The Berlin Patient: New Hope for a Cure? / Lipo’s Last Stand / HIV Hipsters
H E A L T H + S P I R I T + C U L T U R E + L I F E
YOU’RE HAVING A BABY?! Great news! Plan the pregnancy right and doctors say there’s little reason your status will stand in the way.
MARCH/APRIL 2011 www.hivplusmag.com
PREZISTA IMPORTANT SAFETY INFORMATION AND INDICATION Talk to your healthcare ABOUT PREZISTA professional about the ® PREZISTA (darunavir) is a signs and symptoms of liver prescription medicine. It is one problems. These may include treatment option in the class of yellowing of your skin or whites HIV (human immunodeficiency of your eyes, dark (tea-colored) virus) medicines known as urine, pale-colored stools protease inhibitors. (bowel movements), nausea, PREZISTA is always taken with vomiting, loss of appetite, and at the same time as ritonavir or pain, aching or sensitivity on (Norvir®), in combination with other your right side below your ribs. HIV medicines for the treatment of • Skin rashes have been HIV infection in adults. PREZISTA reported in patients taking should also be taken with food. PREZISTA. In a small number • The use of other medicines active of patients, PREZISTA has against HIV in combination with been reported to cause PREZISTA/ritonavir (Norvir®) may a severe or life-threatening increase your ability to fight HIV. rash. Contact your healthcare Your healthcare professional will professional immediately if work with you to find the right you develop a rash. combination of HIV medicines • It is important that you remain Can PREZISTA be taken with under the care of your healthcare other medications? professional during treatment with Taking PREZISTA with certain PREZISTA medicines could cause serious and/or life-threatening side PREZISTA does not cure HIV effects or may result in loss of infection or AIDS, and does not its effectiveness. Do not take prevent passing HIV to others. PREZISTA if you are taking the following medicines: alfuzosin Please read Important Safety (Uroxatral®), dihydroergotamine Information below, and talk to (D.H.E.45®, Migranal®), your healthcare professional ergonovine, ergotamine (Wigraine®, to learn if PREZISTA is right Ergostat®, Cafergot®, Ergomar®), for you. methylergonovine, cisapride (Propulsid®), pimozide (Orap®), IMPORTANT SAFETY oral midazolam, triazolam (Halcion®), INFORMATION rifampin (Rifadin®, Rifater®, Rifamate®), sildenafil (Revatio®) What is the most important when used to treat pulmonary information I should know arterial hypertension, indinavir about PREZISTA? (Crixivan®), lopinavir/ritonavir • PREZISTA, together with (Kaletra®), saquinavir (Invirase®), Norvir®, has been observed lovastatin (Mevacor®, Altoprev®, in a small number of Advicor®), pravastatin (Pravachol®), patients to cause liver simvastatin (Zocor®, Simcor®, problems which may be life- Vytorin®), salmeterol (Serevent®), or threatening. Your healthcare products containing St. John’s wort professional should do blood tests prior to starting • Before taking PREZISTA, tell your combination treatment healthcare professional if you including PREZISTA. If you are taking sildenafil (Viagra®), have chronic hepatitis B or vardenafil (Levitra®), tadalafil C infection, your healthcare (Cialis®, Adcirca®), atorvastatin professional should check (Lipitor®), atorvastatin/amlodipine your blood tests more (Caduet®), rosuvastatin (Crestor®), often because you have or colchicine (Colcrys®). This an increased chance of is not a complete list of developing liver problems medicines. Be sure to tell
your healthcare professional about all the medicines you are taking or plan to take, including prescription and nonprescription medicines, vitamins, and herbal supplements • Tell your healthcare professional if you are taking estrogen-based contraceptives (birth control). PREZISTA might reduce the effectiveness of estrogen-based contraceptives. You must take additional precautions for birth control, such as condoms
the body’s immune response, enabling it to begin to fight infections that have been hidden. Patients may experience signs and symptoms of inflammation that can include swelling, tenderness, or redness • The most common side effects related to taking PREZISTA include diarrhea, nausea, rash, headache, stomach pain, and vomiting. Other important severe side effects such as inflammation of the liver or pancreas and increased blood fat levels have been reported.
• This is not a complete list of all possible side effects. If you What should I tell my doctor experience these or other side before I take PREZISTA? effects, talk to your healthcare professional. Do not stop taking • Before taking PREZISTA, tell your PREZISTA or any other medicines healthcare professional if you have without first talking to your any medical conditions, including healthcare professional allergy to sulfa medicines, diabetes, liver problems (including You are encouraged to report hepatitis B or C), or hemophilia negative side effects of • Tell your healthcare professional prescription drugs to the FDA. if you are pregnant or planning Visit www.fda.gov/medwatch, to become pregnant, or are or call 1-800-FDA-1088. breastfeeding Please refer to the ritonavir (Norvir®) - The effects of PREZISTA on pregnant women or their unborn Product Information (PI and PPI) for additional information on babies are not known. You and precautionary measures. your healthcare professional will need to decide if taking For adults taking HIV meds PREZISTA is right for you for the first time and for many - Do not breastfeed if you are adults who have taken HIV meds taking PREZISTA. You should in the past: PREZISTA 800 mg not breastfeed if you have (two 400-mg tablets) must be taken HIV because of the chance of at the same time with 100 mg passing HIV to your baby Norvir® once daily every day. PREZISTA must be taken with food. What are the possible side For some adults who have taken effects of PREZISTA? HIV meds in the past: PREZISTA 600 mg/Norvir® 100 mg • High blood sugar, diabetes or must be taken twice daily at the worsening of diabetes, and increased bleeding in people with same time every day with food. hemophilia have been reported in Your healthcare professional can determine which dose is right for you. patients taking protease inhibitor medicines, including PREZISTA Please see Important Patient • Changes in body fat have been Information on the next page seen in some patients taking HIV for more information, or visit medicines, including PREZISTA. www.PREZISTA.com. The cause and long-term health effects of these conditions are not If you or someone you know needs known at this time help paying for medicine, call 1-888-4PPA-NOW (1-888-477• As with other protease inhibitors, taking PREZISTA may strengthen 2669) or go to www.pparx.org.
www.PREZISTA.com Distributed by: Tibotec Therapeutics/Division of Centocor Ortho Biotech Products, L.P., Titusville, NJ 08560
©2011 Tibotec Therapeutics
01/11
28PRZDTC10035A
NEW
ONCEONC DAILY PREZISTA
NEWLY EXPANDED ONCE-DAILY DOSING FOR PREZISTA For adults who have not taken HIV medications before and NOW for many adults who have taken HIV medications in the past Once-daily PREZISTA 800 mg (two 400-mg tablets) must be taken with Norvir速 100 mg and food at the same time every day, as part of combination HIV therapy. Talk to your doctor about your HIV treatment options and ask if once-daily PREZISTA is right for you. Please read Important Safety Information on adjacent page.
www.PREZISTA.com Registered trademarks are the property of their respective owners.
TABLE OF CONTENTS MARCH / APRIL 2011
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STATUS SYMBOLS 6 SEX, LIES, AND VIDEOTAPE An HIV-positive porn perfomer accuses an industry-affiliated testing center of turning its back on him.
