Who takes care of mom’s health when she’s too busy tending to her family?
“Justin’s HIV Journal” creator Justin B. TerrySmith and POZIAM’s Robert Breining
MARCH/APRIL 2010 www.hivplusmag.com
CYBER HAVENS Social networks for HIVers are popping up all over the Net
• EPZICOM, in combination with other antiretroviral agents, is indicated for the treatment of HIV-1 infection in adults. • EPZICOM is one of 3 medicines containing abacavir. Before starting EPZICOM, your healthcare provider will review your medical history in order to avoid the use of abacavir if you have experienced an allergic reaction to abacavir in the past. • In one study, more patients had a severe hypersensitivity reaction in the abacavir once-daily group than in the abacavir twice-daily group. • EPZICOM should not be used as part of a triple-nucleoside regimen. • EPZICOM does not cure HIV infection/AIDS or prevent passing HIV to others. By prescription only. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. Please see additional important information about EPZICOM, including boxed warnings, on the adjacent pages.
Save on your medication! Ask your doctor about the Patient Savings Card or visit www.mysupportcard.com to learn how to save on your out-of-pocket expenses. Subject to eligibility. Restrictions apply.
Important Safety Information EPZICOM contains abacavir, which is also contained in ZIAGEN® (abacavir sulfate) and TRIZIVIR® (abacavir sulfate, lamivudine, and zidovudine). Patients taking abacavir may have a serious allergic reaction (hypersensitivity reaction) that can cause death. Your risk of this allergic reaction is much higher if you have a gene variation called HLA-B*5701 than if you do not. Your healthcare provider can determine with a blood test if you have this gene variation. If you get a symptom from 2 or more of the following groups while taking EPZICOM, call your doctor right away to determine if you should stop taking this medicine. 1. Fever 2. Rash 3. Nausea, vomiting, diarrhea, or abdominal (stomach area) pain 4. Generally ill feeling, extreme tiredness, or achiness 5. Shortness of breath, cough, or sore throat Carefully read the Warning Card that your pharmacist gives you and carry it with you at all times. If you stop EPZICOM because of an allergic reaction, NEVER take EPZICOM or any other abacavir-containing medicine (ZIAGEN, TRIZIVIR) again. If you take EPZICOM or any other abacavir-containing medicine again after you have had an allergic reaction, WITHIN HOURS you may get life-threatening symptoms that may include very low blood pressure or death. If you stop EPZICOM for any other reason, even for a few days, and you are not allergic to EPZICOM, talk with your healthcare provider before taking it again. Taking EPZICOM again can cause a serious allergic or life-threatening reaction,
EVEN WITH HIV,
“ I AM A
“All my life, I’ve powered through any problem that came up. But when I was diagnosed with HIV, it stopped me in my tracks. It took a while, but now I realize I have to keep going. And the more I use my mind, my body, and my strength against HIV, the more I learn how powerful I really am.
DRIVING FORCE.”
“My meds are a big help. When I asked my doctor about my options, he told me about EPZICOM. “Turns out that, in combination with other medications, it’s clinically proven to help keep HIV from making copies and infecting healthy cells. And, 68% of patients taking a regimen with EPZICOM had their viral load become undetectable in less than one year. On top of that, they saw a 93% increase in their T-cell counts.* “Less than a year later, I’ve reached another milestone—my HIV is undetectable.” †
Ask your doctor if EPZICOM is right for you. Learn more at www.EpzicomHelp.com
*HEAT study of 688 patients defines undetectable as a viral load less than 50 copies/mL. Baseline median T-cell count for patients receiving EPZICOM was 214 cells/mm3 and at the 48-week mark, patients saw a median increase of 201 cells/mm3 in their T-cell count. † Not an actual patient testimonial. Based on collection of real patient experiences. Individual results may vary.
even if you never had an allergic reaction to it before. If your healthcare provider tells you that you can take EPZICOM again, start taking it when you are around medical help or people who can call a healthcare provider if you need one. A buildup of lactic acid in the blood and an enlarged liver, including fatal cases, have been reported. Do not take EPZICOM if your liver does not function normally. Some patients infected with both hepatitis B virus (HBV) and HIV have worsening of hepatitis after stopping lamivudine (a component of EPZICOM). Discuss any change in treatment with your healthcare provider. If you have both HBV and HIV and stop treatment with EPZICOM, you should be closely monitored by your healthcare provider for at least several months. Worsening of liver disease (sometimes resulting in death) has occurred in patients infected with both HIV and hepatitis C virus who are taking anti-HIV medicines and are also being treated for hepatitis C with interferon with or without ribavirin. If you are taking EPZICOM as well as interferon with or without ribavirin and you experience side effects, be sure to tell your healthcare provider. When you start taking HIV medicines, your immune system may get stronger and could begin to fight infections that have been hidden in your body, such as pneumonia, herpes virus, or tuberculosis. If you have new symptoms after starting your HIV medicines, be sure to tell your healthcare provider. Changes in body fat may occur in some patients taking antiretroviral therapy. These changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the trunk. Loss of fat from the legs, arms, and face may also occur. The cause and long-term health effects of these conditions are not known at this time.
Some HIV medicines, including those containing abacavir (ZIAGEN, EPZICOM, and TRIZIVIR), may increase your risk of heart attack. If you have heart problems, smoke, or suffer from diseases that increase your risk of heart disease, such as high blood pressure, high cholesterol, or diabetes, tell your healthcare provider. The most common side effects seen with the drugs in EPZICOM dosed once daily were allergic reaction, trouble sleeping, depression, headache, tiredness, dizziness, nausea, diarrhea, rash, fever, stomach pain, abnormal dreams, and anxiety. Most of the side effects do not cause people to stop taking EPZICOM.
I’ve got the fight in me.
EPZICOM® (abacavir sulfate and lamivudine) Tablets MEDICATION GUIDE EPZICOM® (epʹ zih com) Tablets Generic name: abacavir (uH-BACK-ah-veer) sulfate and lamivudine (la-MIV-yoo-deen) Read the Medication Guide that comes with EPZICOM before you start taking it and each time you get a refill because there may be new information. This information does not take the place of talking to your doctor about your medical condition or your treatment. Be sure to carry your EPZICOM Warning Card with you at all times. What is the most important information I should know about EPZICOM? • Serious Allergic Reaction to Abacavir. EPZICOM contains abacavir (also contained in ZIAGEN® and TRIZIVIR®). Patients taking EPZICOM may have a serious allergic reaction (hypersensitivity reaction) that can cause death. Your risk of this allergic reaction is much higher if you have a gene variation called HLA-B*5701 than if you do not. Your doctor can determine with a blood test if you have this gene variation. If you get a symptom from 2 or more of the following groups while taking EPZICOM, call your doctor right away to determine if you should stop taking this medicine.
Group 1 Group 2 Group 3 Group 4 Group 5
Symptom(s) Fever Rash Nausea, vomiting, diarrhea, abdominal (stomach area) pain Generally ill feeling, extreme tiredness, or achiness Shortness of breath, cough, sore throat
A list of these symptoms is on the Warning Card your pharmacist gives you. Carry this Warning Card with you. If you stop EPZICOM because of an allergic reaction, NEVER take EPZICOM (abacavir sulfate and lamivudine) or any other abacavir-containing medicine (ZIAGEN and TRIZIVIR) again. If you take EPZICOM or any other abacavir-containing medicine again after you have had an allergic reaction, WITHIN HOURS you may get life-threatening symptoms that may include very low blood pressure or death. If you stop EPZICOM for any other reason, even for a few days, and you are not allergic to EPZICOM, talk with your doctor before taking it again. Taking EPZICOM again can cause a serious allergic or life-threatening reaction, even if you never had an allergic reaction to it before. If your doctor tells you that you can take EPZICOM again, start taking it when you are around medical help or people who can call a doctor if you need one. • Lactic Acidosis. Some human immunodeficiency virus (HIV) medicines, including EPZICOM, can cause a rare but serious condition called lactic acidosis with liver enlargement (hepatomegaly). Nausea and tiredness that don’t get better may be symptoms of lactic acidosis. In some cases this condition can cause death. Women, overweight people, and people who have taken HIV medicines like EPZICOM for a long time have a higher chance of getting lactic acidosis and liver enlargement. Lactic acidosis is a medical emergency and must be treated in the hospital. • Worsening of hepatitis B virus (HBV) infection. Patients with HBV infection, who take EPZICOM and then stop it, may get “flare-ups” of their hepatitis. “Flare-up” is when the disease suddenly returns in a worse way than before. If you have HBV infection, your doctor should closely monitor your liver function for several months after stopping EPZICOM. You may need to take anti-HBV medicines. • Use with interferon- and ribavirin-based regimens. Worsening of liver disease (sometimes resulting in death) has occurred in patients infected with both HIV and hepatitis C virus who are taking anti-HIV medicines and are also being treated for hepatitis C with interferon with or without ribavirin. If you are taking EPZICOM as well as interferon with or without ribavirin and you experience side effects, be sure to tell your doctor. EPZICOM can have other serious side effects. Be sure to read the section below entitled “What are the possible side effects of EPZICOM?” What is EPZICOM? EPZICOM is a prescription medicine used to treat HIV infection. EPZICOM includes 2 medicines: abacavir (ZIAGEN) and lamivudine or 3TC (EPIVIR®). See the end of this Medication Guide for a complete list of ingredients in EPZICOM. Both of these medicines are called nucleoside analogue reverse transcriptase inhibitors (NRTIs). When used together, they help lower the amount of HIV in your blood. This helps to keep your immune system as healthy as possible so that it can help fight infection. Different combinations of medicines are used to treat HIV infection. You and your doctor should discuss which combination of medicines is best for you. • EPZICOM does not cure HIV infection or AIDS. We do not know if EPZICOM will help you live longer or have fewer of the medical problems that people get with HIV or AIDS. It is very important that you see your doctor regularly while you are taking EPZICOM. • EPZICOM does not lower the risk of passing HIV to other people through sexual contact, sharing needles, or being exposed to your blood. For your health and the health of others, it is important to always practice safe sex by using a latex or polyurethane condom or other barrier method to lower the chance of sexual contact with semen, vaginal secretions, or blood. Never use or share dirty needles. Who should not take EPZICOM? Do not take EPZICOM if you: • have ever had a serious allergic reaction (a hypersensitivity reaction) to EPZICOM or any other medicine that has abacavir as one of its ingredients (TRIZIVIR and ZIAGEN). See the end of this Medication Guide for a complete list of ingredients in EPZICOM. • have a liver that does not function properly. • are less than 18 years of age. Before starting EPZICOM tell your doctor about all of your medical conditions, including if you: • have been tested and know whether or not you have a particular gene variation called HLA-B*5701. • are pregnant or planning to become pregnant. We do not know if EPZICOM will harm your unborn child. You and your doctor will need to decide if EPZICOM is right for you. If you use EPZICOM while you are pregnant, talk to your doctor about how you can be on the Antiviral Pregnancy Registry for EPZICOM. • are breastfeeding. Some of the ingredients in EPZICOM can be passed to your baby in your breast milk. It is not known if they could harm your baby. Also, mothers with HIV should not breastfeed because HIV can be passed to the baby in the breast milk. • have liver problems including hepatitis B virus infection. • have kidney problems. • have heart problems, smoke, or suffer from diseases that increase your risk of heart disease such as high blood pressure, high cholesterol, or diabetes. Tell your doctor about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. Especially tell your doctor if you take any of the following medicines*: • methadone • HIVID® (zalcitabine, ddC) • EPIVIR or EPIVIR-HBV® (lamivudine, 3TC), ZIAGEN (abacavir sulfate), COMBIVIR® (lamivudine and zidovudine), or TRIZIVIR (abacavir sulfate, lamivudine, and zidovudine).
