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September 20, 2006

In This Update:
  • Living With HIV
  • Complications of HIV & HIV Meds
  • One Week Away: Live Fatigue/Anemia
        Chat With Dr. Bob Frascino
  • HIV Treatment
  • HIV Policy in the U.S.
  • HIV Transmission & Prevention
  • HIV Outside the U.S.

    Podcast: How One Night of Unprotected Sex Led to a Life Fighting HIV
    When he was 22 years old, Ugandan Henry Luyombya was shocked to find his HIV test come back positive. He hadn't been worried about his results because he consistently used condoms -- with the exception of one drunken night. In fact, he had only gotten an HIV test to set an example for some friends, who he was encouraging to seek counseling and HIV testing. Four years later, in this exclusive interview with The Body, Henry recounts his initial struggle with his HIV diagnosis: "It was a difficult situation. I remember -- I almost broke down. I cried inside me. I didn't tell anyone for many weeks. ... [T]hen I decided to use my story to reach out to my fellow peers, to address issues of prevention and also to advocate for treatment and care for HIV." Download the podcast or read the transcript of our talk with Henry, as he shares his experiences living with the virus and explains his determination to increase youth involvement in the global fight against HIV.

    For many more podcasts of interviews with HIVers, advocates, researchers and more, be sure to visit The Body's Podcast Central at AIDS 2006.

    Fifty Years Old and HIV Positive -- And Ready for Another 50 Years
    When AIDS activist Matt Sharp tested positive at the age of 32, he didn't think he'd make it to 40, much less 50. Yet he recently found himself celebrating the half-century mark and taking stock of his life. In this thoughtful essay, Sharp mourns the friends he's lost to AIDS and ponders the meaning of having lived 18 years with the virus. "Surviving with AIDS to 50 and beyond will take more guts, more fortitude and more commitment," he writes. "Turning 50 hasn't detracted from surviving AIDS, it just created a new opportunity to reflect, stay strong and gain steam for the next 50 years."



    BobbieAs a model, Bobbie's looks weren't just her livelihood, they were her very identity. Now HIV was taking that away, she felt. Her body shape was changing as a result of her HIV meds; Bobbie began to feel less and less beautiful, and her sense of self was slipping away. Her HIV-negative boyfriend stood steadfastly by her, but the real question was: Could she find the strength to stand up for herself? Find out what happens by watching the newly released third episode of Live With It, the Web's first animated series about living with HIV.

    Live With It follows the stories of a diverse group of HIVers who have found their way to the same support session. Visit the Live With It site to read more about the fictional support group members, visit their blogs and MySpace pages, sign up for updates, join an online discussion and much more!

    Live With It is created and maintained by Incendia Health Studios, and is sponsored in part by Gilead Sciences, Inc.



    Noble Past, Unknown Future for Expanded Access Programs
    In the dark days before combination HIV therapy, HIV activists started a revolution in drug development that has saved hundreds, if not thousands, of lives. Expanded access programs (EAPs) now make it possible for an HIVer with no viable treatment options to receive free HIV medications in development. However, recent EAPs for drugs such as tipranavir (Aptivus) and TMC114 (darunavir, Prezista) have attracted relatively few participants. Why? According to this analysis by Bob Huff of Gay Men's Health Crisis, the reasons are varied and complex.

    If you're resistant to many HIV meds and need a new option, you may be interested in participating in a new expanded access program: Merck & Co., Inc., announced last month that its experimental integrase inhibitor, MK-0518, will be made available through an expanded access program. The program officially launched on Sept. 14. Click here to learn more, or call 1-877-EARMRK1 for more information.

    Expanded Access Programs Pose Major Challenges for Health Care Providers
    What stops a health care provider from participating in an expanded access program (EAP)? EAPs offer potentially lifesaving medications in development to HIVers who are running dangerously low on treatment options. However, the medical sites that manage EAPs often struggle to stay afloat in a sea of paperwork headaches, lack of funding and staff shortages. In this opinion piece, Harry C.S. Wingfield argues that drug companies should cover the costs of EAP participation -- because if they don't, he warns, more and more sites will drop out of the programs, leaving fewer and fewer HIVers with access to developing drugs.