8 SCARE TACTICS How effective—and appropriate—are over-the-top HIV prevention campaigns?
9 TRENDSETTERS HIVster.com showcases young, fashionable urbanites who just happen to have HIV.
H-EYE-V 13 PEPFAR TACKLES HIV The United States and South Africa join forces on President Obama’s Emergency Plan for AIDS Relief.
HAART BEATS 40 MYSTERY MAN REVEALED The “Berlin Patient,” possibly the first person cured of HIV, steps forward.
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42 LIPO NO MORE A new drug promises to get rid of fat deposits around the stomach and liver.
43 BLOCKED UP A natural compound could stop HIV’s spread in the body—right where it begins.
43 IT’S IN THE GENES Genetic testing could help you sidestep some drugs’ nasty side effects.
COLUMNS
25 LIFE OF BRRYAN
44 MIND + MOOD
After a lifetime battling AIDS and fighting for his dignity, 19-year-old activist Brryan Jackson is not only surviving, he’s thriving.
It’s the perfect time to make positive changes in your life—and we’re not talking about organizing your closet.
28 4O WEEKS TO A HEALTHY BABY
46 PERFECTLY FLAWED
HIV-positive and want to have a baby? Proceed with caution and care.
34 MADE FOR A WOMAN New studies offer new lines of protection against infection and hint at ways to best tailor women’s access to treatment.
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With help from his pastor, our columnist experiences a snowy “come to Jesus” moment. COVER: Photographed by Eric Van Den Brulle/Getty Images
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The New 60 When psychotherapist Robert Levithan was first diagnosed with HIV, he couldn't picture life at 60, because he wasn't sure he’d ever see it. Now he’s celebrating life and seizing the moment as he reaches this milestone.
Not Above the Law A homeless man in Ohio. An Air Force sergeant. A German pop singer. As disparate as their lives are, they all have one thing in common: Each was charged with exposing others to HIV. We take a look at what protections HIVers have if they find themselves in legal trouble because of their status.
CAN’T FIND ISSUES? If you like the copy you are now reading but can’t find it at your physician’s office, pharmacy, or other organization, give the administrators our subscription info and let them know they can subscribe free of charge. Issues are also online at www. hivplusmag.com. WHAT’S YOUR STORY? Do you have an interesting story about yourself or someone you know that you want to share? You might be a candidate for a profile in one of our departments or another section. We want to hear from you, and we want to know what you’ve been up to. So e-mail us at mail@hivplusmag.com or write us at HIV Plus, 10990 Wilshire Blvd., Penthouse Suite, Los Angeles, CA 90024. We’ll even take faxes at (310) 806-4268.
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Derrick Burts preparing to come forward as “Patient Zeta” at a Los Angeles press conference in December.
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GABRIEL BOUYS/AFP/GE T T Y IMAGES
STATUS SYMBOLS
Sex, Lies, and Videotape A porn performer reveals he has HIV and accuses an industry-affiliated testing center of turning its back on him imagine standing in a room full of reporters and announcing that not only are you a porn star, but you’ve contracted HIV because of it. That’s exactly what Derrick Burts did last December in Los Angeles. Despite the rather intense circumstances of his press conference, the actor known as “Cameron Reid” in straight fi lms and “Derek Chambers” in gay movies spoke eloquently but passionately about the dangers of the pornography industry and how sexually transmitted infections like HIV are not taken seriously by porn’s major players—or by the clinics that cater to adult fi lm stars. The 24-year-old had been doing adult fi lms for only seven months when he tested positive in early October. Porn producers require straight performers to get regular HIV tests, and those producers peruse databases of porn-affi liated clinics that keep track of performers’ statuses. Many adult-fi lm performers in Los Angeles’s San Fernando Valley—the epicenter of the industry—utilize a handful of clinics, like the Adult Industry Medical Healthcare Foundation, where Burts tested positive. Burts says AIM staff were initially helpful after his diagnosis, offering him a follow-up test. But when rumors and then news stories spread about a porn performer with HIV (many referred to Burts as “Patient Zeta”), Burts says AIM became more focused on containing the story than assuring his health. “I’m not happy with the way things went down with the clinic, and I’m here to speak out so it doesn’t happen
to other performers,” Burts said at the press conference. AIM wouldn’t release Burts’s test results and urged him to stay silent about his HIV status, all because of the clinic’s close ties to porn producers, Burts claims. AIM is a nonprofit and relies on donations to operate. “At that point, my main concern was getting proper care and seeing a physician,” Burts tells HIV Plus. “They promised over and over that it would happen.” But for two months, he says, he waited for referrals that didn’t come. After growing concerned about what he saw as AIM’s lax approach to his health care, Burts called his agent, who told him to seek care and put him in contact with a representative from the AIDS Healthcare Foundation. Almost instantly, AHF connected Burts with a doctor and helped him enroll in the AIDS Drug Assistance Program in Florida, where he spends most of his time. Speaking with AHF representatives, who already considered porn industry clinics like AIM to be deficient in providing HIV care, Burts decided to go public with his identity and speak out about his experiences at the December 8 press conference. “This clinic claims to look out for the best interest of performers—this is false,” Burts says. “So I decided something needed to be done for the safety of others.” The day after the press conference, AIM abruptly shut down. The reason given by Los Angeles County officials
was that the clinic had been operating without a license since April and that a recent license application had been denied due to incomplete paperwork. While AIM’s closure appears to bolster Burts’s claim, Michael Weinstein, president of the AIDS Healthcare Foundation, says it’s simply a coincidence that AIM closed just after Burts went public. AIM’s head of administration didn’t return requests for comment, but on January 18 a receptionist said the clinic would reopen that week. Weinstein sees the media attention given to Burts’s story and its repercussions as promising steps in his organization’s efforts at making porn industry leaders more accountable for the health of their performers. Not only does Weinstein want clinics like AIM to provide more reliable care for those who test positive, he also wants condom use enforced on all porn sets (California law requires condoms, but Burts says straight sets rarely provide them, while gay producers regularly adhere to the rule). “The next big chapter will be California’s Division of Occupational Safety and Health developing regulations [for condom enforcement] specific to the industry,” Weinstein says, noting that Cal OSHA is currently working on those guidelines. “There’s a lawsuit against AIM. There’s a report due in a couple of weeks from the Los Angeles city attorney on denying fi lm permits [for some porn shoots]. We’ve made a lot of progress and passed the tipping point.” ✜
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STATUS SYMBOLS
Southern Discomfort Most states south of the Mason-Dixon Line have laws specifically criminalizing the transmission of HIV. Here’s a breakdown: ALABAMA Knowingly transmitting HIV: Misdemeanor ARKANSAS Knowingly transmitting HIV: Felony Withholding HIV-positive status from doctor or dentist: Misdemeanor FLORIDA HIV-infected person not informing sex partner of status, donating blood or tissue, performing sex work, or procuring a prostitute: Felony
A controversial HIV prevention campaign raises the question of what type of messages are appropriate— and effective the new york city health department in December launched “It’s Never Just HIV,” televised public service announcements depicting men suffering the effects of HIV-related complications—the ads included images of snapping bones, shrinking brains, and bloody flesh as a reminder of the increased risk of bone loss, dementia, and anal cancer. The campaign was immediately accused of demonizing people with HIV, especially gay men (a same-sex couple is featured in a hospital room). The Gay and Lesbian Alliance Against Defamation and New York–based Gay Men’s Health Crisis were among the first to decry the PSAs, issuing a joint statement in which GLAAD president Jarrett Barrios lambasted the spots’ “tabloid-like fear tactics” and GMHC executive director Marjorie Hill added that “portraying gay and bisexual men as dispensing diseases is counterproductive.” GMHC community health director Francisco Roque elaborates to HIV Plus, “When gay men feel more positive about their sexuality, they will make healthier choices.” Meanwhile, the National Association of People With AIDS has noted that HIV-positive people have a “moderately higher longterm risk” of the conditions portrayed, leading the group’s president, Frank Oldham, to call the ads a “true but one-sided” portrayal that could “promote stigma.” New York’s HIV planning council urged Mayor Michael Bloomberg to have the health department withdraw the PSAs from television and YouTube, where they are also available.