How should I take EPZICOM? • Take EPZICOM by mouth exactly as your doctor prescribes it. The usual dose is 1 tablet once a day. Do not skip doses. • You can take EPZICOM with or without food. • If you miss a dose of EPZICOM, take the missed dose right away. Then, take the next dose at the usual time. • Do not let your EPZICOM run out. • Starting EPZICOM again can cause a serious allergic or life-threatening reaction, even if you never had an allergic reaction to it before. If you run out of EPZICOM even for a few days, you must ask your doctor if you can start EPZICOM again. If your doctor tells you that you can take EPZICOM again, start taking it when you are around medical help or people who can call a doctor if you need one. • If you stop your anti-HIV drugs, even for a short time, the amount of virus in your blood may increase and the virus may become harder to treat. • If you take too much EPZICOM, call your doctor or poison control center right away. What should I avoid while taking EPZICOM? • Do not take EPIVIR (lamivudine, 3TC), COMBIVIR (lamivudine and zidovudine), ZIAGEN (abacavir sulfate), or TRIZIVIR (abacavir sulfate, lamivudine, and zidovudine) while taking EPZICOM. Some of these medicines are already in EPZICOM. • Do not take zalcitabine (HIVID, ddC) while taking EPZICOM. Avoid doing things that can spread HIV infection, as EPZICOM does not stop you from passing the HIV infection to others. • Do not share needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes and razor blades. • Do not have any kind of sex without protection. Always practice safe sex by using a latex or polyurethane condom or other barrier method to lower the chance of sexual contact with semen, vaginal secretions, or blood. • Do not breastfeed. EPZICOM can be passed to babies in breast milk and could harm the baby. Also, mothers with HIV should not breastfeed because HIV can be passed to the baby in the breast milk. What are the possible side effects of EPZICOM? EPZICOM can cause the following serious side effects: • Serious allergic reaction that can cause death. (See “What is the most important information I should know about EPZICOM?” at the beginning of this Medication Guide.) • Lactic acidosis with liver enlargement (hepatomegaly) that can cause death. (See “What is the most important information I should know about EPZICOM?” at the beginning of this Medication Guide.) • Worsening of HBV infection. (See “What is the most important information I should know about EPZICOM?” at the beginning of this Medication Guide.) • Changes in immune system. When you start taking HIV medicines, your immune system may get stronger and could begin to fight infections that have been hidden in your body, such as pneumonia, herpes virus, or tuberculosis. If you have new symptoms after starting your HIV medicines, be sure to tell your doctor. • Changes in body fat. These changes have happened in patients taking antiretroviral medicines like EPZICOM. The changes may include an increased amount of fat in the upper back and neck (“buffalo hump”), breast, and around the back, chest, and stomach area. Loss of fat from the legs, arms, and face may also happen. The cause and long-term health effects of these conditions are not known. Some HIV medicines including EPZICOM may increase your risk of heart attack. If you have heart problems, smoke, or suffer from diseases that increase your risk of heart disease such as high blood pressure, high cholesterol, or diabetes, tell your doctor. The most common side effects with EPZICOM are trouble sleeping, depression, headache, tiredness, dizziness, nausea, diarrhea, rash, fever, stomach pain, abnormal dreams, and anxiety. Most of these side effects did not cause people to stop taking EPZICOM. This list of side effects is not complete. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088. How should I store EPZICOM? • Store EPZICOM at room temperature between 59º to 86ºF (15º to 30ºC). • Keep EPZICOM and all medicines out of the reach of children. General information for safe and effective use of EPZICOM Medicines are sometimes prescribed for conditions that are not mentioned in Medication Guides. Do not use EPZICOM for a condition for which it was not prescribed. Do not give EPZICOM to other people, even if they have the same symptoms that you have. It may harm them. This Medication Guide summarizes the most important information about EPZICOM. If you would like more information, talk with your doctor. You can ask your doctor or pharmacist for the information that is written for healthcare professionals or call 1-888-825-5249. What are the ingredients in EPZICOM? Active ingredients: abacavir sulfate and lamivudine Inactive ingredients: Each film-coated EPZICOM Tablet contains the inactive ingredients magnesium stearate, microcrystalline cellulose, and sodium starch glycolate. The tablets are coated with a film (OPADRY® orange YS-1-13065-A) that is made of FD&C Yellow No. 6, hypromellose, polyethylene glycol 400, polysorbate 80, and titanium dioxide. COMBIVIR, EPIVIR, EPZICOM, TRIZIVIR, and ZIAGEN are registered trademarks of GlaxoSmithKline. *The brands listed are trademarks of their respective owners and are not trademarks of GlaxoSmithKline. The makers of these brands are not affiliated with and do not endorse GlaxoSmithKline or its products. This Medication Guide has been approved by the US Food and Drug Administration.
Lamivudine is manufactured under agreement from Shire Pharmaceuticals Group plc, Basingstoke, UK ©2009, GlaxoSmithKline. All rights reserved. March 2009 EPZ:2MG ©2009 ViiV Healthcare Group of Companies All rights reserved. Printed in USA.
ECM423R1
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MARCH/APRIL 2010 í˛‘
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IN THIS ISSUE
FEATURES
30 Keyboard Wizards A new generation of HIVers is carving out a niche on the Net so that others like them can have a safe place to connect, get informed, and evolve at their own pace with their diagnosis.
36 Heal Her Even mothers living with HIV are famed for their strength, courage, and sheer stamina. But who is watching out for Mom when she spends endless hours looking after each member of her family? 41 Talk Time: How to share news of your diagnosis with your kids. 41 That Age: To avoid troubled teens, check in about your health issues.
DEPARTMENTS & VOICES
8 Status Symbols Serosorting could be putting some people in big danger. Plus: A roundup of advice and news for living your life to the fullest. 14 Take 5 15 Mind+Manner 21 Nutrition+Fitness
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“He was the voice of reason, and I let it be OK to take care of myself.”
22 H-Eye-V Eyewitnesses deliver HIV-related events from around the globe in living color.
—Sonja Ortman, on son Liam’s selfless nature
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42 HAART Beats The immune system launches a powerful attack against HIV—and almost immediately shuts that attack down. Plus: Lots more treatment news and advice. 44 Rx+Research 45 Medicine+Wellness
46 Perfectly Flawed Corey Saucier advises you know all about your own health—before a hospital stay.
48 Ask & Tell As moderator of an online HIVer group, Mark Flores knows about difficult topics.
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ON THE COVER: JUSTIN B. TERRY-SMITH AND ROBERT BREINING PHOTOGRAPHED BY BILL CRAMER FOR HIV PLUS.
MARCH/APRIL 2010 HIV PLUS
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What’s the biggest HIV risk for many women across the world? Marriage. Nearly all new HIV infections in women result from having sex with their husband or a “trusted” partner. A revolutionary program called Men As Partners® is making men part of the solution, transforming families and communities around the world. By engaging men to be true, supportive partners, they can prevent domestic violence, reduce the spread of HIV, and promote good health. Men As Partners® is just one way EngenderHealth creates lasting health improvements across Africa, Asia, and Latin America, as it has for 65 years. Help engender a better life. Visit www.engenderhealth.org or call 1-800-564-2872.
© 2008 EngenderHealth. “Men As Partners” is a registered trademark of EngenderHealth. Photo credit: O. Guiterrez/EngenderHealth. A copy of our annual financial report may be obtained from EngenderHealth at www.engenderhealth.org or the Office of the New York State Attorney General, Department of Law, Charities Bureau, 120 Broadway, New York, NY 10271.
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HIV PLUS
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I N T EL
FO R
BE T TE R
L IVING
STATUS SYMBOLS
Assumed Risk Experts have put forth all kinds of ideas to help reduce HIV transmissions, but a new study shows that one touted practice might well be creating even more harm
RUBY PORTER/PHOTONICA/GE T T Y IMAGES
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ince the beginning of the epidemic, gay men seeking unprotected intercourse have developed their own methods of attempting to prevent the spread of HIV—namely, selecting only partners with the same HIV serostatus as themselves. On its face, the practice—which the public-health sector has dubbed “serosortingâ€?—sounds like a no-brainer as a safety precaution. And researchers who’ve delved into the issue have found that the practice provides potential beneďŹ ts, along with some risks, for HIVpositive men. But for HIV-negative men, it’s a whole dierent—and dangerous—ball game. “It’s this paradoxical scenario where people believe they’re safe but are taking risks at the same time,â€? says Lisa A. Eaton, a postdoctoral fellow at the Yale School of Public Health and lead author of the study, whose results were published in the October issue of the journal AIDS Care. Her study found that between 21% and 62% of both HIV-negative and -positive men report serosorting. HIV-negative men are often falsely reassured by the assumption that their partners are also free of the virus—with many relying only on nonverbal cues to conďŹ rm another’s HIV status. For those who do ask about HIV, the study points out that it may be impossible for men to test for HIV frequently enough to accurately know their own serostatus. Furthermore, untreated sexually transmitted diseases can help fuel the spread of HIV among serosorting sexual networks. So for these men, Eaton points out, their approach to the practice of serosorting is actually increasing their risk for infection. Then there are some HIV-positive guys who, however, simply assume their partner is the same serostatus as themselves without actually having a conversation about HIV. As many as a third of seropositive gay men report having unprotected intercourse without ever disclosing their HIV status. And some say the false sense of security that serosorting is creating is really doing more harm
than good. Mark S. King, a blogger at TheBody.com, says that for HIV-negative men, “Serosorting is just a dierent name for the ignorance and lying we’ve been doing all along. Why call it ‘serosorting’? Call it ‘1985.’ â€? And though King doesn’t think the practice is OK for people who are HIV-negative, the 49-year-old has seen value in it for himself and other HIVers. He says he got tired of the anxiety about potentially infecting his partners and began exclusively seeking out other HIV-positive men. Among other reasons that many gay HIVers are motivated to serosort, Eaton’s study ďŹ nds, is the fear that disclosing will lead to stigma or personal rejection. They may also worry about state laws that criminalize HIV exposure. Longtime AIDS activist and AIDSMeds.com founder Peter Staley agrees with King’s approach: “I think serosorting for HIV-positive men, in my book, is a good thing. I actually consider it one of the perks of being HIV-positive—that we have far fewer issues to deal with from unprotected sex between each other than HIV-negative men do.â€? “It’s ironic,â€? King points out, though. “Jesse Helms wanted to put us on an island and otherwise segregate us. And now that’s exactly what we’re doing for ourselves. Just because it does lower that anxiety.â€? But concerns aren’t just about transmitting HIV. Unprotected sex outside of a mutually monogamous relationship in which both partners have been screened for STDs, experts point out, is always a risk. STDs can lower T-cell counts, raise viral loads, and generally put a body with a weakened immune system in a tailspin. Terry Smith, associate director of education at AIDS Project Los Angeles recommends that HIV-positive men with multiple partners get screened every three months for a range of STDs. And as for the much-debated potential for superinfection, Eaton’s review states that this is a proven risk. However, it is rare and tends to happen only in people who are newly infected. —Benjamin Ryan
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INDICATIONS ISENTRESS is an anti-HIV medicine used for the treatment of HIV. ISENTRESS must be used with other anti-HIV medicines, which may increase the likelihood of response to treatment. The safety and effectiveness of ISENTRESS in children has not been studied. It is important that you remain under your doctor’s care. ISENTRESS will NOT cure HIV infection or reduce your chance of passing HIV to others through sexual contact, sharing needles, or being exposed to your blood.
