August 27, 2009
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Also Worth Noting: In Memoriam: Edward M. Kennedy, 77

Sen. Edward M. Kennedy

In the early years of the HIV pandemic, few people would stand up for people living with HIV/AIDS. U.S. Sen. Edward M. Kennedy, who passed away this week, was one of those few. "Senator Kennedy's extraordinary and steadfast advocacy in the early days of the AIDS epidemic is unrivaled in the history of the U.S. Senate," writes amfAR's founding chairman Mathilde Krim in this moving tribute. "Without him, we would not have made the many early advances in research that were achieved together."
LIVING WITH HIV

Thomas DeLorenzo How I Dated an AIDS Denialist
For too long, Thomas DeLorenzo denied the seriousness of his illness. He took so much time acclimating himself to being HIV positive and getting treatment that he nearly put his life at risk. But he had little idea that, even in 2009, there were others whose denial ran so deep that even though they tested positive, they felt they never needed to see a doctor or get medications. But Thomas recently dated one of these people. Thomas eventually learned that the man had initially kept his status a secret because he didn't think HIV caused AIDS. "It will never, ever cease to amaze me how much ignorance runs rampant in this country," Thomas writes. (Blog entry from TheBody.com)


HIV TREATMENT & HEALTH ISSUES

 Conference Roundup: A Lively Discussion of IAS 2009 Headlines
We can look at study results till we're blue in the face, but what does all that research actually mean for the future of HIV treatment and prevention, not to mention the everyday lives of HIV-positive people? Join HIV/AIDS activists Robert Munk and Matt Sharp as they chat with TheBody.com's editorial director Bonnie Goldman about some of the big stories that came out of IAS 2009, a major HIV research conference that took place in South Africa last month. This overview is available as an online article and a podcast! (IAS 2009 coverage from The Body)

For much more coverage of IAS 2009, stop in at our conference coverage home page.


 Medicare Should Cover Bone Density Testing for Men With Low Testosterone, Endocrine Society Says
One of the most common yet undiagnosed problems in HIV-positive men is low testosterone, also called hypogonadism. Typical symptoms include low sex drive, fatigue, loss of muscle, depression and weight loss. Low testosterone has also been associated with bone loss, a growing problem in HIV-positive people. Despite this, Medicare doesn't cover bone density testing for men in the U.S. with low testosterone. The Endocrine Society wants that to change. "The lack of Medicare coverage for DXA scans in men with hypogonadism results in underdiagnosis and undertreatment of osteoporosis, resulting in significant morbidity, mortality and cost to society," said Robert Vigersky, M.D., president of The Endocrine Society. (Press release from The Endocrine Society)


Also Worth Noting: Online Survey: How Do You Rate Your Medical Care?
Take this new survey by HIV-positive scientist and clinician Dr. Rupert Whitaker and detail how you would rate your medical care. The survey is available in English, Spanish, French and German.
HIV IN THE NEWS

 U.S. State Department to Drop Automatic Ban on HIV-Positive Contract Workers
The American Civil Liberties Union (ACLU) has settled a lawsuit against a U.S. State Department contractor that was being sued for illegally firing an HIV-positive man. Details of the settlement are private, but the State Department agreed to change a policy that allowed for firings based on HIV status. This continues a welcome trend: Last year, the State Department agreed to stop excluding HIV-positive people from the Foreign Service. The U.S. Department of Justice has also issued new guidelines, which make it clear that HIV status falls under the protection of the Americans With Disabilities Act. (Press release from the ACLU)


 Religious Leaders Implored to Make Faith and HIV a More Comfortable Pair
More than 25 years into the HIV epidemic, many religious groups are still unwilling to address HIV/AIDS. "Their commitment level is quite low, particularly when compared to the size of their budget and the amount of work they do," said Donald Messer of the U.S.-based Center of Church and Global AIDS. He was speaking at the ninth International Congress on AIDS in Asia and the Pacific, which took place recently in Bali, Indonesia. At the conference, some called for religious leaders to finally take action to bring HIV to the forefront, instead of talking endlessly about the need for progress while doing little. (Article from the U.S. Centers for Disease Control and Prevention)


 HIV Group to California Porn Industry: Time to Get Serious About Condom Use
The silent spread of sexually transmitted diseases among its actors may be a dirty little secret of the pornography industry, but AIDS Healthcare Foundation says it's time for that to stop. The group has filed a legal complaint with California's health watchdog organization over the state porn industry's lack of condom use. Michelle Avanti, a former adult entertainment actress, supports the move. "My lower body hurt so badly and at times my private area felt like it was a blazing fire," she recalls. "I believe that if condoms had been allowed to be used in my own films, I would not have suffered so many physical ailments and infections." (Press release from AIDS Healthcare Foundation)


Also Worth Noting: Connect With Others
Have You Ever Stopped Taking HIV Meds Completely?
(A recent post from the "Treatment" board)

I'm a bit confused at the moment and have decisions to make. I started treatment in December last year following a weird illness. My doctors still have no idea what the cause was, but as I'd been positive for seven years I thought it might have been time to start, although my CD4 at the time was 1,300 and my viral load was 12,000. ...