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Health department officials say the campaign is designed to combat complacency about HIV. Men who have sex with men account for about 44% of newly diagnosed HIV infections in New York City each year, according to the department. The campaign has some high-profi le defenders, including writer and veteran AIDS activist Larry Kramer. In an e-mail to friends, he said the ads are honest: “HIV is scary, and all attempts to curtail it via lily-livered niceynicey ‘prevention’ tactics have failed.” But will the campaign’s tactics produce success? Both supporters and critics cite research on prevention messages to support their positions, while some AIDS services providers who have experience with similarly controversial campaigns are skeptical. “I doubt it will actually get the job done,” Michael Weinstein, president of the AIDS Healthcare Foundation, tells HIV Plus. This type of prevention message from a government entity might come across as moralizing and cause people to tune it out, he says. He notes that AHF’s “HIV—Not Fabulous” ad campaign, launched in 2005 and showing people with HIV suffering nasty side effects of treatment, “was controversial, and we wound up not continuing it.” At public meetings, campaign objectors made compelling arguments, he says, showing there’s a fine line between warning that HIV is difficult and stigmatizing those with it. “You’re walking a tightrope,” he says. AHF’s current approach, he says, is encouraging people to be tested, as many people who have HIV are not aware of the fact and may spread the virus without realizing it. Weinstein also sees a need for greater access to condoms and creating a “culture of prevention” among gay men through communitybased groups.
KENTUCKY Donating tissue or committing acts of prostitution when knowingly HIVpositive: Felony LOUISIANA Knowingly exposing another (including a police officer) to HIV: Not specified as felony, but carries a possible jail sentence of up to 10 years MISSISSIPPI Knowingly exposing another (including a correctional employee) to HIV: Felony NORTH CAROLINA HIV-infected person having intercourse without a condom, failing to inform partner, sharing needles, or donating blood, tissue, or breast milk: Misdemeanor SOUTH CAROLINA HIV-infected person failing to inform sex partner of status, committing acts of prostitution, donating blood or tissue, or sharing needles: Misdemeanor TENNESSEE HIV-infected person failing to inform sex partner of their status, donating blood or tissue, or sharing needles: Felony; repeat offenses may result in quarantine or isolation HIV-infected person performing sex work: Felony TEXAS No specific statute, but the state has charged HIV-positive people with aggravated assault or attempted murder for exposing others to the virus VIRGINIA Having sex with intent to transmit HIV or donating blood or tissue while HIVpositive: Felony HIV-infected person not informing sex partner of their status: Misdemeanor WEST VIRGINIA Knowingly exposing a person to an STD: Penalties of up to $100 fine and 30 days in jail
VIDEO STILL: COURTESY THE NEW YORK CIT Y DEPARTMENT OF HEALTH
Scare Tactics
GEORGIA HIV-infected person withholding status when engaging in sex, sharing needles, donating blood or tissue, prostituting, or intentionally exposing a peace or corrections officer to HIV: Felony
Trendsetters A new website shines a light on young, fashionable urbanites who just happen to have HIV smart, cool, young, and HIV-positive: These words don’t often appear in the same sentence. But Brad Crelia and Jesse James Kendall are proving these attributes aren’t mutually exclusive with their new website, HIVster.com, which is geared toward that mostly untapped audience. The website—whose name is a combination of HIV and hipster—is a biting take on news and culture, with a healthy dose of interviews and personal stories on HIV. Lifelong friends Crelia and Kendall are both gay and both 25, but like so many people in Generation Y, they don’t want their sexual orientation defining them or their website. “Our stories are queer-centric, but we’re not just reaching out to gay people. We’re trying to build a site that’s accessible to everyone,” says Crelia, speaking from his home in Seattle. The men started the site in October, six months after Crelia tested positive. After chronicling his diagnosis in a magazine article, he knew he wanted to write regularly about life with HIV. “Jesse and I searched the Web and couldn’t find any HIV sites that fit our demographic,” Crelia says. Their answer was to start their own, with Crelia oversee-
ing the editorial content and Kendall doing the marketing for the site. HIVster recently featured an interview with Portland, Ore., mayor Sam Adams, who spoke with Crelia about being gay, working to stay HIV-negative, and his city’s AIDS outreach. There are also posts about fashion (Kendall talks up designer Marc Jacobs), music (Swedish pop star Robyn is featured heavily), and the gay-inclusive nominations for this year’s Golden Globe awards. The fluffier posts are balanced out with a microsite on health, which answers frequently asked questions on STDs, symptoms, treatment, and prevention. “There’s a big disconnect between the younger population and the health information getting to them,” Kendall says. Aside from HIV, Crelia has hereditary coproporphyria, a genetic condition that causes severe abdominal pain. As he battles both diseases, the site’s focus will tilt more toward health and personal stories of courage. “A lot of people with HIV don’t just have one disease, and it can be a struggle to know how to juggle it all,” Crelia says. “I want to write about all the things that are to come with my disease, and I really hope it helps people.”
Suite Heart Next time you’re heading out of town, check out the Kimpton Hotels. This San Francisco-based hotelier, which has inns and restaurants in 23 cities across the country, is incredibly dedicated to showing its appreciation to its socially conscious clientele. Reserve your room through the Kimpton Red Ribbon Campaign (search for link through Google) and get a 15% discount off the advertised rate, with Kimpton donating $10 to a local HIV/AIDS charity for every night of your stay. Last year the company donated $150,000 through the program (nearly doubling the 2009 amount). That means 15,000 nights were booked by people who care about making a difference. Sounds like the kind of crowd any of us would like to stay with. KimptonHotels.com These 19 charities benefited from the Kimpton Red Ribbon Campaign last year: · ActionAIDS (Philadelphia) · AIDS Project Los Angeles · AIDS Walk San Diego · CARE Resource (South Florida) · Cascade AIDS Project (Portland, Ore.) · Chase Brexton Health Services (Baltimore) · Colorado AIDS Project (Denver) · EdgeAlliance (Chicago) · Fenway Health (Boston) · Gay Men’s Health Crisis (New York City) · HERO for Children (Atlanta) · Lifelong AIDS Alliance (Seattle) · National AIDS/HIV Nightline · Northern Virginia AIDS Ministry (Falls Church, Va.) · Phoenix Children’s Hospital—Bill Holt Clinic · Resource Center Dallas · Richmond/Ermet AIDS Foundation (San Francisco) · Utah AIDS Foundation (Salt Lake City) · Whitman-Walker Clinic (Washington, D.C.)
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• 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.
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.
I’ve got the fight in me.
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 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. 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.