IMPORTANT RISK INFORMATION A condition called Immune Reconstitution Syndrome can happen in some patients with advanced HIV infection (AIDS) when anti-HIV treatment is started. Signs and symptoms of inflammation from opportunistic infections may occur as the medicines work to treat the HIV infection and strengthen the immune system. Call your doctor right away if you notice any signs or symptoms of an infection after starting ISENTRESS. Contact your doctor immediately if you experience unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This is because on rare occasions muscle problems can be serious and can lead to kidney damage. When ISENTRESS has been given with other anti-HIV drugs, the most common side effects included nausea, headache, tiredness, weakness, and trouble sleeping.
You are special, unique, and different from anyone else. And so is your path to managing HIV. When you’re ready to start HIV therapy, talk to your doctor about a medication that may fit your needs and lifestyle. In clinical studies lasting 48 weeks, patients being treated with HIV medication for the first time who took ISENTRESS plus Truvada: Had a low rate of side effects — In 4% of patients taking ISENTRESS plus Truvada versus 3% taking Sustiva plus Truvada, the most commonly reported side effect of moderate to severe intensity (that interfered with or kept patients from performing daily activities) was trouble sleeping Experienced less effect on LDL cholesterol (“bad” cholesterol) — Cholesterol increased an average of 6 mg/dL with ISENTRESS plus Truvada versus 16 mg/dL with Sustiva plus Truvada
Ask your doctor about ISENTRESS. isentress.com People taking ISENTRESS may still develop infections, including opportunistic infections or other conditions that occur with HIV infection. Tell your doctor about all of your medical conditions, including if you have any allergies, are pregnant or plan to become pregnant, or are breast-feeding or plan to breast-feed. ISENTRESS is not recommended for use during pregnancy. Women with HIV should not breast-feed because their babies could be infected with HIV through their breast milk. Tell your doctor about all the medicines you take, including prescription medicines like rifampin (a medicine used to treat infections such as tuberculosis), non-prescription medicines, vitamins, and herbal supplements. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088. For more information about ISENTRESS, please read the Patient Information on the following page.
ISENTRESS is a registered trademark of Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Copyright © 2010 2009 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. 21050040(1)(107)-03/10-ISN-CON 20901234(1)-1/10-JAN Sustiva is a registered trademark of Bristol-Myers Squibb Truvada is a registered trademark of Gilead Sciences, Inc.
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Progress for Females? Fail! Governments around the world tend to be tight-lipped about their progress in addressing the epidemic of HIV among women and girls, according to a report from the advocacy organization AIDS Accountability International. “There is widespread lack of accountability and transparency in national AIDS responses, meaning we do not have the information that we should about human and financial resources and how well countries are meeting their agreed targets for the well-being of women and girls,” says Rodrigo Garay, the organization’s executive director.
The report seeks to highlight the fact that AIDS is the leading cause of death worldwide among women in their reproductive years. In addition, the report finds that awareness of how to prevent the transmission of HIV varies widely from nation to nation. “I believe this report puts it all into reality and out of the illusion that we’ve come a long way to be [responsive] to the rights and needs of women,” says Sigrun Mogedal, a Norwegian foreignaffairs ambassador. “If any response should be gender-sensitive, it is the HIV and AIDS response.”
TAKE 5
Canada now allows gay men to be stem cell donors. Previously, gay and bisexual men were disqualiďŹ ed as candidates, just as they are from donating blood—the same policy that exists in the United States. Advocates say they hope the move will pave the way for changing how all blood and blood-product donations are handled.
Researchers from the University of California, Los Angeles, AIDS Institute demonstrate that human stem cells can be engineered to target and kill HIV-infected cells—proof, they reported in the online journal PLoS One,that human stem cells can be turned into the equivalent of a genetic vaccine.
4
The U.S. government ends its 20-year ban on funding needle-exchange programs with federal dollars, since the efforts have been shown to cut down on transmission of HIV and other blood-borne pathogens.
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Rejecting the AIDS denialist policies of his predecessor, South African president Jacob Zuma announces the expansion of anti-HIV treatment for pregnant women, children, and people coinfected with tuberculosis. The policy shift embraces new treatment guidelines from the World Health Organization.
The U.S. Centers for Medicare & Medicaid Services announces it will cover the cost of HIV testing for Medicare beneficiaries at increased risk of infection. This includes pregnant women as well as beneďŹ ciaries of any age who request they receive the test.
5
Creating Smaller Government?
320,000 The number of new patients provided for per year with antiretroviral treatment in the 2010–2014 President’s Emergency Plan for AIDS Relief—a ďŹ gure down from the previous pace of almost 500,000 each year since 2004. Upon release of the data from the White House, AIDS activists accused the Obama administration of turning its back on global HIV treatment in its attempt to focus more on prevention and on the less costly treatment of other diseases in poor countries. 14
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Depresson Is Lethal Depression is as much of a risk factor for death as smoking, according to a study by researchers at the University of Bergen, Norway, and the Institute of Psychiatry at King’s College London. Us i n g a u n i q u e l i n k between a survey of more than 60,000 people and a comprehensive mor t ality database, the researchers found that over the four years following the survey, the risk for death increased to a similar extent in people who were depressed as in people who were smokers. Robert Stewart, who led the research team at the Institute of Psychiatry, explains the possible reasons that may underlie these surprising findings: “Unlike smoking, we don’t know how causal the association with depression is, but it does suggest that more attention should be paid to this link because the association persisted after adjusting for many other factors.� Counterintuitively, though, th e s tudy s h ow e d that patients with a combination of depression and anxiety had a lower mortality rate compared with depression alone. Stewart says that one of the main messages from this research is that “a little anxiety may be good for you.�
AIDS DENIAL AND CIGARE T TE BY ISTOCKPHOTO; ALL OTHERS BY GE T T Y IMAGES
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THE TOP STORIES THAT HAD US SPENDING A LITTLE EXTRA TIME AT THE WATER COOLER
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Facing Uncertainty? You’ve Made It Before! “I’m having one of those days when the world feels like it’s crumbling around me. Gary McClain, Ph.D.
Be Art Smart
TAT TOO ART BY ISTOCKPHOTO; ALL OTHERS BY GE T T Y IMAGES
A new campaign hopes to warn people who want to adorn their bodies of the potential dangers associated with getting a tattoo or body piercing. The popularity of body art has tripled during the past decade. A 2006 survey by the Pew Internet Center found that 36% of 18to 25-year-olds and 40% of 26- to 40-year-olds have one or more tattoos. And in a study from Sacramento State University, 40% of college students said they thought piercing and tattoo parlors were safe. Experts, however, warn that the reuse of tattooing and piercing equipment can transmit blood-borne infections, including hepatitis C, that can cause a health setback for anyone with a compromised immune system. Paul King, a spokesman for the Association of Professional Piercers, acknowledges that there are virtually no guidelines for body art practitioners in many states: “It’s very much a ‘buyer beware’ situation.â€? The new campaign, “Be Smart With Body Art,â€? encourages tattoo seekers to ask ďŹ ve questions before undergoing a procedure:
h Do you use new needles? h Do you use new ink caps? h Do you sterilize all equipment that might come into contact with blood? h Do you use single-use latex gloves? h Do you cover fresh tattoos to prevent hep C transmission? See how the campaign is reaching out via online networking, visit us online at HIVPLUSmag.com
I know you’re supposed to be able to live tivity. Chances are that your view of realwith a certain amount of uncertainty ity will match your expectations. But like when you’re HIV-positive. I feel it every any poison, negative self-talk will shrivel time I have my numbers checked. But I away when zapped with your most powpick up the newspaper, and I’m automati- erful antidote: positive self-talk. cally stressed-out. This can’t be good for hRemind yourself how you’ve met my health.� challenges in the past. Start your list This lament from a client of mine, of antidotes with your greatest successes. who I’ll call Sarita, describes how a lot of Don’t forget your key skills and abilities. people think these days. Trying to stay Here’s one to add to the list: resilience. focused on the bright side can feel like an You have faced at least one life-altering uphill climb when we are all living with challenge—your HIV diagnosis—and so much upheaval in the world. Who moved forward with your life. So you isn’t worried about know you have what it takes to meet the the future? Who isn’t And as Sarita next challenge. worried about h Embrace your said, living with HIV “higher power.� means being aware the future? of the importance Believe in something of maintaining an beyond the bad news optimistic attitude. But what do you do and the day-to-day setbacks. Your higher when everywhere you look the evidence power can be found through a spiritual of uncertainty seems to be staring back or religious practice, or it might be found at you? in simply trusting in your own inner hGather your fan club. One of the les- strength. sons of uncertain times is to build a solid hNothing is guaranteed, except this support system. Who are the people in moment in time. Give up the struggle your life who help you bring out your best to be in control. You can’t go back and fix self—and who rely on you to do the same what you did or didn’t do in the past. You for them? Make sure you keep them close. can’t control the future. And you certainly Spending some time with your fans is a can’t control what anybody else is doing. good way to help you keep your focus on But you can be certain about doing the what’s going well in your life right now. best you can for yourself—and the hKeep antidotes for negative self- people you care about—right now. talk handy. When you tell yourself how With all of these resources, how bad scary and bleak the future looks, you are can things be? Take a deep breath and go training your mind to focus on the nega- with the flow. McClain welcomes e-mail at Gary@JustGotDiagnosed.com
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“October 25, 2002. It’s the day I learned I have HIV. It’s also the day I learned I have the most amazing friends and family. I wanted to hide away from the world—but they wouldn’t let me. They helped keep me going. Keep me moving. And keep me living. These days, I’m feeling good. And to make sure it stays that way, I’m always reading up on treatment options. When I learned that LEXIVA could reduce the amount of HIV in my blood, I asked my doctor about it.
