Activists launch new survey, ask people with HIV to take 10 minutes to help speed HIV cure research

Please forward to others who would like to participate

Find the survey here.

San Francisco, CA-A coalition of HIV advocacy groups are calling on all people with HIV to take 10 minutes to complete a survey they hope will help speed the pace of HIV cure research.

At issue are the kinds of risks that the U.S. Food and Drug Administration (FDA) will allow in early phase clinical studies of promising treatments to either eradicate HIV from the body or to help the immune system better control the virus without the need for antiretroviral drugs.

"There are complex considerations in the FDA's regulation of early studies that might carry certain health risks, especially if those studies are designed more to move the science forward than to achieve an immediate cure in the individual," said David Evans, director of research advocacy for Project Inform in San Francisco.

"We believe that soliciting the opinions of people with HIV regarding the potential risks involved will help inform discussions regarding the design of these trials, and shed light on the extent to which individuals are willing to assume some risk even if the study would only help people further down the road," Evans continued.

Evans, in partnership with Nelson Vergel, director of the Program for Wellness in Houston, and Richard Jefferys from the Treatment Action Group in New York City, devised the survey to help measure the willingness of people with HIV to participate in research for more altruistic reasons and to gauge the factors that are most strongly associated with a persons willingness.

The activists are hoping that the results of the survey may lead to more openness toward community input on the part of the branch of the FDA that will be responsible for reviewing many cure-oriented treatments, called the Center for Biologics and Evaluation Research (CBER).

"Several researchers are designing studies right now that will soon ask people to take some risks to learn more about new approaches to cure HIV. It is important for the HIV community to let them and the FDA know what it is willing to do to advance a cure of an illness that kills more than 2 million people per year", said Vergel.

Vergel and his colleagues are hoping that people with HIV and their service providers will spread word widely about the survey. The larger the number of people who take it, and the greater the diversity of the survey-takers, the more legitimacy the survey results will have. The group intends to make the results of the survey public before the launch of the 2012 International AIDS Conference that will take place in July in Washington, DC.

Survey.

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From: "News at The Body" <update@news.thebody.com>

Date: 06 Dec 2011 18:06:21 -0500

To: <nelsonvergel@yahoo.com>

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Subject: Hot Topics at The Body's "Ask the Experts" Forums