“
EVEN WITH HIV,
I AM UNDEFEATED.” “ When I was diagnosed with HIV, I was worried that the disease would take over my life. But over time, I realized I could fight back. By working on my body, my mind, and my spirit, I became stronger than I ever imagined. My meds are a big help. Last year, I started taking EPZICOM as part of my combination therapy. My doctor told me that, when used with other medications, it’s been shown to help keep HIV from making more copies of itself and infecting healthy cells. 68% of patients taking a regimen with EPZICOM had their viral load become undetectable in less than one year. In addition, patients saw a 93% increase in their T-cell counts.* Looks like EPZICOM is working well. My viral load is undetectable. And me? I just keep fighting on.” †
†
Not an actual patient testimonial. Based on collection of real patient experiences. Individual results may vary.
* 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 48 weeks, patients saw a median increase of 201 cells/mm3 in their T-cell count.
Ask your healthcare provider if EPZICOM is right for you. Learn more at www.EpzicomForYou.com
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 ©2010 ViiV Healthcare Group of Companies All rights reserved. Printed in USA.
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▲ Secretary of State Hillary Clinton (right) and South African foreign minister Maite Nkoana-Mashabane meet the press in Washington, D.C., on December 14 after signing the U.S.-South African PEPFAR (President’s Emergency Plan for AIDS Relief) Partnership Framework Agreement. PEPFAR is the U.S. government’s effort to address HIV in other countries.
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W Kenyan grandmother Beatrice watches schoolchildren perform a skit on December 2. Beatrice is one of many African women associated with the Nyanya Project, an American organization that trains grandmothers to care and support their grandchildren orphaned by AIDS. M A R C H /A P R I L 2 0 1 1 H I V P L U S
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▲ Protesters converge on New York’s Metropolitan Museum of Art December 19 after a work by the late HIV-positive artist David Wojnarowicz was pulled from Washington, D.C.’s National Portrait Gallery. Responding to complaints from Catholic groups, the gallery removed a video of Wojnarowicz’s that showed ants on a crucifi x. X An elegant scene was set for the Design Industries Foundation Fighting AIDS Be Present Auction at Sotheby’s December 6 in New York City.
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X Carla Bruni-Sarkozy, the wife of French president Nicolas Sarkozy, visits a center for children orphaned by AIDS in New Delhi December 6. A global AIDS ambassador for the Swiss-based Global Fund to Fight AIDS, Bruni-Sarkozy says she took on the role because her brother died of AIDS-related complications. 18 | H I V P L U S M A R C H /A P R I L 2 0 1 1
G TTY GE
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▲ (top) Celebrities including Miss USA Rima Fakih and American Idol finalist Crystal Bowersox (in red scarf) attend CitySights NY’s 2010 Holiday Joy Toy Drive at the Children’s AIDS Society December 13. (above) After appearing on a Monaco radio program November 27, Princess Stephanie of Monaco (right) and French radio host Stéphane Bern pose with their AIDS ribbons in advance of World AIDS Day.
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Hey, have you heard the news? For eligible patients, Merck covers up to $400 on out-of-pocket costs, for each of up to 12 prescriptions.
Introducing the Savings Coupona for ISENTRESS. Eligibility restrictions, terms, and conditions apply.a To ďŹ nd out more, call 1-866-350-9232 or visit isentress.com. 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. a For
eligible privately insured patients. Not valid for residents of Massachusetts. Restrictions apply. Please see full Terms and Conditions on isentress.com.
Copyright Š 2011 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. 21052655(22)-03/11-ISN-CON
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, side effects included nausea, headache, tiredness, weakness, trouble sleeping, stomach pain, dizziness, depression, and suicidal thoughts and actions. Rash occurred more often in patients taking ISENTRESS and darunavir together than with either drug separately, but was generally mild.
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 96 weeks, patients being treated with HIV medication for the first time who took ISENTRESS plus Truvada: Had a low rate of side effects — The most common side effect of moderate to severe intensity (that interfered with or kept patients from performing daily activities) was trouble sleeping — This side effect occurred more often in patients taking ISENTRESS plus Truvada (4%) versus Sustiva plus Truvada (3%) Experienced less effect on LDL cholesterol (“bad” cholesterol) — Cholesterol increased an average of 7 mg/dL with ISENTRESS plus Truvada versus 21 mg/dL with Sustiva plus Truvada
Ask your doctor about ISENTRESS. Not sure where to start? Visit isentress.com/questions
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.
Copyright © 2011 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. 21052250(46)(110)-03/11-ISN-CON Sustiva is a registered trademark of Bristol-Myers Squibb Truvada is a registered trademark of Gilead Sciences, Inc.
After a childhood spent battling AIDS and fighting for his dignity, Brryan Jackson is not only surviving, he’s thriving
BRENDAN HOFFMAN/GE T T Y IMAGES FOR NICKELODEON
BY NEAL BROVERMAN
rryan jackson is no victim. Even though the 19-year-old’s early life reads like a Greek tragedy, he’s managed to turn a horror story into an inspirational tale. In 1992, at only 11 months old, Jackson was intentionally infected with HIV-tainted blood by his lab technician father. The father was seeking revenge on Jackson’s mother for having the baby, and he figured he wouldn’t have to pay child support for a dead child. But Jackson lived—even after developing AIDS at 5. It was around this time that the truth about the crime came to light, and Jackson’s father was eventually sentenced to life in prison. Jackson’s not had an easy go of it. His initial daily drug regimen of two dozen pills and injections caused him to lose much of his hearing. And, in turn, his health made him a target of ridicule by his peers—both in and outside of school. But things started to turn around for Jackson at age 12 in 2004, when his mother, Jennifer, enrolled him in Camp Kindle, a nocost Nebraska summer camp (now with an additional California site) created in 1998 specifically for HIV-positive youths and children otherwise deeply affected by AIDS. “The experience gave me confidence,” Jackson says today from his home in St. Charles, Mo. “I became more aware of my surroundings and of how I blessed I am.” Besides archery and swimming, Camp Kindle includes activities to boost the selfesteem of kids with HIV. Attending the camp over several years left such a positive mark on Jackson that he eventually became a counselor. “I feel lucky to be part of something that’s helping eliminate the stigma that is part of this virus,” he says. At 15, a newly emboldened Jackson met Robert Reed, who worked for Missouri’s AIDS Drug Assistance Program. At Reed’s urging, Jackson traveled to Washington, D.C., as part of a group of AIDS activists lobbying senators and congressmen for more ADAP funding. “What really was surprising is that many congressmen still have stigmas about the virus,” says Jackson, who’s returned to Washington several times to lobby for
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ADAPs. “Many still think HIV is only a gay disease or a black disease. Then they meet someone like me and see a different viewpoint. Even if they didn’t support the ADAP bill, [the lobbying] helps them come to a better understanding of HIV.” Inspired by his trips to Washington and his role-model status at Camp Kindle, Jackson started his own nonprofit, Hope Is Vital, in 2009. The organization works to empower those with HIV and break the stereotypes associated with the disease.
To accomplish that mission, Jackson has become a polished public speaker, hitting high school and college campuses and telling his story to rapt student audiences. Jackson’s work was recently honored with a TeenNick Halo Award, which recognizes community service by adolescents, and Hope Is Vital was awarded a check for $10,000. It’s no longer difficult to tell the story of his childhood to strangers, Jackson says. He’s “more focused on spreading the word”
PAUL MORIGI/GE T T Y IMAGES FOR NICKELODEON
Jackson speaks with Rep. Todd Akin (R-Mo.) about the need for ADAPs in December 2009.