LEXIVA has been part of my combination therapy for just over a year. And while I can’t speak for everyone who uses it, I know LEXIVA is working great for me. My viral load is down and my T-cell counts are up. My friends, family, and I couldn’t be happier with my results.”* *Not actual patient testimonial. Based on compilation of stories. Individual results may vary. By prescription only.
I have HIV.
I am cherished.
Models used for illustrative purposes only.
Models for illustrative purposes only.with other LEXIVAused is indicated in combination antiretroviral agents for the treatment of HIV infection. • The PI-experienced–patient study was not large enough to reach a definitive conclusion that LEXIVA/ritonavir and lopinavir/ritonavir are clinically equivalent • Once-daily administration of LEXIVA plus ritonavir is not recommended for PI-experienced patients or any pediatric patients LEXIVA does not cure HIV or prevent passing HIV to others. Please see Important Patient Information below and on the following page. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit fda.gov/medwatch, or call 1-800-FDA-1088. IMPORTANT SAFETY INFORMATION • You should not take LEXIVA if you have had an allergic reaction to LEXIVA or AGENERASE® (amprenavir).
• High blood sugar, diabetes or worsening of diabetes, and bleeding in hemophiliacs have occurred in some patients taking protease inhibitors. • When you start taking HIV medicines, your immune system may get stronger and could begin to fight infections that have been hidden in your body, such as pneumonia, herpes virus, or tuberculosis. If you have new symptoms a er starting your HIV medicines, be sure to tell your doctor. • Changes in body fat may occur in some patients taking antiretroviral therapy. The cause and long-term health effects of these conditions are not known at this time. • Skin rashes can occur in patients taking LEXIVA. Rarely, rashes were severe or life threatening. • Opportunistic infections can develop when you have HIV and your immune system is weak. It is very important that you see your healthcare provider regularly while you are taking LEXIVA to discuss any side effects or concerns. • Kidney stones have been reported in patients taking LEXIVA. Tell your healthcare provider if you have pain in your side, blood in your urine, or pain when you urinate. • Most common side effects in clinical studies were diarrhea, headache, nausea, rash, and vomiting. In most cases, these side effects did not cause people to stop taking their medicine.
Ask your doctor if LEXIVA is right for you. Learn more at www.LexivaHelp.com
BY YOUR SIDE • This list of drug DRUG INTERACTIONS • LEXIVA should not be taken with: AGENERASE® interactions is not complete. (amprenavir), Halcion® (triazolam), ergot medications Be sure to tell your healthcare provider about all medicines (Cafergot®, Migranal®, D.H.E. 45®, and others), Propulsid® you are taking or plan to take, including over-the-counter (cisapride), Versed® (midazolam), Orap® (pimozide), drugs, vitamins, and herbals. Zocor® (simvastatin), Mevacor® (lovastatin), Rifadin® RESISTANCE (rifampin), Rescriptor® (delavirdine mesylate), or St. John’s • Missing or skipping doses of your medicine may make it wort (Hypericum perforatum). If you are taking Norvir® easier for the virus to mutate and multiply. Your medicines (ritonavir), you should not take Tambocor® (flecainide) or may not work as well against a mutated virus, and you Rythmol® (propafenone hydrochloride). may become cross-resistant to other HIV medicines. It’s • Serious and/or life-threatening events could occur between important to take your medicine exactly as prescribed. LEXIVA and other medications, including Cordarone® (amiodarone), lidocaine (intravenous only), Elavil® (amitriptyline HCl), and Tofranil® (imipramine pamoate), SAVE ON YOUR MEDICATIONS tricyclic antidepressants, and Quinaglute® (quinidine). Ask your doctor about the Patient Savings Card • Women who use birth control pills should choose a different or visit www.mysupportcard.com to learn kind of birth control. The use of LEXIVA with Norvir how to save on your out-of-pocket expenses. (ritonavir) in combination with birth control pills may hurt Subject to eligibility. Restrictions apply. your liver. Also, birth control pills may not work if you take LEXIVA or LEXIVA with Norvir. Talk to your healthcare provider about choosing the right birth control for you. • Patients taking Viagra® (sildenafil citrate) or LEVITRA® (vardenafil HCl) with LEXIVA may be at increased risk of side effects.
PATIENT INFORMATION LEXIVA® (lex-EE-vah) (fosamprenavir calcium) Tablets and Oral Suspension Read the Patient Information that comes with LEXIVA before you start taking it and each time you get a refill. There may be new information. This information does not take the place of talking with your healthcare provider about your medical condition or treatment. It is important to remain under a healthcare provider’s care while taking LEXIVA. Do not change or stop treatment without first talking with your healthcare provider. Talk to your healthcare provider or pharmacist if you have any questions about LEXIVA. What is the most important information I should know about LEXIVA? LEXIVA can cause dangerous and life-threatening interactions if taken with certain other medicines. Tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. • Some medicines cannot be taken at all with LEXIVA. • Some medicines will require dose changes if taken with LEXIVA. • Some medicines will require close monitoring if you take them with LEXIVA. Know all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. Keep a list of the medicines you take. Show this list to all your healthcare providers and pharmacists anytime you get a new medicine or refill. Your healthcare providers and pharmacists must know all the medicines you take. They will tell you if you can take other medicines with LEXIVA. Do not start any new medicines while you are taking LEXIVA without talking with your healthcare provider or pharmacist. You can ask your healthcare provider or pharmacist for a list of medicines that can interact with LEXIVA. What is LEXIVA? LEXIVA is a medicine you take by mouth to treat HIV infection. HIV is the virus that causes AIDS (acquired immune deficiency syndrome). LEXIVA belongs to a class of anti-HIV medicines called protease inhibitors. LEXIVA is always used with other anti-HIV medicines. When used in combination therapy, LEXIVA may help lower the amount of HIV found in your blood, raise CD4+ (T) cell counts, and keep your immune system as healthy as possible, so it can help fight infection. However, LEXIVA does not work in all patients with HIV. LEXIVA does not: • cure HIV infection or AIDS. We do not know if LEXIVA will help you live longer or have fewer of the medical problems (opportunistic infections) that people get with HIV or AIDS. Opportunistic infections are infections that develop because the immune system is weak. Some of these conditions are pneumonia, herpes virus infections, and Mycobacterium avium complex (MAC) infections. It is very important that you see your healthcare provider regularly while you are taking LEXIVA. The long-term effects of LEXIVA are not known. • lower the risk of passing HIV to other people through sexual contact, sharing needles, or being exposed to your blood. For your health and the health of others, it is important to always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. Never use or share dirty needles. LEXIVA has not been fully studied in children under the age of 2 or in adults over the age of 65. Who should not take LEXIVA? Do not take LEXIVA if you: • are taking certain other medicines. Read the section “What is the most important information I should know about LEXIVA?” Do not take the following medicines* with LEXIVA. You could develop serious or life-threatening problems. • HALCION® (triazolam; used for insomnia) • Ergot medicines: dihydroergotamine, ergonovine, ergotamine, and methylergonovine such as CAFERGOT®, MIGRANAL®, D.H.E. 45®, ergotrate maleate, METHERGINE®, and others (used for migraine headaches) • PROPULSID® (cisapride), used for certain stomach problems • VERSED® (midazolam), used for sedation • ORAP® (pimozide), used for Tourette’s disorder • are allergic to LEXIVA or any of its ingredients. The active ingredient is fosamprenavir calcium. See the end of this leaflet for a list of all the ingredients in LEXIVA. • are allergic to AGENERASE (amprenavir). You should not take AGENERASE (amprenavir) and LEXIVA at the same time. There are other medicines you should not take if you are taking LEXIVA and NORVIR® (ritonavir) together. You could develop serious or life-threatening problems. Tell your healthcare provider about all medicines you are taking before you begin taking LEXIVA and NORVIR (ritonavir) together.
What should I tell my healthcare provider before taking LEXIVA? Before taking LEXIVA, tell your healthcare provider about all of your medical conditions including if you: • are pregnant or planning to become pregnant. It is not known if LEXIVA can harm your unborn baby. You and your healthcare provider will need to decide if LEXIVA is right for you. If you use LEXIVA while you are pregnant, talk to your healthcare provider about how you can be on the Antiretroviral Pregnancy Registry. • are breastfeeding. You should not breastfeed if you are HIV-positive because of the chance of passing the HIV virus to your baby through your milk. Also, it is not known if LEXIVA can pass into your breast milk and if it can harm your baby. If you are a woman who has or will have a baby, talk with your healthcare provider about the best way to feed your baby. • have liver problems. You may be given a lower dose of LEXIVA or LEXIVA may not be right for you. • have kidney problems • have diabetes. You may need dose changes in your insulin or other diabetes medicines. • have hemophilia • are allergic to sulfa medicines Before taking LEXIVA, tell your healthcare provider about all the medicines you take, including prescription and nonprescription medicines, vitamins, and herbal supplements. LEXIVA can cause dangerous and life-threatening interactions if taken with certain other medicines. You may need dose changes in some of your medicines or closer monitoring with some medicines if you also take LEXIVA (see “What is the most important information I should know about LEXIVA.”). Know all the medicines that you take and keep a list of them with you to show healthcare providers and pharmacists. Women who use birth control pills should choose a different kind of contraception. The use of LEXIVA with NORVIR (ritonavir) in combination with birth control pills may be harmful to your liver. The use of LEXIVA with or without NORVIR may decrease the effectiveness of birth control pills. Talk to your healthcare provider about choosing an effective contraceptive. How should I take LEXIVA? • Take LEXIVA exactly as your healthcare provider prescribed. • Do not take more or less than your prescribed dose of LEXIVA at any one time. Do not change your dose or stop taking LEXIVA without talking with your healthcare provider. • You can take LEXIVA Tablets with or without food. • Adults should take LEXIVA Oral Suspension without food. • Pediatric patients should take LEXIVA Oral Suspension with food. If vomiting occurs within 30 minutes after dosing, the dose should be repeated. • Shake LEXIVA Oral Suspension vigorously before each use. • When your supply of LEXIVA or other anti-HIV medicine starts to run low, get more from your healthcare provider or pharmacy. The amount of HIV virus in your blood may increase if one or more of the medicines are stopped, even for a short time. • Stay under the care of a healthcare provider while using LEXIVA. • It is important that you do not miss any doses. If you miss a dose of LEXIVA by more than 4 hours, wait and take the next dose at the regular time. However, if you miss a dose by fewer than 4 hours, take your missed dose right away. Then take your next dose at the regular time. • If you take too much LEXIVA, call your healthcare provider or poison control center right away. What should I avoid while taking LEXIVA? • Do not use certain medicines while you are taking LEXIVA. See “What is the most important information I should know about LEXIVA” and “Who should not take LEXIVA?” • Do not breastfeed. See “Before taking LEXIVA, tell your healthcare provider”. Talk with your healthcare provider about the best way to feed your baby. • Avoid doing things that can spread HIV infection since LEXIVA doesn’t stop you from passing the HIV infection to others. • Do not share needles or other injection equipment. • Do not share personal items that can have blood or body fluids on them, like toothbrushes or razor blades. • Do not have any kind of sex without protection. Always practice safer sex by using a latex or polyurethane condom to lower the chance of sexual contact with semen, vaginal secretions, or blood. What are the possible side effects of LEXIVA? LEXIVA may cause the following side effects: • skin rash. Skin rashes, some with itching, have happened in patients taking LEXIVA. Swelling of the face, lips, and tongue (angioedema) has also been reported. Tell your healthcare provider if you get a rash or develop facial swelling after starting LEXIVA.