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December 6, 2011 Visit the Forums "Hot Topics" Library Change/Update Subscription
Living With HIV/AIDS Body Shape Changes & HIV/AIDS HIV/AIDS Treatment Other Health Issues & HIV/AIDS Understanding HIV/AIDS Labs HIV Transmission LIVING WITH HIV/AIDS  Post-Traumatic Stress and Long-Term HIV Survival: How Do We Cope? I'm a survivor of childhood sexual abuse as well as a longtime HIVer. Every single gay man I knew or had known up until the 1990s has died. I spent nearly 20 years expecting death any week, attending three to four "memorial services" on weekends, and never once having family or straight friends ask how I was handling it or what they could do to help. I recently realized that I suffer from post-traumatic stress disorder. My doctor says I could live into my 80s or more, but under these conditions I'm not sure I wish to. I know "raw" sexual encounters with other poz men aren't the answer, but they're the only pleasure that distracts me from memories of that time. Do you have any suggestions? David Fawcett, Ph.D., L.C.S.W., responds in the "Mental Health and HIV" forum  Will My Testicles Shrink While I'm on Testosterone? I'm in treatment with Arimidex (anastrozole) and a testosterone gel for secondary hypogonadism. Can I expect to keep my testicular volume on this course of treatment? Nelson Vergel responds in the "Nutrition and Exercise" forum BODY SHAPE CHANGES & HIV/AIDS  Why Is Radiesse Not Sticking Around? I used to get Radiesse (calcium hydroxylapatite, Radiance) treatments three or four times a year, but I've gone seven times this year. I was treated with Radiesse in August, but by the first of October I had a hollow area under one cheekbone and am starting to develop one under the other. I understand the product's lifespan varies, but this seems extremely short lived, especially when I've had longer lasting results in the past. Does Radiesse simply stop working with time? I really like my doctor, but could she be using the wrong injection technique? Gerald Pierone, M.D., responds in the "Facial Wasting" forum Detail from: "Still Life With Orchids," 1999 Bradford Branch Visit the December 2011 Visual AIDS Web Gallery to view our latest collection of art by HIV-positive artists! This month's gallery, entitled "The Sword of Damocles," is curated by Patrick Webb. HIV/AIDS TREATMENT  Can Archived Resistance Affect Treatment Outcome Before I Even Start Meds? What is "archived resistance"? I've heard it means that it's possible to have hidden HIV mutations that don't show up on resistance tests or have any effect until the person starts taking HIV meds. How is this possible? Does this mean you could think you're good to go on all regimens, or most of them, and find out that you actually have fewer regimens that will work due to these archived mutations? Joseph P. McGowan, M.D., F.A.C.P., responds in the "Choosing Your Meds" forum  Viral Load "Blip": Should I Be Preparing to Change Regimens? I've been taking Truvada (tenofovir/FTC) and Viramune (nevirapine) forever. My viral load recently went up to 174. If this turns out to be a signal of treatment failure, I'm curious about my options. I assume Emtriva (emtricitabine, FTC) is the probable culprit. I think I remember that AZT (Retrovir, zidovudine) and Emtriva have mutations that contradict each other. Would it make sense just to add AZT to my mix for a bit? Benjamin Young, M.D., Ph.D., responds in the "Choosing Your Meds" forum  Will a Garlic Tea Interact With My HIV Meds? Can I soak garlic in hot water and drink the tea for its potential cholesterol-lowering benefits? Will this concoction have any negative interaction with my HIV med regimen, Sustiva (efavirenz, Stocrin) and Truvada (tenofovir/FTC)? Keith Henry, M.D., responds in the "Managing Side Effects of HIV Treatment" forum OTHER HEALTH ISSUES & HIV/AIDS  What Can I Do to Manage Depression? I've been HIV positive for 22 years. My CD4 count is 487 and my viral load is undetectable. I've been depressed for quite a few years now. Could it be my HIV meds? I've taken quite a few HIV meds over the years, but none with the results that Atripla (efavirenz/tenofovir/FTC) seems to have produced. What can I do about depression when it threatens to take me over? Nelson Vergel responds in the "Nutrition and Exercise" forum  Can Tanning Beds Have an Effect on an HIVer's Immune System? I work with a 25-year-old HIV-positive gay man who's been taking Atripla (efavirenz/tenofovir/FTC) for 18 months. He's in total compliance with his meds, eats well, exercises and has the support of his family and friends. His T-cell count remained steady in the upper 200s to lower 300s during his first year on meds, but it's recently dropped significantly. Besides being under a lot of stress, the only other potential cause of this drop that we can think of is that he's a frequent user of tanning beds. Could tanning impact his T-cell recovery? David Fawcett, Ph.D., L.C.S.W., responds in the "Mental Health and HIV" forum More Questions About Other Health Issues & HIV/AIDS: Which HIV Meds Have Been Known to Cause Kidney Stones? What Kind of Specialist Treats Shingles? Can I Live With Shame, Guilt and HIV? (A recent post from the "I Just Tested Positive" board) Just in time for the holiday season I was diagnosed HIV+ and after two grueling weeks, I got my CD4 cell count and I am officially labeled as having AIDS. My count is 48. Sucks, right? Yeah. But that is not the whole of the story. In my quest for seeking some random sexual experience I may have infected my wife unknowingly. Molested as a child, raped as a teenager, I thought getting married would make it better. Cold marriage, very little sex from the beginning. ... I began to wander and now I am HIV+. ... She's getting tested now ... I used protection. I thought I did everything right. ... I pray that our complete lack of sex has protected her. ... She is planning on a divorce, keeping the kids and in her words, "I do not give a fuck what you do." And I deserve that. I am guilty. So now the question remains: Do I start taking meds and live? Or curl up in a homeless shelter and die? ... Would it not be easier to let this take me than explain everything to my family, friends and workers? ... I'm so confused and frightened, and a lot of other adjectives. Does anyone have ideas or thoughts? -- Cruhaven Click here to join this discussion, or to start your own! To do this, you'll need to register with TheBody.com's bulletin boards if you're a new user. Registration is quick and anonymous (all you need is an e-mail address) -- click here to get started! UNDERSTANDING HIV/AIDS LABS  How Long Does It Take for HIV to Appear in the Blood? I became HIV positive in 2010. I'm in good health and my CD4 count and viral load are under control. Around 20 days after I was infected I had unprotected sex. Fortunately the person has since tested HIV negative but it makes me wonder: How many days does it take for the virus to reach a person's blood? Mark Holodniy, M.D., F.A.C.P., C.I.C., responds in the "Understanding Your Labs" forum HIV TRANSMISSION  My Neck Got Cut in a Barbershop: Am I at Risk? I've been traveling and have gone several times to a barber near my hotel for a shave. My neck got cut at least two times on different occasions. Is there a chance of infection with HIV this way? David Fawcett, Ph.D., L.C.S.W., responds in the "Mental Health and HIV" forum  Can HIV Be Transmitted by a Woman During Sex With Another Woman? What are the chances of HIV infection occurring during oral sex between two women? Richard Cordova responds in the "Safe Sex and HIV Prevention" forum Worried Your Spam Filter Might Trash Our Mailings? The Body's e-mail updates are especially prone to being caught up in spam filters, since our newsletters tend to refer frequently to sex, drugs, the human anatomy and so forth. To make sure you never miss one of our mailings because anti-spam software labeled it as junk mail, add update@news.thebody.com to your address book, talk to the person who manages your e-mail security or check your anti-spam program's instructions for more information. About This E-mail This e-mail update has been sent to nelsonvergel@yahoo.com. Want to change your subscription? Click here or send us a message at updates@thebody.com. Missed an update? Our archive of past updates will keep you in the loop. Have any other questions or comments, and don't want to send an e-mail? Feel free to snail-mail us at: The Body's E-Mail Updates The HealthCentral Network, Inc. 250 West 57th Street New York, NY 10107	Advertisement  Count HIV+ Women In! 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HIV Expert Offers Tips for Better Health