I recently met with a very prominent doctor. ... He thought my illness last year was nothing to do with the HIV and that I'd probably be better stopping the meds and seeing if I continue to feel well. He said the regimen I'm on [Norvir, Prezista and Truvada] is OK to stop and start again. My question is, has anyone done this ... and did you ultimately have to start again?

-- Britboy100

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!

Recycle Meds

Your extra medications are needed by many people with HIV outside the U.S. Organizations such as Aid for AIDS collect extra meds for HIV and related illnesses, and ship them to people in South America and Africa who would die without them. In past years, Aid for AIDS has collected over $4.2 million worth of medications and helped over 5,000 people get into treatment.

If you have extra meds, please visit Aid for AIDS' medicine recycling page to find out how you can mail in or drop off your donations.
HIV & THE OBAMA ADMINISTRATION

 Obama's Top HIV/AIDS Official Visits U.S. HIV Organizations to Talk Health Reform
Change is coming to the fight against HIV in the U.S. -- we just have to be patient. That's the message that Jeff Crowley, the White House Director of AIDS Policy, tried to convey when he visited a handful of HIV/AIDS organizations in New York City this month. Crowley came under fire during his visit due to the perception of many in the HIV community that the Obama administration has done too little on the HIV front. But Crowley's visit itself, along with some recent additions to his staff, have given advocates reason to keep hope alive. (Article from Housing Works)

Crowley's visits to HIV/AIDS organizations aren't the only signs that the Obama administration is paying attention to the U.S. HIV community. The government has also launched a series of public discussions in cities across the country. The goal: to get people's ideas about the creation of a nationwide plan to prevent and treat HIV within the U.S.


 Helene Gayle Named Chair of Presidential Advisory Council on HIV/AIDS
One of the most experienced HIV/AIDS policy experts in the United States is slated become a top adviser to President Obama on HIV/AIDS issues. Helene Gayle, who is the former head of AIDS research at the U.S. Centers for Disease Control and Prevention and once ran HIV-fighting efforts at the Bill & Melinda Gates Foundation, has been named the chair of the Presidential Advisory Council on HIV/AIDS. The group was initially formed by Bill Clinton to provide policy recommendations to the president on how the U.S. government should fight HIV. (Article from kaisernetwork.org)


MAKING A DIFFERENCE

 Health Care Reform Heats Up: Three Simple Steps You Can Take to Impact HIV/AIDS Policy
The end of summer may be a slow time for the news cycle, but it's a busy time for HIV/AIDS policy. Right now, the U.S. Congress is considering an overhaul of public health care -- including Medicaid -- and it's also thinking about lifting the federal ban on syringe funding. Meanwhile, the Ryan White CARE Act expires in only six weeks, which doesn't leave much time to get it reauthorized. Get involved: You can use this list of links and petitions to make sure your representatives know where you stand on health care. (Action alert from Housing Works)


 Annie Lennox: Singing Out for HIV Awareness
Annie Lennox has won plenty of awards for her music: Grammys, BRIT Awards and even an Oscar. So when she decided to get involved with AIDS activism, using her music was a natural way to go about it. In 2007, Lennox recorded a powerful anthem called "Sing" with 23 other female musicians (including Madonna and Celine Dion) to give a voice to the millions of people living with HIV in South Africa. Lennox was inspired to get involved after seeing Nelson Mandela speak about HIV/AIDS; last week, she unveiled a memorial to Mandela in Edinburgh, Scotland. (Article from TheBody.com)





Activist Central

 Action Alert: Easy Steps to Impact U.S. HIV/AIDS Policy!


 Call Assembly Speaker Silver: Stop the HASA Rent Crisis -- New Yorkers With HIV/AIDS Need Affordable Housing!


 Tell Senators Health Care Reform Must Include Medicaid Parity for U.S. Territories!


 Petition for a Robust National Public Health Care Option and Expansion and Enhancement of Medicaid Coverage


 Take a Survey Addressing the Vocational Needs of HIV-Positive People -- Deadline Extended!


 Ensure Congress Has a National AIDS Strategy


 Urge Your Senators to Co-Sponsor the Early Treatment for HIV Act