    HIV Medication Errors Occur 25% of the Time at a Baltimore Hospital
    Worried that your HIV treatment regimen may be screwed up if you're admitted to the hospital? A new study suggests that there's reason to be concerned: Medication errors took place among more than 25 percent of all HIV-positive people on treatment who were admitted to the Johns Hopkins Bayview Medical Center in Baltimore, Md., over a one-year period. The most common errors concerned the amount or frequency of a drug's dosage, interactions with non-HIV medications, and unexplained delays of more than 24 hours in receiving meds. The best thing to do: Bring a printed list of all your meds and their doses, and show it to everyone at the hospital. Bring someone with you to the hospital to ensure that the list you have is looked at and adhered to.



    Smoking Marijuana May Improve Success of Hepatitis C Treatment, Study Suggests
    People who smoke marijuana regularly while taking hepatitis C medications are much more likely to see their hep C treatment work, according to the results of a study in California involving 71 recovering substance users with hepatitis C. The researchers weren't sure whether marijuana itself actually improved the body's response to treatment. It did appear, however, that marijuana may have helped offset some of the potentially difficult side effects of hep C meds, which include depression and flulike symptoms. As a result, people who used marijuana regularly were much more likely to complete their full course of hep C meds than people who did not. (Web highlight from The Washington Post)

    To read the abstract of this study, which appears in the October 2006 issue of the European Journal of Gastroenterology & Hepatology, click here.

    Banishing Chipmunk Cheeks and Bullfrog Neck
    We've heard all about the facial fat loss that some HIVers experience because of HIV medication side effects. But some HIV-positive people can develop facial fat gain, especially in the cheeks or the neck. Thankfully, medical procedures, diet, and exercise regimens may be able to reverse these effects. Positively Aware takes a look at some of the options available to people with body fat changes, such as radiation therapy for the swollen glands that cause "chipmunk cheeks," plastic surgery for people with fat buildup in their neck or fat loss in their face, and the power of diet and exercise to help reduce fat accumulation in the belly.

    Lung Cancer Diagnosed Later Among HIV-Positive People, Study Finds
    Lung cancer may be more aggressive in HIV-positive people than HIV-negative people, and doctors seem to take longer to diagnose the disease in HIVers, according to results from a large, long-term study by researchers in Baltimore, Md. Although the researchers found no sign that lung cancer is actually more common among HIVers, they did note that HIVers appear to get lung cancer at a younger age than HIV-negative people, and that HIVers with lung cancer also appear to smoke more heavily than their HIV-negative counterparts. They also found that people with HIV tend to be diagnosed at a later stage of lung cancer than people without HIV, suggesting that doctors aren't being aggressive enough about testing for lung cancer when HIVers show symptoms. (Web highlight from



    The Date: Wednesday, September 27, 2006

    The Time: 6 p.m. Eastern Time/3 p.m. Pacific Time

    The Chat: Fatigue is one of the most common health problems that people with HIV experience. It can have any number of causes, including HIV medications, depression , anemia and HIV itself. The good news is that, whatever the cause, there are several different ways to prevent, diagnose and treat fatigue in HIV-positive people. Dr. Bob Frascino, one of The Body's most popular online experts and an HIV-positive person himself, will answer questions from HIVers who are dealing with, or worried about, fatigue, anemia and related health issues.

    To sign up for an e-mail reminder about this chat, or to presubmit a question you'd like Dr. Bob to answer, click here!


