Why I Walk for AIDS: Reflections on Losing a Father to HIV
In 2002, Amanda's dad died suddenly from AIDS-related pneumonia. Amanda had no idea her father even had HIV. She was only 21. The event catapulted her into the world of HIV activism. Soon she was participating in her first AIDS walk, one of the HIV community's biggest ways to raise money and awareness. "As I walked, joined by thousands of participants, I suddenly no longer felt alone in my grief," Amanda recalls. "I sobbed behind big sunglasses." Years later, she's still doing those AIDS walks; in this moving article, she explains why. (Article from AIDS Walk New York)
Want to join an AIDS walk near you? Browse through this U.S. list of AIDS walks. New York City's walk is coming up on Sunday, May 17 (and the staff of TheBody.com will be there to help raise money for the cause -- you can help us by visiting our newly created team page and sponsoring one of our team members). If you don't find an AIDS walk in your area but still want to find a way to participate, contact your local HIV/AIDS organization and ask them how you can help make a difference!
Jim Pickett: Life in the Middle Ages
"All my kvetching aside, I am happy I made it to 43," says HIV advocate Jim Pickett. "Fourteen years ago, when I found out I was HIV positive, the drama queen in me had me burned up in a vase before 40." But Pickett is alive and well. OK, he's cranky, crampy and achy, and he's still so immature that the word "butter" sends him into giggles. But he's still around, energetic and ready for whatever the rest of his life will throw at him: "As long as I can crawl out of my crypt every morning, there is still a lot for me to do in my sensible shoes. And I intend to get on with it." (Article from Test Positive Aware Network)
HIV TREATMENT & HEALTH ISSUES
Swine Flu Update: It Still Probably Won't Kill You
Despite (or, some might argue, because of) a deluge of panicked, breathless media reports, swine flu -- or "novel H1N1 flu," as we're now being asked to call it -- has not yet evolved into the devastating global pandemic some feared. In fact, thus far swine flu has mostly proven to be no more dangerous than the regular flu. In the United States, although hundreds of swine flu cases have been reported in a total of 41 states as of May 6, health officials say the outbreak has been generally "mild" and doesn't appear to be spreading very rapidly. It's still wise to play it safe -- wash your hands frequently, for instance, and try to avoid close contact with sick people -- but those are precautions everybody with HIV should already be taking to protect themselves from colds or the flu. Stay up to date on the latest swine flu developments by browsing our library of articles.
Included in our library is an excellent fact sheet just released by the U.S. Centers Disease Control and Prevention that lays out the most important things that adults living with HIV should know about the swine flu. Also be sure to check out our swine flu interview with top HIV specialist Joel Gallant, M.D., M.P.H., for more expert advice.
Starting HIV Therapy May Improve Some Markers of Heart Health, Small Study Finds
There's some new research in the ever-murky area of heart disease and HIV. A small study out of the Netherlands appears to show that when an HIV-positive person starts taking HIV meds, it can actually improve some markers of their heart health -- regardless of the type of regimen they take. These new findings won't necessarily clear up the still-obscure relationship between HIV, HIV meds and heart disease, but they do support the idea that starting HIV treatment may not automatically jack up your cardiovascular risk. (Study summary from aidsmap.com)
For much more info on the connections between HIV and your heart, browse TheBody.com's extensive library of overviews, news and the latest research.
A Cheaper, Safer Sustiva? Gates Foundation to Fund Trials of Lower HIV Drug Doses
Can well-known HIV meds work just as well -- but cost a lot less -- if you reduce their dosage? The Bill and Melinda Gates Foundation is giving $12.4 million to the University of New South Wales to study just that, beginning with Sustiva (efavirenz, Stocrin). The university estimates that, if reduced doses are proven to be just as effective as currently approved "full" doses, drug costs could be reduced by between 25 percent and 50 percent, plus people would experience fewer drug side effects. There's even some early evidence that many HIV meds besides Sustiva -- including Epivir (lamivudine, 3TC), Kaletra (lopinavir/ritonavir), Retrovir (zidovudine, AZT) and Reyataz (atazanavir) -- might be just as effective at lower doses. This could have important implications for both developed and developing countries. (Article from aidsmap.com)
Guidelines for the Prevention and Treatment of Opportunistic Infections in HIV-Positive People
Did you know that the U.S. health department has written up guidelines for how to prevent and treat most of the illnesses that are traditionally associated with HIV? This massive document, which was recently updated and is aimed mostly at health care workers, includes guidance on a huge range of so-called "opportunistic infections" such as Pneumocystis pneumonia and Mycobacterium avium complex, which can still affect people with HIV (especially people with low CD4 counts who are not on HIV meds). The document also has info on related sexually transmitted diseases, including hepatitis C, human papillomavirus and herpes. (Document from the U.S. Centers for Disease Control and Prevention and other sources)
Prepping for My U.S. Social Security Mental Health Interview|
(A recent post from the "Living With HIV" board)
I filed for Social Security Disability Insurance and received notice that the Social Security Department has set up an appointment with one of their psychologists. The letter tells me I have to bring a friend they can question also. Has anyone been through this? Can you tell me what they are going to do and what they are looking for? What kinds of questions will they be asking? I was diagnosed with AIDS in January 2009 and meet the health requirements, for good or bad. I guess they now want to see how bad my mind is? Any help is appreciated.