Tuesday, 29 November 2011 11:49Written by Denise Royal

Nelson Vergel is the picture of health. Looking at him, you would never know that he’s been HIV positive for more than 25 years.  His chemical engineering degree and love of science led him to become a leading treatment advocate for people with HIV.

Vergel recently held a free seminar at the Pride Center at Equality Park where he discussed advances in HIV medications and treatments.

The first thing you notice about the Venezuela native is how buff he is.  Once he starts talking about living with HIV, you see that he’s on a mission to help people feel as good as he looks.  Vergel is hopeful about the treatment breakthroughs.

“I believe that some sort of combination approach will be used to cure us in 10-15 years.  We already have a case of one cured HIV patient (The Berlin patient).  But his cure was extreme and very risky.  So researchers are looking for ways to cure people in a simpler way,” he said.

Vergel is the author of Testosterone: A Man's Guide and co-author of the book Built to Survive; the founder of the nonprofit organizations Body Positive Wellness Clinic and Program for Wellness Restoration; the Nutrition and Exercise forum expert at TheBody.com.  He is also an international speaker on HIV treatments and side effect management. Those seminars are frank and informative.

Testosterone: A Man’s Guide discusses the symptoms, proper diagnosis, and treatment options, along with practical “how-to” information created by an advocate and patient for 20 years regarding testosterone therapy. Besides researching data on different options, Vergel has tried most of the products discussed in the book and provides practical tips on each one.

1- Do not be shy about telling your doctor if you have symptoms of low testosterone: low sex drive, fatigue, lack of focus/motivation.  If you have those symptoms, ask your doctor to get your blood levels of total and free testosterone measured.

2- There are over 5 options to treat testosterone deficiency.  Educate yourself about them (pros and cons) since no single option is best. Talk to your doctor about each.

3- If you start testosterone replacement therapy, you need to remind your doctor to retest your testosterone after the first month to see if you need to readjust the dosage to attain healthy testosterone blood levels of 500-1000 nanograms per deciliter.

Speaking of doctors, Vergel says many HIV patients in South Florida have an advantage – in terms of their physicians.

“Progressive doctors, in my opinion, do not only treat the virus, but also educate themselves about side effect management and complementary therapies. Fort Lauderdale and Miami have several of those doctors. Several cities do not,” he says.

Many people don’t have regular access to doctors or credible medical information.  Vergel is here to help.  At www.the body.com, he answers questions along with other experts – making it the largest HIV information site. It has weekly newsletters by subscription. Vergel’s nonprofit site (Program for Wellness Restoration) iswww.powerusa.org.  His online discussion group can be found at http://health.groups.yahoo.com/group/PozHealth/.

Denise Royal is an award-winning journalist. She’s a self-described “news junkie” she loves to write about current events and emerging trends. She’s also President of the multimedia content management firm Royal Treatment Media.

PoWeR asks for your support and end of year tax deductible donation

Program for Wellness Restoration (PoWeR,  http://powerusa.org/  ) is going through a tough financial time now that most industry educational grants have been eliminated.  We ask you to think about us when conmsidering organizations to make tax deductible donations before the end of the year.