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Who Crunched the Numbers? Until a few years ago the global HIV epidemic was widely expected to continue to spread, and the annual number of AIDS deaths was projected to grow from less than 3 million in 2002 to more than 6 million in 2030. But in 2008 the World Health Organization revised its 2030 estimate to 1.2 million, and U.N. projections conďŹ rm this downward revision. Nearly 5 million fewer deaths per year in 2030 is a favorable change, but how could studies published just a few years apart come to such di erent conclusions? Th at is one of the questions the authors of “How Many More AIDS Deaths?â€? set out to answer in The Lancet medical journal in January. “Earlier estimates of the epidemic were inflated because they relied mostly on HIV prevalence measures gathered from pregnant women in [developing countries’] antenatal clinics,â€? wrote John Bongaarts, Population Council vice president. In the past decade, however, national surveys have become available, he points out, and their more accurate estimates of HIV prevalence have been almost invariably lower than data from antenatal clinics suggested. More important, the epidemic trend has reversed. Globally, the number of new HIV infections “likely peaked in the late 1990s at over 3 million new infections per year,â€? he says. By 2007 that figure had gone down by half a million. As a result, Bongaarts estimates that “AIDS deaths peaked in 2005 at about 2.2 million. This number is lower than expected from the epidemic’s natural course because of an aggressive global campaign to provide antiretroviral drugs to patients with AIDS everywhere.â€? But Bongaarts gives a warning: “Th e future course of the epidemic crucially depends on continuing ongoing declines in new HIV infections by strengthening preventive measures.â€? MARCH/APRIL 2010 í˛‘
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A nationwide study out of Switzerland has found that suicide rates among HIV patients decreased by more than half after 1996, when highly active antiretroviral therapy was introduced. Despite the dramatic decrease, though, HIVers’ suicide rate still significantly exceeded that of the general population. The study also showed that the majority of patients who died by suicide (62%) had a mental illness diagnosis. Writing in the advance online edition of The American Journal of Psychiatry, the study’s researchers have determined that the reduction in suicide risk after the introduction of combination antiretroviral therapy was associated with an increase in CD4 cells. However, they point out, although suicide rates declined, there’s still a serious public-health concern that HIVers aren’t getting proper mental health treatment, saying, “HAART is not a cure.”
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Suicide Rates Make Big Decline
The Kids Left Behind 32%: The proportion of children in South Africa who will have lost one or both parents to AIDS by 2015, according to a report by the South African Institute of Race Relations. The report says that in 2007, 2.5 million children had lost one or both parents, and AIDS was the cause of more than half these deaths. By 2007, 701,000 children had lost both parents, almost twice the number without parents in 2002.
32%
Should HIV-Related Ads Be Sexy? The Minnesota AIDS Project’s campaign to promote its AIDS Walk among young gay men has drawn mixed reactions. The agency’s print ads feature ďŹ t, oil-slathered young guys wearing nothing but orange banners reading “How Much Will You Raise?â€? across their midsections, with the text making use of a sexual double entendre. The promotion has touched o a heated discussion in local circles questioning whether sex should be used to promote an AIDS event, and whether such an approach might actually encourage promiscuity. Weigh in with your thoughts about a “sex sellsâ€? strategy used in conjunction with HIV-related campaigns by voting in our poll at HIVPLUSmag.com
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tips+tools The AIDS and Law Exchange is a new online tool for activists, community-based organizers and groups, policy makers, and others looking for info on HIV and the law. Boasting a database of nearly 3,000 reports (available in English, French, Spanish, and Russian) as well as opportunities to ask questions of experts, the AIDSLEX site documents a range of accounts of human rights abuses and other legal issues by people who are living with the virus. Check it out by visiting us online at HIVPLUSmag.com
NUTRITION
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To Achieve Top Form, Control Your Blood Sugar Between HIV infection and its treatment, there is a higher risk for the development of insulin resistance and prediabetes or type 2 diabetes. Cade Fields-Gardner
By now you have probably seen a those in both groups showing lot of information on how to con- results in improved blood-glucose trol blood glucose and the lab value levels even in the first week and that clinicians look at to monitor its somewhat progressively improvlonger-term control, hemoglobin ing through the 10-week duration. A1c (HbA1c). Aerobic-style exercise When the researchers looked at is often recommended to help to the HbA1c levels, it was only the improve sensitivity resistance-exercise to our own insulin, group that achieved but resistance— Yoga has also levels in the target that is, strengthbeen shown range. training—exerWhat does this to improve cise may not be mean? Strength trainanxiety, emphasized as ing should be considdepression— much. ered a strong feature Researchers even irritable of exercise planning have looked at for many reasons. bowel what could hapNot only does it help syndrome! pen in middle-age to maintain that couch potatoes all-important leanwith type 2 diabetes if they were muscle tissue that helps to keep to undertake either a resistance or your body functioning and strong, an aerobic exercise program for 10 it also helps to keep blood sugars weeks. What they found was that under control, which is extremely those who practiced strength- important to prevent those annoytraining or treadmill exercise three ing complications—like cardiovastimes a week benefited both by cular disease—from taking hold. lowering blood-sugar and HbA1c So even if you are a couch potato levels. But the strength-training now and aren’t really fond of the group benefited even more than idea of a treadmill for exercise, it the treadmill group. is worth getting to work on those The effect is pretty quick, with muscles!
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LIFE AND LIMB Reinaldo Martinez Perez holds a candle and pushes a box of money while crawling toward a sanctuary near Havana as he fulfils a promise made to San Lazaro, patron saint of lepers. Martinez is asking for a longer life because he purposely injected himself with HIV five years ago when he fell in love with a girl living with the virus.
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FACING NEEDS A man puts on makeup for an AIDS awareness party financed by public funds in Dali, in southwest China’s Yunnan province. The government has switched to a strategy of outreach to gay men to fight the spread of HIV after the health minister warned that gay sex had become a primary factor in the virus’s spread.
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Kids show off soccer balls and flags, gifts they received from athletes in the Sports Heroes Walk Against HIV/AIDS in Lompopo, South Africa. The international soccer federation, FIFA, has also opened the Football for Hope center on the outskirts of Cape Town to help tackle HIVrelated problems in the hard-hit nation.
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HAVE KNOTS Bono ties the shoelace of English footballer Didier Drogba, setting up a photo op to promote Lace Up, Save Lives. Some of the world’s best-loved soccer players joined the U2 lead singer for the announcement of the joint venture between Product (RED) and Nike, which designed specially emblazoned red shoelaces for the campaign. The partnership plans to fight HIV in Africa by delivering funds to support programs that offer education and medication.
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SHOCK AND AWE A Buddhist monk looks over the preserved body of a young AIDS victim displayed at the Wat Phra Baht Nam Phu temple in Thailand’s Lopburi province, about 90 miles north of Bangkok. The temple has a housing project for HIVers who have no health care or place to live. Estimates say one in every 55 Thais are living with the virus—a number expected to swell to one in five within 10 years.
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SIMPLY RED Rio de Janeiro’s landmark statue, Christ, the Redeemer, which overlooks the Rodrigo de Freitas lagoon, stands lit in a red glow in December for the city’s observance of World AIDS Day.
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DIGITAL DEFENDERS Justin B. Terry-Smith and Robert Breining are pairing Web-based socializing with information sharing.