Click here to join this discussion thread, or to start your own!
HIV IN THE U.S. NEWS
New U.S. AIDS Czar Addresses Advocates as Impatience With Obama Administration Grows
"We're watching -- and tired of waiting!" was the rallying cry at a demonstration in Washington, D.C., during last month's AIDSWatch, the National Association of People With AIDS (NAPWA)'s annual lobbying event. According to Housing Works, U.S. HIV advocates' opinions are split between those who feel that the Obama administration's first 100 days is not much time to affect dramatic change, and those who are tired of waiting patiently for change on urgent matters like health care reform and housing for people with HIV. Newly appointed AIDS czar Jeff Crowley (a former NAPWA leader) defended taking a measured approach: "We need to do this right," he said of developing a national AIDS strategy. "We need to take our time." (Article from Housing Works)
For more coverage of Jeff Crowley's meeting with HIV advocates during AIDSWatch, read this article from the Bay Area Reporter. You can also read an article from CQ Weekly about how disappointed the AIDS Healthcare Foundation (AHF) is with Obama's first 100 days -- and, if you agree, you can send Obama an e-letter saying so that's been prepared by AHF.
Co-Pay Price Breaks Abound in U.S. for HIV Meds; Persistence May Pay Off
In these tough economic times, do you wish somebody would go to bat for you in your struggle to stay on top of the soaring cost of HIV meds? The Fair Pricing Coalition (FPC) has successfully negotiated agreements with many U.S. manufacturers of HIV meds to reduce co-pay costs. In this article, FPC provides a breakdown of each company's drug payment assistance program, as well as other prescription savings programs. FPC stresses that anyone should call the companies that make their meds and ask about patient assistance programs -- even if you think you won't be eligible! Drug companies have been known to make exceptions to their eligibility guidelines if a customer is persistent enough. (Article from Fair Pricing Coalition)
For more info on drug payment assistance programs and other forms of financial help that may be available to people (primarily those in the U.S.) who are on HIV meds, visit TheBody.com's library of articles.
Harlem HIV Advocate Trains "Information Warriors" to Talk Up Testing to Friends and Family
"I have to have an army of people helping me educate," says Vanessa Austin, HIV services outreach coordinator at Harlem Hospital Center in New York City. For Austin, the key to reaching the most people with her HIV advocacy work is training people to become "information warriors" who then spread messages about HIV prevention and testing to their peers. "We have to let them pass the information the way they're passing this virus," she says. Austin gives an exciting snapshot of her vital work in this interview with TheBody.com. (Article and audio from TheBody.com)
Vanessa Austin's interview is part of TheBody.com's ongoing podcast series HIV Frontlines -- U.S. Edition, in which we talk with the people who have made it their mission to provide HIV education, information and care to communities that need it most. Browse past HIV Frontlines -- U.S. Edition podcasts at TheBody.com's Podcast Central!
U.S. Teenagers Get Sex Education by Cell Phone
You're a teenager. You've got a question about sex. But who do you ask, and how can you do it privately? For teens in North Carolina, the answer is just a text message away. The Birds and Bees Text Line, staffed by experts at the Adolescent Pregnancy Prevention Campaign of North Carolina, is an innovative program that offers one-on-one, nonjudgmental (and non-abstinence-only) advice sent directly to teenagers' cell phones. It's among the most personal of a range of programs cropping up throughout the U.S. to give teens the sex ed they're looking for using the technology they hold most dear. (Article from The New York Times)
Many U.S. Teens Need HIV Education, but Aren't Getting It in Schools, Report Suggests
The story we highlighted above (about sex ed via text message) begs a glaring question: Are teens turning to services like these because their schools are failing to give them the info and the support they need? Take a look at this report by Jaime Gutierrez, M.P.H., on the state of HIV and sex education in U.S. schools. It points out that abstinence-only education is still going strong in many schools, and that even in schools where more comprehensive HIV and sex ed are allowed, teachers are often not well trained. In addition, the needs of high-risk students -- such as gay and transgender teens -- are often ignored, Gutierrez writes. (Article from ACRIA and GMHC)
For more about school-based HIV prevention, check out TheBody.com's collection of articles.