    New Jersey AIDS Advocates Battle Proposed Funding Cuts
    AIDS advocates in the United States are lobbying Congress to retain New Jersey's portion of Ryan White funding, which goes toward services for low-income HIVers. Providing services to people with HIV is more than handing out medications: Non-medical services -- such as transportation and counseling -- are essential for successful programs, advocates say. But services like these would likely be the first to go if the act is reauthorized with the proposed cuts. Local advocates from Bergen and Passaic counties predict that proposed changes to the Ryan White CARE Act would reduce their funding by 40 percent, which could result in the reduction or discontinuation of non-medical services at 22 agencies in the two counties.

    Funding Crisis Approaches for HIV Health Care Providers
    Medical care for people with HIV is growing ever more expensive in the United States (as is all health care). But when you're on Medicare and you go to a doctor for HIV treatment, guess how much money the doctor gets back, on average, from the federal government? The answer: $359. And that's for an entire year of treating someone, even though treatment costs thousands and thousands of dollars per person. The $359 "covers physicians, nurses, rent, utilities, social workers -- you name it. How are we [providers] supposed to survive?" says Dr. Michael Saag, who has been treating people with HIV for more than 20 years. Saag has been in Washington, D.C., lobbying for changes to the Ryan White CARE Act that will provide more money to HIV health care providers. He's calling for "a dramatic increase in funding to increase clinic capacity. ... Without qualified HIV care providers and clinics, HIV drugs mean nothing." (Web highlight from the Bay Area Reporter)

    White House "AIDS Czar" Position Still Unfilled
    If you're looking for proof that the Bush Administration is ambivalent about dealing with HIV in the United States, you only have to check out the situation with the White House "AIDS Czar." It's been seven months since Carol Thompson left her post as director of the White House Office of National AIDS Policy -- and there's still no replacement. The inaction has renewed public speculation about President Bush's commitment to the domestic fight against AIDS, and reminds many of his initial desire, in 2001, to close the AIDS office completely. AIDS activists are warning that the vacant post, in combination with the bogged-down Ryan White CARE Act reauthorization process, could lead to more trouble than the current administration is capable of handling. (Web highlight from Washington Blade)



    Sex Is the "Whole Agenda" at New York's Gay Bathhouses
    You might have thought that gay bathhouses were a thing of the past in the United States, shut down after the arrival of HIV. Most of them were -- but some remain, including two in New York City. As the precursor to the gay bars and clubs that now dot the map, gay bathhouses used to be an accepted social gathering place. Today, however, they are little more than a sexual meat market: Bill Stackhouse, director of the Institute for Gay Men's Health at Gay Men's Health Crisis, says that before the AIDS epidemic, sex at bathhouses "was part of the agenda instead of the whole agenda." New York State law prohibits the selling of sex or operating a business for the purpose of sex; however, inspectors say they are legally barred from looking inside any of the occupied privately rented rooms, even during official investigations.

    HIV Risk May Be Higher for New York City Men on the Down Low, Survey Finds
    How many "straight" men have sex with men? According to a telephone survey of more than 4,000 New York City men, almost 10 percent who identified themselves as straight also said they'd had sex with at least one man in the last year -- and 70 percent of those men were married. Compared to gay men in the survey, self-identified straight men having sex with men were more likely to be a racial or ethnic minority, more likely to practice unprotected sex and less likely to have been tested for HIV.

    To read the full study, which was published in the Sept. 19 issue of the Annals of Internal Medicine, click here.

    Too Many Youths Depend on a Visual HIV Test
    It's called a "visual AIDS test," and it's what some young people do before deciding whether they need to use protection during sex. For instance, a person might think, "I can look in his eyes and tell," or, "I know he's OK, plus he told me he's negative." Dr. Donna Futterman, director of the Adolescent AIDS Program for the Albert Einstein College of Medicine in the Bronx, has heard these lines too often. She says this "visual AIDS test" is done even by physicians at her own clinic who resist testing young patients for HIV, even though they are already being treated for other sexually transmitted diseases. In response, Futterman now gives medical staff at the hospital a pocket guide to testing youth for HIV. Young people are also offered advice on "reality-based prevention, which includes teaching young people about condom use and communication in addition to abstaining from sex.



