies will also be performed. The entire genome of each person's virus will also be sequenced to see if some viruses are more controllable than others.

These new genetic tools allow researchers to take the closest look yet at what might make those lucky few who can control their HIV without drugs different from everyone else. If they can uncover some previously unrecognized protein or mechanism that is common to all elite controllers, then the next step will be to look for a drug than can safely produce the same effect in everybody else.

Researchers to Study HIV-Positive "Elite," "Viremic Controllers"

August 17, 2006

Researchers on Wednesday at the XVI International AIDS Conference in Toronto announced plans to conduct a collaborative study on HIV-positive "elite controllers" and "viremic controllers," the Washington Post reports (Brown, Washington Post, 8/17). Elite controllers are HIV-positive people whose immune systems for long periods of time have been able to keep the virus at undetectable levels without using antiretroviral drugs. Viremic controllers are HIV-positive people whose immune systems have kept the virus at barely detectable levels without antiretrovirals. Researchers believe it is unlikely that elite or viremic controllers can transmit the virus (Kaiser Daily HIV/AIDS Report, 7/6). Bruce Walker, director of Partners AIDS Research Center at Massachusetts General Hospital, and colleagues already have enrolled 200 elite controllers in a study, and the researchers in the next six months plan to enroll 1,000 more elite and 1,000 viremic controllers, Toronto's Globe and Mail reports (Abraham, Globe and Mail, 8/17). The researchers plan to compare genetic sequences of the elite participants with other HIV-positive people, as well as HIV-negative people, to determine whether there are genetic variations that can explain why elite and viremic controllers can suppress the virus (Fox, Reuters AlertNet, 8/16). Researchers need to enroll at least 1,000 elite controllers, so that their genetic findings can have significance, the San Francisco Chronicle reports (Russell, San Francisco Chronicle, 8/17). "We're looking at people whose bodies durably live with HIV without it causing a problem," Walker said (Chase, Wall Street Journal, 8/17). "If we could discover how these individuals can coexist with this virus without damage to their immune system and could find a way to replicate that ability in others, we would have a recipe for halting the HIV epidemic," Walker said, adding, "There is a reasonable chance we will come up with something very important with this" (Globe and Mail, 8/17). He also said that while researchers are "excited about the possibilities," they "realize this might not lead to any breakthroughs" (Wall Street Journal, 8/17). Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases, on Wednesday said that it is too early for optimism but that the research could be promising. "I believe we should get out and study elite controllers, but we should be conservative in what we expect from this research," Fauci said, adding, "This is still a very problematic and enigmatic virus." The study was funded by a $2.5 million grant from the Mark and Lisa Schwartz Foundation (San Francisco Chronicle, 8/17).

Los Angeles Times Examines HIV-Positive "Controllers," Studies, Research Difficulties

July 6, 2006

The Los Angeles Times on Thursday examined HIV-positive "elite controllers" -- people whose immune systems for long periods of time have been able to keep HIV at undetectable levels without using antiretroviral drugs -- and "viremic controllers" -- HIV-positive people whose immune systems have kept the virus at barely detectable levels without using antiretrovirals -- and the difficulties of conducting research on such individuals. According to the Times, elite controllers are "extremely rare" and account for about one-third of 1%, or about 2,000, known HIV-positive people. Researchers believe it is "unlikely" that elite or viremic controllers can infect others with HIV, the Times reports. "I would say we still don't have the faintest idea why these people are doing as well as they are," Bruce Walker, director of Partners AIDS Research Center at Massachusetts General Hospital, said, adding, "Achieving the state that these guys have reached in their bodies -- if we could do that through some intervention, we would solve the AIDS epidemic."

Studies To learn why and how HIV remains at extremely low levels in controllers, researchers are studying both the innate immune system -- which provides a "general response" that immediately activates to "dismantle" incoming pathogens -- and the adaptive immune system -- which is a longer-term response that relies heavily on antibodies, including CD4+ T-cells -- according to the Times. Steven Deeks of the University of California-San Francisco and colleagues assembled a group of 50 elite controllers to analyze their adaptive immune systems and found that half of the controllers fought the virus through a "powerful response by T-cells," and the other half showed no T-cell response, the Times reports. "The 25 people in our cohort who have no T-cell reaction can provide insight into whole new ways of thinking," Deeks said, adding, "There are 25 guys who have no reason for controlling the virus." In a related study, Jay Levy of the University of California-San Francisco and colleagues focused on the infection-fighting tools of the innate immune system to identify antiviral proteins found in controllers, the Times reports. Controllers show that the immune system is able to contain HIV naturally, Levy said, adding, "This has been a long time coming, but in my opinion we can look forward to long-term survival without toxic drugs."

Research Difficulties Some researchers believe that controllers are able to contain HIV because the strain of the virus with which they are infected is defective, the Times reports. To study every controller for defective HIV would be "prohibitively expensive," Deeks said, adding that if such a study were initiated, the idea would be "to see if the virus is there and if it is defective, because, in theory, that virus will give good insights into making an effective vaccine." Another problem with studying controllers is that there are not enough of them to assemble local cohorts large enough to study effectively, the Times reports. Walker and his research team at Massachusetts General Hospital have assembled 76 elite controllers and 100 viremic controllers from across the country to participate in a new study. "Basically, we want to recruit every single one of these people in the [U.S.]," Walker said, adding, "We have to have a large enough sample to begin to see patterns in this population" (Ricci, Los Angeles Times, 7/6).

elite controllers Jul 12, 2007

Hello Dr Bob you are one funny guy.. Re elite controllers . assuming low or undetectable viral load does antibody test always present positive? Thank you for your response and all the best.

Response from Dr. Frascino

Hi,

Would that be "funny" as in funny Ha! Ha! or "funny" as in severely twisted individual??? Oh, all of the above!?! I see. Well OK then, I'll answer your question.

Even with undetectable viral loads, elite controllers would always test HIV-antibody positive. (If they didn't, we'd never know they were HIV infected or they were controlling anything, elite or not.)

Dr. Bob



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