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100100100100101010101111001010101001100110010101010101010100100100101 1111001010110011001010111010101010100100100100101010101111001010101001 witter. YouTube. Facebook. launched in 2008, and SINMen.net, a networking “People want 100100100100101010101111001010101001100110010101010101010100100100101 MySpace. Podcasts. Skype. To website created in 2009 by Bryan Levinson, the more than all that medical information. They want to talk with someone like themselves— who is‌ experiencing the same feelings.â€?
tips+tools Find links to vlogs and websites in this article by visiting us online at HIVPLUSmag.com
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many people, these names might sound like a foreign tongue. But a new generation of HIVers and activists is not only uent in the language of social media and digital communication but also using it more than ever before to inform, connect with, and support their peers. While 20 years ago a person with HIV had to physically volunteer at an AIDS service organization, attend a support group, or join an activist organization like ACT UP to meet others living with the virus, HIVers today can simply plop down in front of their computers and ďŹ nd a supportive, thriving community right at their ďŹ ngertips. “What most people do when they’ve been diagnosed is to jump onto Google and start trying to ďŹ nd as much information as they can,â€? says Philadelphian Robert Breining about the role the Internet plays in most HIVers’ lives. “But people want more than all that medical information. They want to talk with someone like themselves—who is feeling the same pain and experiencing the same feelings. So I started thinking, Wouldn’t it be great if there was a place like Facebook or MySpace for HIV-positive people where they could do all of that?â€? And more and more, it’s the everyday person, like 30-year-old Breining—and not big corporate entities—who is creating cross sections of socializing and information sharing for others just like themselves. In October 2007, Breining launched POZIAM, a free website where users post proďŹ les and photos, send personalized notes, use online chat, create their own blogs, and access message boards. Breining expanded the site a few months later to include a weekly Internet radio broadcast, which today he cohosts with fellow HIVers Jeromy Dunn and former Project Runway star Jack Mackenroth. Other free websites—like BeOneCity.com,
founder of the global organization Strength in Numbers, similarly provide numerous Facebook-like interactive functions to help HIVers connect with each other. But social networking sites are just one of the myriad ways HIVers are using state-of-the art digital technology to connect to and communicate with each other. For example, Sherri Lewis, better known as Sherri Beachfront of the ’80s pop band Get Wet, has created a library of dozens of her Straight Girl in a Queer World podcasts. [Lewis’s collection is hosted by Here! Networks, which is part of Here Media, the parent company of HIV Plus.] She says her aim was to look beyond the clinical aspects of HIV disease to “how to live life with HIVâ€? through an entertainment talk show that includes red-carpet events, celebrity guests, and other HIV-positive people. Then, there is 21-year-old Augusta, Ga., political science student Johnathan Shaw, who has a YouTube channel called “Positively Johnathan,â€? where he posts a video blog, or “vlog,â€? about his ďŹ rst year of living with HIV. Similarly, 30-yearold Laurel, Md., HIVer Justin B. Terry-Smith maintains a mixed-media blog called “Justin’s HIV Journal,â€? which addresses a variety of social and political issues in addition to his life with HIV. Even AIDS service organizations are embracing digital media in new and unexpected ways. While virtually every mid- to largesize ASO has a dedicated website or even multiple sites for speciďŹ c agency programs or fund-raisers, the Los Angeles Gay and Lesbian Center in 2008 began charting new online territory with its ongoing Internet-based soap opera, In the Moment. The series “webisodesâ€? (a new batch of which began rolling out in February) provide HIV-prevention and harmreduction messages by following a group of young men as they deal with issues like HIV
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100100100101010101111001010101001100110010101010101010100100100101010 001010110011001010111010101010100100100100101010101111001010101001100 and STDs, safer sex, drug abuse, sex addiction, more important, as little—personal information “I want to 100100100101010101111001010101001100110010101010101010100100100101010 about themselves as they choose online. and inďŹ delity, among others. The series allows the Los Angeles agency to reach a generation of gay men who are signiďŹ cantly more likely to spend their free time online than attending the agency’s in-person support groups and other programs, says Susan Cohen, director of the center’s Health Education and Prevention department. “The bottom line,â€? she says, “is that we need to access the community where it is—and that’s online.â€? But while HIV-positive bloggers, vloggers, and social-networking site creators are also keenly aware of the ever-increasing reach of digital media, particularly among youth and young adults, the reasons many choose to begin their online endeavors are often far more personal than practical. “I actually ďŹ nd it’s much easier to deal with my own HIV by being open about it. It’s cathartic,â€? says Shaw, who in addition to launching his YouTube vlog in March 2009 just three months after his diagnosis also disclosed his serostatus on Facebook only a week after he learned he was HIV-positive. “And if my story helps others too, then all the better.â€? Terry-Smith says he began his blog mostly as a way to give HIVers like himself a voice in the digital realm. “I looked around and I didn’t see any young African-American gay men reaching out online. No one else was doing this,â€? he explains. For Breining, a major goal of his website and radio program, he says, is to show other HIVers that it’s possible to live a long, healthy, and productive life with the disease. “I want to give people hope,â€? he states simply. “I want them to see that it’s not all gloom and doom, sickness and death.â€? Many of these hopeful messages are aimed speciďŹ cally at newly diagnosed HIVers, who tend to join digital communities and follow bloggers and vloggers in large numbers because they’re able to share as much—and, perhaps
“A lot of people are uncomfortable or really afraid to have someone they know ďŹ nd out that they’re HIV-positive, but they’re still looking for support or friendship or just someone who understands what they’re going through,â€? explains Breining, who allows POZIAM users to shield their identities. “Now they can go online and share as much or as little about themselves and still get what they need.â€? But the relative anonymity of cyberspace also has a signiďŹ cant downside—the ability for social media users, even onetime visitors to a site, to leave oensive public comments. That very situation almost derailed Terry-Smith’s online video blog, “Justin’s HIV Journal,â€? shortly after his very ďŹ rst entry. “The ďŹ rst comment I got was horrible,â€? TerrySmith recalls. “A guy basically said, ‘So you got poked by a dirty dick. So what?’ I almost took the video down because I thought those were the only kinds of comments I was going to get. But then, maybe two minutes later, I got a comment from someone who loved the blog and planned to keep following it. Then I got another comment like that, then another.â€? Shaw has also been the target of disparaging feedback. “Some people have suggested I’m doing this to try to become famous,â€? he says with a laugh. But by and large, he notes, the reaction has been complimentary. And sometimes it’s downright astonishing. “I had gotten an e-mail from this guy who was really depressed since he had gotten HIV and was actually thinking of taking his life,â€? Shaw recalls. “But he said he found my blog and connected with my message that you can live a full life with HIV and you don’t need to be treated any dierently than anyone else. He said that gave him a whole new perspective and that he’s now committed to making his life better. That made me feel really good, like I’m truly making a dierence.â€? í˛‘
give people hope. I want them to see that it’s not all gloom and doom, sickness and death.�
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Care Giver As the on-the-go caretaker in most families, a mom rarely has a spare moment to pay attention to her own needs—but she really needs to when she’s living with HIV B Y B E N J A M I N R YA N P H O T O G R A P H E D E X C L U S I V E LY FOR HIV PLUS BY PETER HOFFMAN
A PEACEFUL MOMENT Sonja Ortman and son Liam spend some reading time together before the start of their day.
The ďŹ rst time Sonja Ortman got pregnant, in 1996, she was so afraid she’d transmit HIV to her baby that she chose to terminate her pregnancy. Pregnant again, in 2004, she was conďŹ dent enough by then with the advancements made in HIV medicine to jump into the unknown. She returned to the obstetrician she saw during her ďŹ rst pregnancy, she says, “to make the whole experience come full circle.â€? She went back and forth about whether to have a cesarean section, hoping for a vaginal birth instead but knowing it increased the risk of transmitting the virus to her infant during delivery. When her viral load spiked in her ninth month of pregnancy she felt pressured to make her decision. Her doctor at Planned Parenthood in Milwaukee posed one question to help her decide about her chances for transmitting the virus via either method: “What do you want? Do you want 1% to 2%, or do you want one one-hundredths of a percent?â€?
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“I said, ‘Doctor, why didn’t you tell me this nine months ago?’ â€? she recalls in an amused but still exasperated voice. “So that was just the whole start of the parenting choices that we make,â€? the 41-year-old says. “It’s not about me as a woman experiencing childbirth; it’s about the child.â€? A C-section brought her a healthy baby boy, Liam. And despite her admitted frustrations, she has a fond memory of her beloved doctor on that morning: “He was as calm and cool as the orange Popsicle he was eating as he walked into the room in his scrubs.â€? No one ever said motherhood was going to be easy, especially when it’s the mom who puts everyone else in the family ďŹ rst, even before her own needs. This is especially true for women already coping with HIV. HIV-positive women suffer from higher rates of depression, for starters—in no small part because of the eects of social stigma that follows HIVers. And at least one study has found that mothers living with HIV have particularly poor medication-adherence rates, with only about half the women in the study taking their meds properly. Debra Murphy, a psychologist at the University of California, Los Angeles, who researches HIV-positive mothers and was the lead author of the adherence study, says, “If you’re ill and depressed, that can have a negative impact on your kids [see “Child Monitorâ€? on page 37.] It’s important for HIV-positive mothers to take care of themselves—from medication adherence, keeping appointments, tending to their mental health, and not letting stigma inuence the family.â€? Tonya Rasberry, a 35-year-old peer counselor at Babes Network, which provides social services to women with HIV in the Seattle area, might be an expert on how best to take care of herself and her family simultaneously. But she still falls into familiar traps, she admits. “Moms always put all their stu on the back burner in order to put their family forward,â€? Rasberry says. “I’ve done it. I’ve
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“Moms always put their stuff on the back burner in order to put the family forward. I’ve done it. I’ve canceled my HIV doctor appointments because I wanted to go to my son’s basketball game.’�
canceled my HIV doctor appointments because I wanted to go to my son’s basketball game.â€? Yolanda Rodriguez-Escobar, the executive director of Mujeres Unidas Contra el SIDA, an AIDS service organization that targets HIV-positive Latinas in San Antonio, repeats an old refrain, one akin to the airplane safety instruction about putting your oxygen mask on ďŹ rst before assisting others: “You can’t take care of anybody if you’re not healthy.â€?
Out of the Mouths of Babes Sometimes it’s the kids who know best when it comes to self-care, Ortman says. Last year she ew home to Wisconsin in a rush after a week of work in Washington, D.C., so that she could be with 5-year-old Liam for Halloween. Even though she slept all day to rest up, she was still wiped out by the evening. When she reluctantly proposed going out for trick-or-treating, Liam was clearly thinking of his mom’s needs. “He told me, ‘Mom, it’s too cold and windy,’ â€? she says. “He was the voice of reason, and I let it be OK to take care of myself.â€? Her husband put dinner on, and the family curled up with It’s the Great Pumpkin, Charlie Brown. “Kids are wise,â€? Rodriguez-Escobar says. “We as parents oftentimes don’t give our kids credit for being astute or smart
enough to say, tips+tools ‘Wait a minute. Th is is wrong. Medical advances Mom, you need have reduced the to take care of odds of mother-tochild transmission yourself.’â€? of HIV to less than Acintia Rob1%. According to the inson, a 46-yearCenters for Disease Control old from San and Prevention, at least 8,650 HIV-positive women Diego, has also gave birth in the United beneďŹ ted from States in 2006--a 30% such precocious jump from 2002. To find wisdom. She out more about HIV and says she always pregnancy, visit us online at HIVPLUSmag.com wanted to be the perfect “TV mom,â€? like on The Brady Bunch or The Partridge Family. After she was raped and infected with HIV in 1995, she says, “I just knew my whole world had crumbled.â€? All her plans for the future, including a bid for city council, she recalls, seemed to fall away as she sunk into a deep depression. “My 12-year-old daughter,â€? she says, “told me at the time, ‘Mom, you’re such a strong person. You can do this!’ And I just looked at her real strange, like, How do you know? She saw something I didn’t know at that time. So I gathered up my strength, I took my—what we call—lemons, and I turned them into lemonade!â€? And Robinson found a new calling. For the past 14 years she has worked as an
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HIV advocate and peer educator. “I’m really thankful for all my kids,â€? she says, “because they don’t look at it as I did something wrong or something was done wrong to me. They look at it like, ‘My mom’s an advocate, and she’s out there ďŹ ghting for the rights of people living with HIV and AIDS!’ â€?