In 2011, PoWeR has been able to accomplish the following with a very small budget :

- Provided 26 lectures on health to HIV positive people around the United States

- Published 78 blog articles  (http://survivinghiv.blogspot.com/ )

- Coordinated an upcoming expanded access program using two investigational drugs for people with HIV who have run out of treatment options. (http://bit.ly/tWkdk4  and http://bit.ly/s98yHL )

- Moderated http://health.groups.yahoo.com/group/PozHealth/ , a 9 year old listeserve with close to 4000 members from all over the world

- Produced a video to raise awareness on the challenges surrounding finding a practical cure for HIV (http://www.youtube.com/watch?v=Sj-dFQ6Yi7k )

- Provided technical advise to 4 other non profits ( Red Hispana, The Houston Buyers Club, The Positive Project, and Live Consortium)

- Answer questions  weekly at thebody.com ( http://bit.ly/twag7J )

- Created a petition to improve Medicare coverage of facial wasting therapies (http://bit.ly/rR2G0N )

- Created a resource list : http://powerusa.org/resources.html

If you or someone you know has been helped by our work and want to see us continue it, please do not hesitate to make a contribution by using this link:http://powerusa.org/donate.html or by sending a check to:

Program for Wellness Restoration

P.O. Box 667223

Houston, TX  77266

Thank you in advance for ensuring that our mission continues in 2012.

In health,

Nelson Vergel

Founding Director

Fw: Hot Topics at The Body's "Ask the Experts" Forums

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From: "News at The Body" <update@news.thebody.com>

Date: 15 Nov 2011 18:30:47 -0500

To: <nelsonvergel@yahoo.com>

ReplyTo: "News at The Body" <update@news.thebody.com>

Subject: Hot Topics at The Body's "Ask the Experts" Forums

If you have trouble reading this e-mail, you can see the online version at: www.thebody.com/topics.html