“What really was surprising is that many congressmen still have stigmas about the virus,” Jackson says. “Many still think HIV is only a gay disease or a black disease. Then they meet someone like me and see a different viewpoint.”
about HIV prevention than he is worried about what people will think of him and his family. Jackson’s also worked long and hard to forgive his father. Though he’s never spoken to his dad, he’s says it’s not impossible that they could talk at some point. “It’s a smart thing to do, it’s the charitable thing to do—to forgive,” he says. “Why hold a grudge when it’s only hurting you?” That positive and forward-looking temperament—which Jackson partially
credits to his Christian faith—has helped him endure. The sense of purpose—which he’s found with his activism—has made him happy. “It takes as much energy to look at something negatively as it does positively,” says Jackson, who is now studying business and communications at a St. Charles community college. “Do you want to be part of the solution or the problem? You have to ask yourself, How do you want to expend your energy?” ✜
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HIV-positive and want to have a baby? Proceed with caution and care BY MICHELLE GARCIA
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HEN ALICE STEK started delivering the babies of HIVpositive mothers in 1991, hers was a field where life left the world as frequently as it entered. “We had many infected babies, and mothers who were dying,” says Stek, MD, the director of perinatal services at the Maternal-Child Adolescent HIV Program at Los Angeles County–University of Southern California Medical Center. “And so many of these mothers died while their children were young. We even had some children dying of AIDS early in their lives.” As medications for people with HIV have improved, there also has been progress in helping HIVers safely bring life into the world. Stek and her team are approaching 15 years of healthy births, and her facility has delivered dozens of HIV-negative babies to HIV-positive mothers. Just 20 miles south in Long Beach, the Bickerstaff Pediatric Family Center at Miller Children’s Hospital in January celebrated its 400th baby born in 15 consecutive years without the virus to an HIV-positive mother. Audra Deveikis, MD, the center’s medical director, credits the advances in HIV medication as well as the center’s indepth prenatal and postnatal care program that ensures pregnant HIVers get to the hospital for regular screening and treatment. Bickerstaff Pediatric also provides other services such as social work, housing, and regular transportation to and from the hospital. These programs, and others like them across the country, are helping children of HIV-positive mothers grow up to live healthy, HIV-free lives. During the peak of motherto-child transmission in 1992, one fourth of babies born to positive mothers were positive as well. Now, with advanced care options, highly active antiretroviral therapy (HAART), and better management and understanding of the virus, fewer than 2% of births among HIV-positive women yield an infected baby. Mothers and doctors, albeit cautious, can have high expectations for a healthy, safe pregnancy and birth. “Even one transmission is one too many,” Deveikis says. Profiled in the following pages are two women who, despite their HIV-positive status, gave birth to HIV-negative sons. They’ve asked that only their first names be used.
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Planning a pregnancy was a risky endeavor for HIVers decades ago. But today women with HIV who stay on top of treatment and closely monitor their viral load have every reason to expect a healthy bundle of joy in nine months.
BEFORE YOU GET PREGNANT: • First, consult your doctor before trying to conceive. “You should seek an obstetrician who specializes in HIV care and preconception counseling,” says Alice Stek, MD, director of perinatal services at the MaternalChild Adolescent HIV Program at Los Angeles County–University of Southern California Medical Center. “A lot of obstetricians may not have the knowledge to properly care for a woman with HIV who is trying to conceive and care for a child, and a lot of HIV centers or clinics don’t deal with pregnancy enough to know all of the proper care.” An obstetrician who has a strong knowledge of HIV can correctly evaluate whether the woman needs to be on medication prior to pregnancy; whether she should wait until she’s pregnant to change, start, or stop medication; and which drugs are safe to take during pregnancy. • Stek recommends would-be mothers plan on spacing pregnancies at least two years apart to prevent any complications or premature births that might occur with the second child. DURING PREGNANCY: • Like all expectant mothers, pregnant women with HIV should stop drinking, smoking, and using narcotics, and should avoid excessive amounts of caffeine immediately after conception. • Stek recommends that women take extra folic acid supplements, in addition to any folic acid that may be in prenatal vitamin packs. • Conversely, she says, avoid taking too much vitamin A. Though some
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doctors recommend high doses of vitamin A for HIV-positive women, Stek says it’s the one vitamin that could lead to birth complications if more than the standard 5,000 milligrams are taken per day. “Just because it’s a vitamin doesn’t mean it’s harmless,” she says.
WHILE IN LABOR: • If a woman is on highly active antiretroviral therapy (HAART), there is not much need for a cesarean birth, says Audra Deveikis, MD, of the Bickerstaff Pediatric Family Center at Miller Children’s Hospital in Long Beach, Calif. Once doctors found out that HAART reduced the mother-to-child transmission rate by 70%, the need for cesarean births for HIV-positive mothers diminished. • An IV drip of AZT is administered to the woman as a way to pre-load the baby with the drug to prevent transmission during labor. AFTER THE BIRTH: • Breast-feeding is not recommended for HIV-positive women. If an HIVpositive woman does breast-feed, she puts her child at a 14% risk for transmission. “In this country,” Stek says, “we have access to clean water and a reliable supply of formula. [HIVpositive mothers breast-feeding] is just not a good idea.” She also advises caution when considering whether to use a breast milk bank. “I would be worried about that, unless it’s well regulated and you know the donors of the milk are healthy.” • After the baby is born, he or she will be subjected to several tests to ensure there was no HIV transmission. “Even if the mother’s blood markers are good at the time of delivery, it’s not a guarantee that the baby does not have the virus,” Deveikis says. Her center tests babies for HIV at the one-day, one-week, one-month, twomonth, and four-month marks.
Like many couples before they exchange wedding vows, Kate and her husband took blood tests; theirs indicated a clean bill of health. The tests were especially important to the couple as they wanted to have children right away. It only took a few months for Kate to get pregnant in 2007. She then went back for a blood test and found out she was HIV-positive. She got the news while she was at work. “The other women in my office heard how upset I was, so they rushed over to comfort me,” she says. “They asked me what was wrong, and honestly, I didn’t know what to say. I was in such shock that I told them the truth.” It turned out that both Kate and her husband had HIV. They are not completely sure who gave the virus to whom, or when it happened, but their theory is that her husband was the first to be infected. “I was not promiscuous, I never used needles,” she says, “but my husband led a little bit of a party lifestyle—he was more promiscuous.” While she says she confided in her parents and grandparents for strength and support, her pregnancy was still difficult emotionally and physically. “I simply prayed. A lot. I was so scared,” she says. “I cried, and I prayed every single day.” In addition to her regular obstetriciangynecologist, Kate began seeing an ob-gyn who specialized in high-risk pregnancies. At first, she went in weekly for monitoring, but in the last few weeks of her pregnancy she spent as many as three days per week in the hospital. Starting in her second trimester Kate was given large pills, which caused dizziness to the point where she had to ask her husband to drive her to work and to the grocery store. She even started traveling with an extra set of clothes as a precaution, since she read that her pills could also cause incontinence. “I had read that the side effects of my pills were explosive diarrhea,” she says, laughing. “Fortunately, I didn’t need the extra outfit, but it was very scary. You’re reading every little thing you can fi nd about your disease and the drugs you’re taking—you never know.” By the time delivery day came, Kate was completely prepared. She says aside from the fact that she opted to have a cesarean section and that she had to have an AZT drip during labor to protect her son, she
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WHAT TO EXPECT
KATE, 30, PARALEGAL
felt like any other woman giving birth to her first baby and was treated as such in the delivery room. For the first six weeks after the birth, Kate had to administer AZT in drop form to her newborn son every six hours to make sure he didn’t contract the virus. Luckily, she says, he liked the taste. “I was basically fine after giving birth, but I felt such guilt because I had to give him drugs,” she says. Tests were also administered. “My son was tested at birth and at two months, four months, and at six months,” she says. “I was so happy every single time it came back negative. You have to do work to make sure your baby is healthy, but it can be done as long as you stay on your regimen.” Kate is now able to look at life with gratitude, and she writes about her experiences with the virus at GirlLikeMe.org, a group blog coordinated by the Well Project. If anything, she says, the fact that she and her husband are living with HIV has helped her enjoy life more, all while keeping up at work, paying bills, and scouting out the right preschool for their son, who is now 3 years old. “When other people are frazzled and busy, and don’t have time to take in everything, I think I’m able to open up and enjoy more,” Kate says. “I thank God that I have every day.”