It’s the Little Things HIV can demand that moms juggle more than their fair share of lemons. Chicagoan Joann Montes, who at 45 has been mother to six children, one of whom died of cancer not long after her own HIV diagnosis, weathered a perfect storm when she was working as a bank teller. It was the day of a daughter’s parent-teacher conference, and she was trying to close down her station and get out the door. But the Friday rush wouldn’t give her a break. At the time one of her anti-HIV meds was causing her to have terrible diarrhea. She was forced to bolt in the middle of a transaction, leaving an angry customer behind. She didn’t make it to the restroom in time, though, and ended up in tears. Nevertheless, she rushed home, cleaned up, changed, and got to the conference. “I made it!â€? she says with pride. “I did not die of embarrassment.â€? Life struggles with the virus aren’t only physical and mental; for a family trying to get by, they can drain the budget. Ortman works for a company that helps keep medical societies ďŹ nancially sound. Her husband, who is also HIV-positive, works as a case manager assisting people who are on Medicaid. Despite being professional experts on managing medical expenses, their own health bills have still landed them in a bankruptcy ďŹ ling.
Meanwhile, there’s the thorny issue of public stigma. Living in rural Wisconsin, Ortman feels she needs to keep a tight lid on her HIV status and wonders how to handle the issue as Liam gets older. On that note, UCLA’s Debra Murphy has a bit of wisdom to oer: “You can’t change the world, but you can change how the child sees you coping with it.â€? Robinson, a model out-and-proud HIVer, says her kids, while supportive of her, still wrestle with the public nature of their mom’s HIV status. Her teen daughter has asked her to be careful not to speak at any local schools where word might get back to her peers. As for her grown son, she says, “He’ll call and say, ‘Mom, I’m wearing a red shirt today, and I’m making sure everyone in the store knows today’s World AIDS Day.’ But he won’t tell people, ‘My mother is HIV-positive.’ â€? Rasberry recommends that HIV-positive moms get their kids involved in activities with other families who have HIV-aected parents to help normalize their growing-up experience. Babes, for one, arranges outings for moms and their kids, giving them picnics or free trips to the zoo and the aquarium. Rodriguez-Escobar goes so far to suggest getting older kids involved with peer-education work of their own. Rasberry says that HIV has, in fact, made her a better parent: “I think I appreciate life more because I know nothing’s promised. It’s helped me be more open with my kids because I don’t ever want to say I didn’t teach them this or I didn’t tell them that.â€? Meanwhile, Ortman is taking time to enjoy the ongoing miracle of her son’s birth. “I’m not going to spoil him rotten,â€? she says, “but I am going to let him know, ‘Hey, you’re a special kid.’ â€? í˛‘
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Keep in tune with what’s going on with your kids to help avoid problems with them later There are two key things HIV-positive moms can do to help their children thrive through their teen years, according to a study by University of California, Los Angeles, researcher Debra Murphy. The ďŹ rst is to simply keep track of your kids’ lives. Know where they are and whom they’re with. Get to know their friends. Ask about what’s going on in school. Show interest in their interests. The second is to provide your children with a sense of stability by sticking to family routines. Regular family meal times are key. Other possible routines include bedtime stories when they’re young, group outings, gath-
Time for “The Talkâ€?? How to approach the subject of your HIV diagnosis with your children University of California, Los Angeles, psychologist Debra Murphy says the best age range to begin discussing HIV with your children is between 6 and 12 years. Many kids, she says, will already begin to pick up clues to the fact—from seeing medications in the house to just a general sense that something is going on in the family. If you wait too long to disclose, your kids can suer elevated anxiety as a consequence. Also, if you’re skipping meds or doctors’ appointments in order to keep HIV a secret from your child, disclosing will allow you to take better care of yourself. Many moms feel less depressed and enjoy better family togetherness afterward. Murphy recommends you make a solid plan about how and when to disclose and not do it on the spur of the moment. See if you can ďŹ nd other moms or someone at your local AIDS service organization to give you a sense of what questions your children may ask. Be as educated about HIV as you can so that you can respond to questions. Your children may get upset after you tell them. But Murphy has found that most kids will soon process the information well. äŠ?
erings after church, game night, or whatever activities your family might enjoy doing together. Murphy’s study found that the combination of “parental monitoringâ€? and regular family routines helps lower teenagers’ rates of aggression, anxiety and depression, heavy drinking, and delinquent behavior. Teens are also likely to develop an improved sense of self. “I think a lot of people look at [HIV-aected] families and focus on the negatives, the risk factors for these kids,â€? she says. “They don’t focus enough on the protective factors that can really change those outcomes to be more positive. And in this study I think the key ďŹ nding is that there are pretty simple things we can work with families on to improve the outcomes.â€? äŠ?
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Self-defeating Self-defense Researchers ďŹ nd that the body’s immune system actually shuts down one of its own potentially powerful attacks against invading HIV cells
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cientists who are trying to understand how to make an HIV vaccine have found the cause of a major roadblock to their work. It turns out that the immune system can indeed produce cells with the potential to manufacture powerful HIV-blocking antibodies; at the same time, though, the immune system works equally hard to make sure these cells are eliminated before they even have a chance to mature. “Our studies show that a potentially protective neutralizing antibody against a viral disease is under the control of immunological tolerance,â€? says Barton Haynes, MD, director of the Center for HIV/AIDS Vaccine Immunology at Duke University Medical Center. Haynes is the senior author of the study, which appeared online in the Proceedings of the National Academy of Sciences. “This represents a new insight into the way HIV eectively evades detection by the B-cell arm of the immune system and may oer new directions for vaccine design.â€? Over the years scientists have assumed that B cells—one of the ďŹ rst lines of defense against infection—are simply not able to “seeâ€? HIV. The virus has the ability to hide its most vulnerable parts from immune system surveillance, and researchers generally assumed that helped explain why B cells often took weeks and even months to arise following infection. But several years ago Duke researchers hypothesized that the antibodies required to broadly neutralize HIV may not be produced in the ďŹ rst place because the immune system sees them as a potential threat— because of their similarity to antibodies that pro-
mote autoimmune disease—and destroys them. To see if this is indeed what happens, Laurent Verkoczy, Ph.D., an assistant professor of medicine at Duke and the lead author of the study, and Haynes genetically engineered a mouse that could produce only B cells containing a rare but potent broadly neutralizing human antibody that is able to block HIV infection. They found that the mouse’s immune system produced plenty of early stage B cells bearing this human neutralizing antibody on their surface but eliminated most of them before they had a chance to fully evolve into mature B cells capable of secreting the antibody. â€?This work may mean that we need to think and act very dierently in envisioning how a successful vaccine may work,â€? Verkoczy says. “The good news is that while about 85% of the ‘right’ kind of B cells are eliminated, about 15% survive and wind up in circulating blood but are turned o. One goal in vaccine design may be to ďŹ gure out how to wake them up so that they can go to work.â€? Adds Haynes: “We have now unveiled a major reason why members of this class of neutralizing antibodies are not routinely made. Our own immune systems block their production because they are perceived as potentially harmful—when in reality they are not. This is a very unusual way the virus has developed to evade the immune system.â€? Haynes says researchers plan on using the new mouse model to test ways to teach the immune system to enable the production of powerful neutralizing antibodies capable of blocking HIV.
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HAART BEATS
MED COCKTAILS ARE INDEED SAVING LIVES
WELLNESS
Are You Looking Out for Your Future? An article in New York magazine in November proďŹ led a number of HIVers and what could be called their accelerated aging. Dan Bowers, MD
These people’s portraits and very personal stories put real faces on this issue. It caused quite a buzz in my Midtown Manhattan practice. We all recognize that we are blessed with antiretroviral combination therapies that have pushed the life expectancy to about 45 years for those newly diagnosed with HIV. Nationally about 25% of people with HIV are older than 50—about seven times more than the number of HIVers at that age in 1990. Here in New York City about 36% of people living with HIV are over 50. In San Francisco it is 40%. By 2015, 50% of HIVers in this country will be over 50. People over 50 account for about 15% of all new HIV diagnoses. But they are often found later in the disease and are sicker than those diagnosed in their 20s. They tend to advance to an AIDS diagnosis more quickly and have less robust CD4-cell responses to medications, even when their viral loads remain undetectable. One common explanation for this young-versus-old difference is the natural decline in the thymus, the organ that generates CD4 cells. It starts to shrink soon after we are born. Later in life, it makes not only fewer CD4 cells but also less-efficient ones. However, superimposed on this scenario are recent findings that people with HIV have reduced cerebral blood flow, stiffer blood vessels, and frailer bodies than their HIV-negative peers. The current thinking is that these problems are caused by the prolonged inflammation and chronic immune activation from HIV and not from the direct
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effect of HIV [see my article, “Maybe More Than a Gut Feeling,� in the September/October 2009 issue]. This would be consistent with autopsy findings that show that HIV cannot be found in the brains of those who died with HIV dementia. Rather, there is evidence of chronic inflammation. In addition, markers of chronic inflammation such as IL-6 and C-reactive protein are elevated in HIV patients—even when viral loads are undetectable. So does this mean it is useless to treat HIV? No. It may mean, though, that it is important to treat HIV as soon as possible. As was demonstrated in North American AIDS Cohort Collaboration on Research and Design data, people who start HIV treatment sooner—that is, when CD4 cells are still over 500—have 60% fewer deaths, including from heart, liver, and kidney causes, than those who wait longer. Interestingly, seven of the eight people pictured in the New York article each tested HIV-positive between 17 and 28 years ago, well before the first three-drug regimens were available. Therefore, it will be important to see if the effect of treating people earlier can mitigate some of this accelerated aging. And don’t forget what you can do on your own: Stop smoking, exercise more, don’t take street drugs, reduce alcohol intake, and control your cholesterol, blood pressure, weight, and blood sugar. Just as interventions reduced the increase in heart disease after the introduction of the first protease inhibitors, all of these steps can help too.
While the 1996 introduction of AIDS drug cocktails has significantly improved immune function in patients, the impact of treatment on overall survival has remained unclear. To determine whether combination therapy was indeed saving lives, Miguel A. Hernan, MD, of the Harvard School of Public Health, and colleagues examined data from 12 studies involving 62,760 U.S. and European patients new to HIV therapy who were followed for an average of 3.3 years. The average death rate declined by half for people receiving antiretroviral treatment. A total of 2,039 patients died during follow-up. After adjusting for factors that may have inuenced death rates, the team found the risk of death was 52% lower in those who started treatment relative to those who did not—a ďŹ nding that “was stronger in those with worse prognosis at the start of follow-up,â€? says Hernan’s team. According to the researchers, this demonstrates the beneďŹ ts of being treated even at the most advanced stages of disease.