November 15, 2011 Visit the Forums "Hot Topics" Library Change/Update Subscription
Living With HIV/AIDS Body Shape Change & HIV/AIDS HIV/AIDS Treatment Other Health Issues & HIV/AIDS Understanding HIV/AIDS Labs HIV Transmission LIVING WITH HIV/AIDS  How Can We Support the Cure -- and the Man Who Was Cured? If I want to send money to the best activist group working on cure research advocacy, who should I send it to? Also, I've heard that "Berlin patient" Timothy Brown isn't doing well financially. We shouldn't allow our only living cured person to be neglected by our community. Where can we learn more about Timothy Brown, and lend him some support? Nelson Vergel responds in the "Nutrition and Exercise" forum  Doing Well on Meds: Do My Partner and I Still Need to Use Condoms? My partner and I are on HIV meds (different regimens) and we both respond very well to them. Is there really a risk that one of us will acquire or develop a drug-resistant strain of the virus and pass it on to the other? Richard Cordova responds in the "Safe Sex and HIV Prevention" forum BODY SHAPE CHANGES & HIV/AIDS  Can I Inject Egrifta Less Frequently Than Once a Day? I've been taking Egrifta (tesamorelin) for a year to reduce belly fat. Now that it's been a year, would it be all right to lower my dosage to less than every day? Doing so would save money as well as injection pain. Do you know what would happen if I only took it one to two times per week? Nelson Vergel responds in the "Nutrition and Exercise" forum Detail from: "Soap Suds," 1980 Jimmy DeSana Visit the November 2011 Visual AIDS Web Gallery to view our latest collection of art by HIV-positive artists! This month's gallery, entitled "i am anyone," is curated by Anthony Allen. HIV/AIDS TREATMENT  How Do My 2 Regimen Options Compare to One Another? According to my doctor, I have two options regarding which HIV med regimen to take next: Combivir (AZT/3TC) and Kaletra (lopinavir/ritonavir) or Isentress (raltegravir) and Truvada (tenofovir/FTC). Which would you recommend, and why? Benjamin Young, M.D., Ph.D., responds in the "Choosing Your Meds" forum  Stopped Taking HIV Meds and Feeling Great: Why Should I Start Again? I've been HIV positive for 15 years. Two years after being diagnosed I started taking Crixivan (indinavir). Since then I've tried Atripla (efavirenz/tenofovir/FTC), then Lexiva (fosamprenavir, Telzir), Norvir (ritonavir) and Truvada (tenofovir/FTC). For years I dealt with belly fat accumulation and a number of other terrible side effects, in addition to being severely clinically depressed. Two years ago I made a decision to stop taking my meds. I feel so much better and more alive! What are the potential consequences of my decision? Do you have any other feedback? Nelson Vergel responds in the "Nutrition and Exercise" forum  Does My New Poo Schedule Mean My Meds Aren't Being Absorbed? I've been taking Norvir (ritonavir), Prezista (darunavir) and Truvada (tenofovir/FTC) for six months; it's restored my CD4 count to a decent level, and my viral load is undetectable. In the past month I've noticed a change in my digestive transit. I used to have one bowel movement a day, in the morning (I take my pills with dinner, around 8 p.m.), but now I go about two hours after I take the pills. Is this enough time for the pills to digest? Will going to the bathroom so soon after taking them mean the level of medication in my body will be lower? Keith Henry, M.D., responds in the "Managing Side Effects of HIV Treatment" forum OTHER HEALTH ISSUES & HIV/AIDS  What Do You Think of Testosterone Replacement Therapy? I'm a 47-year-old man, 14 years poz and going strong! However, I have slowly watched my testosterone level drop from the mid-normal range to its current low, out-of-normal range. I have an incredibly hard time getting an erection and even when I do and can ejaculate, it's hardly stiff. At my age I'm not ready to give up on sex. I'm about to go see an endocrinologist about testosterone replacement therapy. What are your thoughts about it? What are the risks, and what results have you heard reported? David Fawcett, Ph.D., L.C.S.W., responds in the "Mental Health and HIV" forum  Can HIV-Positive Couples Have HIV-Negative Babies? We're an HIV-positive couple and we've both been on HIV treatment for 10 years. Can we produce a child who's HIV negative? What are some important things to remember should the female partner get pregnant? Keith Henry, M.D., responds in the "Managing Side Effects of HIV Treatment" forum Paying for HIV Meds: When Our Time Comes, What Are the Options? (A recent post from the "Treatment & Side Effects" board) We are a newly diagnosed couple waiting for all of our bloodwork to come back. We know I will likely have ADAP assistance in paying for meds, but my partner (a teacher whose insurance will not cover any HIV meds) will have no help. He makes "too much." What are the options -- ALL OF THEM? Seriously. What do any of you have to share? Does anyone have suggestions or stories? Does he quit his job? Do we move? I know we may not even need to start meds just yet, but I need to know what help there is out there. If I know nothing my mind goes to a place where I'm scared we're going to be homeless and have no meds. -- HIVhilarity11 Click here to join this discussion, or to start your own! To do this, you'll need to register with TheBody.com's bulletin boards if you're a new user. Registration is quick and anonymous (all you need is an e-mail address) -- click here to get started! UNDERSTANDING HIV/AIDS LABS  Viral Load Stays "a Little Bit Detectable": Should I Get a Resistance Test? My viral load has been about 100, and intermittently undetectable (but not consistently), since I started taking Atripla (efavirenz/tenofovir/FTC) more than two years ago. My last labs showed my viral load went up to 584, though I did have a cold at the time. My doctor seemed unconcerned and said we'd see what the next labs show in three months. Does the increased viral load indicate the beginning of treatment failure? What are your thoughts on all this? Mark Holodniy, M.D., F.A.C.P., C.I.C., responds in the "Understanding Your Labs" forum HIV TRANSMISSION  Does Having HPV Put Me at Greater Risk for HIV? I had receptive oral sex 36 days ago. I have the human papillomavirus (HPV). Do the effects of HPV increase my chance of getting HIV from my recent oral encounter? Richard Cordova responds in the "Safe Sex and HIV Prevention" forum Worried Your Spam Filter Might Trash Our Mailings? The Body's e-mail updates are especially prone to being caught up in spam filters, since our newsletters tend to refer frequently to sex, drugs, the human anatomy and so forth. To make sure you never miss one of our mailings because anti-spam software labeled it as junk mail, add update@news.thebody.com to your address book, talk to the person who manages your e-mail security or check your anti-spam program's instructions for more information. About This E-mail This e-mail update has been sent to nelsonvergel@yahoo.com. Want to change your subscription? Click here or send us a message at updates@thebody.com. Missed an update? Our archive of past updates will keep you in the loop. Have any other questions or comments, and don't want to send an e-mail? Feel free to snail-mail us at: The Body's E-Mail Updates The HealthCentral Network, Inc. 250 West 57th Street New York, NY 10107	Advertisement  Nov. 16 Webinar: 2012 -- Revolution or Ruin?  Congress Must Protect Medicare, Medicaid, Ryan White and Critical Health Services  POZ Life Weekend Seminar in Las Vegas  2011 Virtual Conference: Accessing and Understanding HIV/AIDS Patient Assistance Programs  Sign On: Treatment Prevents Transmission -- Obama, Stand Up for Treatment Expansion Worldwide  Action Alert: Tell Gov. Cuomo to Consider Transgender Medicaid Proposal  Take Action! PWN Stands With Planned Parenthood  Tell Your Representative to Join the Congressional AIDS Caucus