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LAVERA, 37, YOUTH COUNSELOR During a 2005 trip to Nigeria when she was about 16 weeks’ pregnant with her second child, LaVera couldn’t ignore her fatigue and enduring cold, so she went to a doctor. After two weeks in a hospital bed, she was told she’d have to return home to Los Angeles to continue treatment. As soon as she got back, she was admitted to another hospital, where she learned she was HIVpositive. “I was shocked,” she says. “I was expecting to hear there were complications with my pregnancy, but not that I had HIV. I was worried about my baby, I did not know what to expect. And I did not want people to find out or to feel like they didn’t want anything to do with me, so I just kept it a secret. I didn’t talk about it to anyone.” Initially, LaVera disclosed her status only to one close friend and to her doctors. She didn’t even want to tell her husband, a Nigerian native, who was in Africa when
LaVera learned her status. She decided to wait until he returned to the States to share the news. “I told him I was positive with an IV drip in my arm,” LaVera says. “He hadn’t been here for 48 hours. He didn’t yell and scream, but it was kind of scary for him on the inside. For a long time I had to understand that where he’s from, being HIV-positive is a death sentence. People will stop buying things from you if you’re a business owner. If you have any social status, your whole family will lose everything if it gets out that a member of the family has HIV.” LaVera carefully planned and monitored the remainder of her pregnancy with a doctor who she says helped ease her worries and got her through the tough times. The doctor especially helped her understand her condition so she was better able to help her HIV-negative husband deal with her status. “My doctor is really good at educating,” LaVera says. “She’s not one to just give you your meds and get rid of you. She talked to me, she explained so much, and she just kept reassuring me that there was less than 2% of a chance that my baby was going to be infected. Letting time go by and her explaining the protocol was what really got me through the fear of having HIV and being pregnant.” Since giving birth to D.J., now 5, LaVera has become vocal not only at her job but at home. She signed up for a class on HIV basics with her husband to allay his fears about the virus. She also talks to her sons, D.J. and 16-year-old James, about being healthy and taking care of themselves. Neither of them is aware of his mother’s status, but LaVera knows that the time is coming soon when she must tell her oldest. She says being an HIV-positive mother makes her more aware of certain aspects of health and safety that other mothers aren’t necessarily thinking about. One recent incident with D.J. at school, in which he bit another boy in self-defense, led to a mother-son talk. “I had to tell him that when he bites people, he leaves himself open to being hurt,” she says. “He bit him to the point where he almost drew blood, which could lead to him getting hepatitis or something like that. It’s not just sex where parents have to stress safety, but we have to tell our children to protect themselves in other ways too.” ✜
AN HIV BABY When an expectant mother with HIV doesn’t seek treatment during pregnancy or is unaware that she even has the virus, the chances of transmitting HIV to her child run as high as 50%, according to Alice Stek, MD, director of perinatal services at the Maternal-Child Adolescent HIV Program at the Los Angeles County–University of Southern California Medical Center. But even with all of the care in the world, a woman with HIV still runs a very small risk of transmitting the virus to her child during pregnancy, labor, and delivery, or breast-feeding. Transmission isn’t the end of the world, though. Stek recommends that parents immediately find a pediatrician who specializes in treating children with HIV or AIDS. This is key because it’s crucial to make sure the dosage of HIV meds is right for children’s developing bodies. From there, the doctor will be able to provide a schedule of ageappropriate vaccines, such as for mumps and chickenpox, adjusted from the standard schedule to accommodate an HIV-positive child’s more fragile immune system. Children with HIV require different forms of medication as well. Easily consumed powders and syrups are administered to children in place of the tough-toswallow pills meant for adults. Breaking down larger pills designed for adults can lead to incorrect dosage and is therefore recommended only as a last resort.
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Made for a
WOMAN New studies offer new lines of protection against infection and hint at ways to best tailor women’s access to treatment By WILLIAM McGUINNESS
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“This study has the potential to shape how future HIV studies should be conducted because it addressed head-on the social and economic barriers, such as lack of support, stigma, availability of child care, and lack of transportation.” —Kathleen Squires, MD, director of the Division of Infectious Diseases at Thomas Jefferson University
exciting step forward for HIV prevention,” says Kevin Fenton, MD, Ph.D., and director of the National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention. “While these findings will need to be confirmed by other research to meet requirements for licensure by FDA and other regulatory bodies throughout the world,” he adds, “they suggest that we could soon have a new method to help reduce the heavy toll of HIV among women around the world.” Community and world health activists are heartened because this gel gives women more control than other prevention methods. It can be difficult for women to persuade their partners to use condoms or remain monogamous. The results of a further tenofovir gel trial, involving several African countries, are expected in 2013. But Alan McCord, spokesman for San Francisco–based AIDS organization Project Inform, said American researchers won’t wait to probe for stateside benefits that address the needs of American women and men. U.S. researchers are also focusing on women who are already HIV-positive. The GRACE (Gender, Race, and Clinical Experience) study looked at North American women who have received treatment for HIV to see if they responded differently to their meds than men do. This study,
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in many ways, men’s and women’s health care is the same—many medications for HIV and related conditions have the same physiological effect on both sexes. But access to treatment and the social conditions that contribute to rates of infection are different for women than they are for men. And some of the reasons for the discrepancies are only now coming into focus. Factors like pregnancy affect whether women can take certain kinds of treatments for HIV. Taking care of children and access to transportation have a disproportionate effect on whether HIV-positive women can visit the doctor. Similarly, women’s ability to prevent infection is at least partly determined by their socioeconomic status and racial background, as evidenced by the fact that rates of infection for black women in the United States are a staggering 15 to 20 times higher than those for white women. To date, men’s access to treatment and care has been studied far more frequently than has women’s. But new approaches to treatment for HIV and AIDS are taking special note of women’s needs. The results of recent studies are now shedding new light on the need for women-specific approaches to preventing infection. Advocates and researchers alike are optimistic in view of a recent antiretroviral microbicide gel trial. The study of 889 sexually active women aged 18-40, conducted by the Centre for the AIDS Programme of Research in South Africa (CAPRISA), showed a 39% percent decrease overall in the likelihood of HIV infection for those who used the vaginal microbicide; those who used the gel most regularly (at least 80% of the time) cut their odds of infection by 54%. This marked the first successful trial of a microbicide. The microbicide’s active agent, tenofovir, has been an effective oral antiretroviral medication since it was approved by the Food and Drug Administration in 2001, but its use in a topical gel form to prevent infection is a new development. The gel is designed to protect against infection by preventing the virus from reproducing itself inside susceptible cells. Tenofovir gel is rapidly absorbed by cells in the genital tract, where exposure to the virus occurs, and stays there. The CAPRISA microbicide trial results are “an