    AIDS Is Biggest Killer of New Mothers in South Africa
    The South African Health Department announced that HIV is the biggest single killer of the nation's new mothers. The announcement opens yet another chapter in the tragic story of South Africa's AIDS crisis. The health department released a study of 3,406 maternal deaths between 2002 and 2004, and found that HIV was responsible for 20 percent of the deaths. The survey also noted that the country's plan to provide free HIV medications only began at the end of the study period, and may eventually contribute to a decline in maternal deaths due to HIV. (Web highlight from The Washington Post)

    Britain Struggles Over Whether Prosecuting HIVers for Failing to Disclose Before Sex
    Can you be arrested and convicted for having unprotected sex with an HIV-negative person if you're HIV positive? The answer depends on where you live. In the United Kingdom, HIV-positive people who fail to disclose before sex and end up passing the virus on can be convicted under a 100-year-old law forbidding "reckless grievous bodily harm." In the last few years there have been a number of high-profile convictions in Britain, with people getting sentences ranging from a small fine to imprisonment. But the law is now tangled in a web of legal, medical and ethical quandaries currently under discussion. The big question is whether the law is ultimately bad or good for society. Obviously, prosecutors and AIDS advocates have very different opinions; read this article to learn more about them. (Web highlight from BBC News)

    Also Worth Noting

    Exclusive Images From
    AIDS 2006

    Image from The Body's AIDS 2006 Photojournal
    Only a small percentage of HIV-positive people have the fortune of landscape designer Loreen Willenberg. She is what HIV researchers have termed an “elite controller”: Someone who has had HIV for many years, but has never had a detectable viral load. You can also read The Body's exclusive interview with Loreen by clicking here.
    The Body's exclusive AIDS 2006 Photojournal features dozens of images of the many people, protests and unique sights of the XVI International AIDS Conference. The photojournal is meant to give those who couldn't attend the conference a sense of what it was like to be there. From world leaders to HIVers in the developing world; from press conferences to protests; and from the conference center to downtown Toronto, we give you a glimpse of what it was like to attend the largest gathering on HIV in history.

    Connect With Others
    t The Body's Bulletin Boards

    Has Anyone Else Dealt With Buffalo Hump?
    (A recent post from the
    "Gay Men With HIV" board)

    "I have been successly treated with Trizivir for four years (since becoming HIV positive). All was well until, a few weeks ago, I noticed the dreaded hump starting to appear behind my neck. I would like to hear experiences from anyone going through this type of lipodystrophy ... like how yours progressed over time; anyone notice a slight hump that did not progressively get worse? Any testimonies of anything that helped (switiching from protease inhibitors to NRTIs, Serostim, liposuction, etc.)?"

    -- mike55

    Click here to join this discussion thread, or to start your own!

    Two Years Off Meds, And Still Doing Well
    (A recent post from the
    "Gay Men With HIV" board)

    "I was diagnosed at the age of 21 and went on medications right away as instructed by my first doctor. Several months later it was suggested to me by another doctor that I should go off the medications completely. ... I have been off for two years and I honestly feel completely normal. ... I am due for a doctor's visit where I'm sure I will find out that my CD4 is at 600 and my viral load is at 3,000 again. ... Any FRIENDLY, "non-bitchy" comments from anyone would be greatly appreciated. I don't have any poz friends nor any link to the poz world other than the Web sites out there."

    -- Anonymous

    Click here to join this discussion thread, or to start your own!

    Calling All Artists!
    Calling All Artists:
    Submit Your Postcard!
    Postcards From the Edge
    Visual AIDS is now accepting submissions for its ninth annual Postcards From the Edge benefit -- a charity event being held on Dec. 2-3 in New York City, at which the public will be able to purchase original, postcard-size artworks from artists around the country! Painting, drawing, photography, printmaking and mixed media are welcomed; proceeds go to Visual AIDS.

    The postmark deadline for submissions is Nov. 10. For more information on how to be a part of this unique event, click here!