Researchers Surprised by Heart Disease in Young Men Relatively young men with longstanding HIV infection and minimal cardiac risk factors have signiďŹ cantly more coronary atherosclerotic plaque—some involving serious arterial blockage—than uninfected men with similar cardiovascular risk, according to a Massachusetts General Hospital study. The investigation, which was reported in the January issue of the journal AIDS, is the ďŹ rst to use a computerized tomography angiography to identify coronary artery plaque in HIVinfected participants. “We were particularly surprised to ďŹ nd that several of the patients—none of whom had symptoms of heart disease—had obstructive coronary artery disease, which was found in none of the controls,â€? says Janet Lo, MD, who led the study. “It appears that both traditional and nontraditional risk factors are contributing to atherosclerotic disease in HIVinfected patients.â€?
GE T T Y IMAGES
MEDICINE
Research for Child HIVers Needed The death rates of children with HIV have decreased ninefold since doctors started prescribing cocktails of antiretroviral drugs in the mid 1990s, concludes a large-scale study of the long-term outcomes of children and adolescents with HIV in the United States published in the Journal of Acquired Immune DeďŹ ciency Syndromes. Despite this improvement, however, young people with HIV continue to die at 30 times the rate of youths of similar age who do not have HIV, according
Rx
The Food and Drug Administration has granted full approval to nonnucleoside reverse transcriptase inhibitor Intelence, according to Johnson & Johnson’s Tibotec division. The FDA granted conditional approval for the medication in 2008. Follow-up data have shown that 60% of patients on Intelence for 48 weeks attained undetectable viral loads, compared to 38% of control patients.
GE T T Y IMAGES
Integrase inhibitor Isentress has been recommended in combination therapy as a preferred regimen for treatment-naive, nonpregnant patients,
Did the Common Cold Foil HIV Vaccine? A common cold virus used in an experimental HIV vaccine in the STEP study was probably an inappropriate vehicle for stimulating immune cells to fi ght HIV, according to a new study published in the Proceedings of the National Academy of Sciences. Investigators propose that the vaccinestudy participants’ mucous membranes could have produced large numbers of CD4 cells because the researchers used an adenovirus to carry genetic HIV material that they hoped would prompt an immune response to prevent HIV’s spread. The increased level of CD4 cells in the mucous membranes could, they theorize, have provided HIV with an abundance of the very cells the virus infects, leading to the increased infection rates. �If our hypothesis is correct, then the use of an adenovirus vaccine against any disease in an area of high HIV prevalence may increase risk of HIV infection,� says Steven Patterson, the study’s lead author. In a headline-generating move, researchers halted the STEP trial in 2007 after it appeared that volunteers who received Merck’s vaccine candidate were more likely to later contract HIV than before they participated in the study.
DEVELOPMENTS IN MEDICAL STUDIES
RESEARCH
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to researchers from the National Institutes of Health. Earlier studies have shown that adults with HIV are living longer because of improved multidrug antiretroviral regimens known as highly active antiretroviral therapy. “We must now better understand and pursue treatments for children and adolescents to address the other conditions resulting from HIV infection.� says Alan Guttmacher, MD, acting director of the National Institute of Child Health and Human Development.
according to new HIV treatment guidelines issued by the U.S. Department of Health & Human Services. The new guidelines recommend use of Isentress in combination therapy with two nucleoside reverse transcriptase inhibitors: tenofovir and emtricitabine.
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Merck has decided not to seek FDA approval of experimental HIV drug vicriviroc, a CCR5 coantagonist. The drug “did not meet the primary efficacy endpoint� in two late-stage trials, according to Merck. Going forward, Merck says it will provide vicriviroc to treatment-experienced participants who benefited from it, and it
will continue to study the drug in treatmentnaive patients.
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Based on 96-week study data, the U.S. Department of Health and Human Services now recommends once-daily ritonavir-boosted Prezista in combination with tenofovir/emtricitabine as one of two preferred protease inhibitor regimens for treatment-naive patients.
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Results of an AIDS Clinical Trials Group study indicate that a tenofoviremtricitabine combination works better in treatment-naive HIVers than
abacavir plus lamivudine. Both combinations reduced the amount of HIV in most study participants, but among individuals who had high viral loads (100,000 or higher) at entry into the study, regimens containing abacavir/ lamivudine were significantly less effective at controlling HIV.
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New research based on a novel mathematical model predicts a wave of drug-resistant HIV strains will emerge in San Francisco within the next five years, according to results published in the journal Science. These strains could prove disastrous by hindering control of the HIV pandemic.
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B Y
CO RE Y
SAUCIE R
PERFECTLY FLAWED
HOSPITALS AND DOCTORS AND DEATH, OH MY
ADAM GAULT/DIGITAL VISION/GE T T Y IMAGES
For the ďŹ rst time in 10 years Saucier remembers what it means to be dying of HIV—and the unpleasant memory reminds him that he can’t live in relaxed mode anymore my t-cell count isn’t a mere 116. I don’t have a dangerously high fever. I’m not ďŹ ghting back nausea. My skin isn’t red, inamed, and trying to tear itself from my body. I’m not weak and listless with sharp muscle pains. And I haven’t been wrestling death in a hospital bed for the past ďŹ ve days, crying and praying and only seconds away from histrionics. This is not the story I have to tell—at least not this week. But guess what happened last week? Remember that tooth (see my last article)? It tried to kill me! Last week I was quickly and unapologetically reminded of what it means to be HIV-positive. I know we don’t like to talk about it, especially in the age of onepill-a-day treatment and vibrant and healthy living, but HIV is a disease. It makes us acutely vulnerable to infection, and if circumstances get out of control, we can die! Yes, even of a benign broken tooth. To all of you who are newly infected, scared, and needing to be comforted—who think that talking about the possibility of death and long-term complications and hospital stays and the aching feeling of being alone and the constant reminder that every moment of every day this disease is trying to take you out is
harsh—I would say, “Yup! You’re right! It is harsh! Deal with it.â€? Since you were man or woman enough to bend over or open your legs without a condom, I ďŹ gure you are ready to hear the truth. I’ll be nicer next time (once my mouth stops hurting), but in the meantime, here’s a bit of “gentleâ€? advice: Take care of your shit! I let an infection fester in my mouth for two years because a doctor told me it was OK. And it was. Until he pulled my tooth. Then with all the stu going on with my body—including the hep C treatment, the multiple medications being ďŹ ltered through my liver, and another doctor deciding he would give me an antibiotic that I’d told him I was allergic to—my poor little antibodies gave up after trying their very best, God bless them! And within 45 minutes I was in a quarantined hospital room (yes, they still do that) with a slew of doctors fumbling about trying to save my life. I’d forgotten that I was sick. I’d become too comfortable and let too many people tell me I could handle something that I couldn’t. So what that they were doctors! The ďŹ ght against this disease is our—mine and yours—sole responsibility. And I’ve been lax. I have a great relationship with my primary care doctor; we work
together perfectly, and I trust him immensely. But when I wound up in the hospital and had seven new doctors asking me questions about medications, infections, medical history, and obscure references to hemoglobin levels, I didn’t have the answers. I expected them to know, and they didn’t. And it almost killed me. It is my responsibility to know the best treatment, the newest studies, and what’s going on in my cute little immunocompromised body. Because regardless of what we try to pretend—and not disclose and hide with a new pair of Diesel underwear—the truth is that if we don’t protect ourselves, intellectually, spiritually, and medically, by knowing what we need to know to make active and timely choices, this immunodeďŹ ciency virus will take us out! And I ain’t going down without a ďŹ ght!
Saucier is a writer, blogger, and performance artist based in Los Angeles. Find more of his writing online via our website.
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ASK & TELL
York City, joined the gay social networking site Connexion.org six years ago he found that although users could create discussion groups, none existed speciďŹ cally for HIVpositive men. At that time, he says, there were few online venues where HIVers could interact with and support each other. So Flores drew on his ďŹ ve years of sobriety, long-term HIV infection, and social-work training to establish the site’s Positive Support group, which he continues to moderate, contribute to, and—most important, he notes— learn from. —Bob Adams
tips+tools To learn more about the Positive Support Channel on Connexion. org, visit us at HIVPLUSmag.com
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W I TH
M A R K
F L O R E S
What are some of the most common topics addressed on the site?
There have been a lot of sociopolitical topics brought up, but the most prominent are around disclosure. A newcomer to the group recently posed the question, “Do you disclose up front in your online profile or personal ad when you’re looking for sex partners or dates?�There were a lot of varied responses and debate back and forth—from guys who believe it isn’t anyone’s business as long as they practice safer sex to those who disclose right away to quickly weed out those who ultimately will have a problem with their status. It also generated a lot of discussion of rejection and how to deal with it, which is another major issue for HIV-positive men. Have the issues being discussed changed over the few years? One
issue that has come up lately is among guys who have been positive for a long, long time and have lost long-term partners—not to HIV but to other things. They’re now in their 50s and 60s, many are lonely, and they’re faced with putting themselves back in the dating pool as someone living with HIV—or even trying to decide if they want to do that. It’s an interesting phenomenon, and one we’ll see a lot more of as HIV-positive men age. What have been some of the controversial or heated discussions?
One of the members and I got into sort of an argument over serosorting and participating in unprotected anal sex with others who are HIV-positive [see also “Assumed Riskâ€? on page 8]. My point was that it’s irresponsible to even discuss it as a viable option given what we know—and don’t know—about the virus. His side was that we ostracize those who want the “realâ€? feeling of sex, particularly since there’s [very little] risk of infecting anyone else [with another HIV strain]. It wasn’t a frivolous tĂŞte-Ă -tĂŞte; it ended up generating very sophisticated discussions on some very profound issues.
What did you learn in that back-and-forth? That I can
be a pompous ass. [Laughs] It’s actually been a very liberating experience for me to get involved in the discussions, share my opinions, and sometimes have my friends sort of check me and say, “Mark, you’re acting like an ass.� [Laughs] Ultimately, it’s allowed me to be not just a facilitator to the group but also a teacher and a student. [See also “Social Security,� our feature on the new generation providing a safe haven for HIVers online on page 30.]
“One of the members and I got into sort of an argument over serosorting and participating in unprotected anal sex with others who are HIV-positive.�
COURTESY OF MARK FLORES
When Mark Flores, a medication adherence and substance abuse counselor in New
Q& A
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