BURKE/TRIOLO PRODUC TIONS
the largest of its kind to date, took special interest in women of color, a group traditionally underrepresented in clinical studies. The results, published in 2010, included revelations about the ways in which women maintain their levels of treatment—and how future trials can attract women. “GRACE has the potential to shape how future HIV studies should be conducted because it addressed head-on the social and economic barriers, such as lack of support, stigma, availability of child care, and lack of transportation, which often have prevented women and people of color from participating in HIV clinical studies and remaining in care,” says Kathleen Squires, MD, director of the Division of Infectious Diseases at Thomas Jefferson University and primary investigator in the GRACE study. Importantly, the results of the GRACE research suggest that when women, particularly women of color, get the help and support they need, they are more likely to connect with and stay in treatment. Women can get this assistance by seeking encouragement from friends and family, joining HIV/AIDS community groups, and sharing stories and concerns with other women who have HIV or AIDS. Brian Risley, who manages the treatment education program at AIDS Project Los Angeles, says study leaders increased participants’ access to transportation, child care, and counseling with both health professionals and other HIV-positive women. These factors, he said, made it easier to recruit and retain participants, and provided a benchmark for future studies. Risley adds that American women diagnosed with HIV can look forward to a new drug called rilpivirine, which is close to FDA approval. Rilpivirine will be used in combination
with two other medications in a once-per-day pill. Risley says it has fewer side effects than previous generations of nonnucleoside reverse transcriptase inhibitors, and in clinical trials, the drug has shown no adverse effects on fetal development. This makes it a better therapy for pregnant women than previous drug combinations that include the NNRTI Sustiva (efavirenz), which is not recommended for use during pregnancy. Risley is cautiously optimistic about treatment advances, noting the research and regulatory approvals required before new drugs are market-ready. Governmental bodies too are taking an interest in the racial and gender disparities that affect health. The U.S. Department of Health and Human Services’ Office of Minority Health last fall announced $16.2 million in grants to support efforts to eradicate disparities in health care among ethnic minorities. The money will go to states, territories, colleges and universities, organizations that serve Native American tribes, and community groups. Some $2.8 million of that money will go to social support groups that address minority families living with HIV or at high risk of infection, including those dealing with incarceration and substance abuse. Another $1.15 million was awarded to the Minority Community HIV/AIDS Partnership to reduce risky behavior among minority college students. “We’re living in extraordinary times with many opportunities to improve the nation’s health and ultimately achieve health equity,” said Howard K. Koh, MD, MPH, assistant secretary for health, in announcing the grants. “These grants will provide much needed support for a variety of programs that will improve health outcomes among minorities.” ✜
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HAART BEATS
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Mystery Man Revealed
Until recently, the “Berlin Patient” (not pictured here) has kept a low profile.
THOMAS BAR WICK
The “Berlin Patient,” the first person believed to be cured of HIV, steps forward the layer of mystery shrouding a breakthrough in HIV cure research lifted in December, when a man who doctors say was cured of HIV after a bone marrow transplant to treat his leukemia revealed his identity to the German magazine Stern. Timothy Ray Brown, an American citizen living in Germany and known until now only as the “Berlin Patient,” was diagnosed with HIV in 1995. He learned he had acute myeloid leukemia in 2006 at age 40, but an initial round of chemotherapy proved unsuccessful. Gero Hütter, a hematologist in Berlin, then proposed a bone marrow transplant using the stem cells of an HIV-resistant donor. Approximately 1 in 100 white Europeans, or 1% of that population, inherit from both parents a genetic mutation—lack of the CCR5 co-receptor, which HIV uses to enter CD4 cells—that prevents HIV infection. Weeks after the transplant in 2007, Brown showed no signs of HIV in his bloodstream. He suffered a leukemia relapse within a year and received another stem cell transplant, plus the additional chemotherapy and radiation treatment typically used to
prepare the body for the procedure. More than two years later, his bloodstream remains free of HIV even though he is not taking antiretroviral drugs. Hütter and others first published their findings in The New England Journal of Medicine in 2009. A followup report last December in the journal Blood concluded that the results strongly suggest a cure for HIV has been achieved in Brown’s case. While hailing the findings’ potential, experts caution that an HIV-positive leukemia patient represents an isolated case, and the extreme bone marrow transplant procedure poses life-threatening risks. Nearly a third of recipients do not survive the transplant, and for survivors, there are side effects: Brown developed a neurological disorder that affected his coordination, speech, and behavior, for which he received therapy. Nevertheless, Brown’s case could prove hopeful, possibly even helpful, to scientists by demonstrating that a cure for HIV is possible in principle. For instance, researchers plan to investigate how to suppress CCR5 through gene therapy, if not transplants. ✜
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HAART BEATS
Up in Smoke
Lipo No More A new drug promises to get rid of fat deposits as many as one third of people living with HIV who use antiretroviral drugs develop lipohypertrophy, a condition that occurs when abnormal fat grows around vital organs like the stomach and liver. To ease the situation for those who may have resorted to baggy T-shirts to hide their midsections, the Food and Drug Administration has approved the fi rst drug shown to help eliminate these growths, called Egrifta. The drug doesn’t promise to melt the pounds quickly or provide an energy boost like an over-the-counter diet drug, but can produce rather dramatic results over time. Developed by Canadian fi rm Theratechnologies, Egrifta is administered once daily by injection. In a 52-week Phase III trial of the drug, participants saw an 18% loss of abdominal fat on average, providing not only physical benefits but a mental lift as well. “The presence of excess fat with this condition may contribute to other health problems as well as affect a patient’s quality of life, so treatments that demonstrate
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they are safe and effective at treating these symptoms are important,” said FDA official Curtis Rosebraugh, MD, in announcing the drug’s approval in November. In December, Theratechnologies announced that it had granted another company, Sanofi-Aventis, the right to distribute Egrifta in Latin America, Africa, and the Middle East. Meanwhile, a new study confi rms previous fi ndings that the diabetes drug Avandia does not adequately treat lipoatrophy, the loss of fat tissue in the face, limbs, and buttocks. (Lipoatrophy and lipohypertrophy are both types of lipodystrophy, the abnormal redistribution of fat.) The drug, which has proved effective in treating HIV-related pre-diabetes, was found to reduce blood insulin levels but not cholesterol or triglycerides. The study, which consisted of nine HIV-positive men with lipoatrophy, led researchers to believe that while Avandia effectively caused a buildup of the body’s fat cells, it also brought about an increase in fat breakdown, resulting in no net change.
As many as 40% of HIVers under age 25 use marijuana, cocaine, crystal meth, or other drugs, and approximately one third admit to smoking marijuana on a daily basis, according to researchers. Yet the effect of drug use on HIV or on antiretroviral medicines used to combat the disease remains unknown, says John Sleasman, MD, a professor at the University of South Florida: “No one knows whether that is good, bad or indifferent.” That’s why Sleasman and his colleagues at USF are teaming up with researchers from the University of Florida and the University of California, San Diego, to get some answers. Over the next five years, with the help of a $4.7 million grant from the National Institutes of Health, they plan to study young HIVers to see how smoking marijuana might affect the immune system and the infection’s progression in the central nervous system—and how to support behavioral guidelines for HIV-positive youth. The universities will thoroughly examine the interaction between cannabis use and HIV infection on U.S. subjects aged 16-25. USF neurobiologists will explore the basic effects of cannabinoids, the active component in cannabis, on the immune system, while a neuropsychologist at UCSD will lead research examining what cannabinoids do to the brain. Virologists at UF will evaluate the effect of cannabinoids on infected and virus-free macrophages—the white blood cells that produce the immune system’s response to infection. Lead researcher Maureen Goodenow, Ph.D., from UF says the data will help physicians diagnose and treat young HIVers who use drugs.
EGRIFTA: COURTESY EMD SERONO; MARIJUANA: THINKSTOCK
Researchers study how marijuana, illegal in most states, affects young people with HIV
Blocked Up A natural compound could stop HIV’s spread in the body—right where it begins researchers are seeing positive results with an early-stage virus-inhibitory peptide (VIRIP), a natural compound that blocks HIV from spreading throughout the body. With some adjustments made since the initial 2007 study of this compound, its antiretroviral potency is even more effective. The research, still in its early stages, might help create new drugs to fight the spread of infection. The VIRIP targets a region of the HIV membrane protein that is typically buried in the virus. Research shows that it becomes exposed right as the virus attacks the host cell, and scientists at the University of Ulm in Germany are looking for a way to target that protein as a way to stop the virus from spreading throughout the body, according to a December report
published in Science Translational Medicine. In addition, it is believed VIRIP might become stronger in fighting drug-resistant forms of HIV. The German researchers held a small clinical trial of 18 people who contracted HIV but had not yet been treated for it. They found that the maximum intravenous dosage of a VIRIP derivative—which they’re calling VIR-576—reduced viral loads by 95% after 10 days of treatment. But in order for VIR-576 to reach the public or even be studied further, scientists must first find a way to reduce the cost of daily doses and create an easier method of administering it. The research team is working with VIRO Pharmaceuticals to develop a more affordable form of the drug that can be taken orally.
It’s in the Genes
FROM TOP: ROBERT HOUSER/GE T T Y IMAGES, THINKSTOCK
Genetic testing could help you sidestep some drugs’ nasty side effects while genetic testing has become a popular way to determine if a person has inherited traits that could trigger diseases like cancer or sickle-cell anemia, new research shows that similar testing can also help determine whether a person may experience side effects from HIV medication. For a study published in the January 15 issue of The Journal of Infectious Diseases, scientists looked at how certain genetic factors, known as alleles, affected patients’ reaction to HIV drugs. Prior research had established that the HLA-B5701 allele caused hypersensitivity to abacavir, an ingredient found in the drugs Ziagen and Epzicom, but this study found that some other alleles are linked to drug reactions, although not as predictably as HLA-B5701.
The study, led by Rubin Lubomirov, M.D., Ph.D., from the University of Lausanne in Switzerland, suggests that people may want to consider having their genes analyzed to determine whether certain prescription drugs might be too harsh for their bodies. The scientists found that 71% of people with alleles that affect the liver’s processing of drugs had to discontinue or alter their dosage of efavirenz (found in Sustiva and Atripla) due to side effects, as opposed to the 28% of those who lacked them. Similarly, 62% of people with two alternate sequences in the UGT1A1 gene found it necessary to stop taking atazanavir (Reyataz), while this number dropped considerably among those with a single alternate sequence (only 24%) or no alternates at all (15%). The next step, the study’s authors say, is to set up a clinical trial using the new data to find an economic, effective way of examining people’s genetic markers.
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STATUS+SYMBOLS MIND MOOD
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Gary McClain, Ph.D.
Spring Awakening It’s the perfect time to make some positive changes in your life— and we’re not just talking about organizing your closet spring is almost upon us. Regardless of the climate you live in, you’re probably breathing a sigh of relief that another winter has ended. You may also have the sense that, with the shift toward warmer weather, your life is also kicking back into gear. Change is in the air! Maybe you’re thinking about updating your look, expanding your mind, looking for a relationship, or maybe just giving your living space a good cleaning. Whatever spring means to you personally, I would encourage you to approach the change of seasons by taking a look at your key strengths and deciding what areas of your life really support your well-being and what areas could use some updating. In other words, maybe it’s time for a tune-up. Here are some areas of your life to consider: Your emotional support team. Who are your go-to guys when you need a listening ear while you vent, rejoice, or have a good cry? How about when you want to throw out some ideas and get a fresh perspective? Keep those people close. And if you’ve got a few empty spots on your support team, make it one of your goals to recruit some new members. Your health care team. Are you working closely with your health care professionals by keeping them informed of what aspects of your treatment are working well for you, letting them know what’s not, and asking
questions? Having a team in place that you trust and can partner with is essential to optimizing your health. Your problem-solving skills. Not sure what your problem-solving skills are? Th ink of when you were facing a challenge that threatened to overwhelm you, like a financial crisis, a health issue, or a relationship problem. How did you get through it? What inner resources did you call upon? What outside resources? Give this some thought and you will be able to identify your strengths as well as what you want to work on. Your attitude. I know, here we go again with the positive thinking. But on those days when life feels like a long, hard road, I would encourage you to modify your self-talk just enough to accommodate the possibility that things may not be as bad as they appear at that moment. Practice countering the negatives with a few positives (“I can do it”). Remind yourself that life is good, that other people are doing the best they can under the circumstances, and that you can get to the other side of the dark cloud. In other words, the cup may actually be half full. Th ink compassion, starting with yourself. Your destressing techniques. What do you do to calm that raging storm inside of you? Listen to your favorite music? Take a leisurely walk outside? Meditate? Pray? Do some yoga? Call a friend? Most of us have something that we can rely on to
help us relax and return to our center when life feels especially overwhelming. Again, what’s worked for you in the past? And if you don’t have a destressing technique, you might try the ones I suggested. Your diet and exercise habits. I am not going to give you the healthy eating lecture. But I do want to remind you of the importance of maintaining a healthy diet, one that promotes well-being and positive energy. Staying active—doing things you enjoy (that aren’t passive)—is also important to enhancing your energy and welfare. Your information. Are you staying abreast of the latest research on HIV and its treatment? Are you aware of how the medications you are taking work and what side effects you might expect? Are you on top of things you need to be proactive about? When you’re up on the latest information, you are better able to partner with your physician. Your vision for the future. What are you working toward? What keeps you going? Anybody else you want to be there for? Create a realistic vision for what you want your life to look like in the future and commit to making it happen. McClain is a counselor in New York City with a specialty in coping with chronic health conditions. His books include The Complete Idiot’s Guide to Breaking Bad Habits and Empowering Your Life With Joy.
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PERFECTLY FLAWED
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Corey Saucier
Keep the Faith
THINKSTOCK
With a little help from his pastor, columnist Corey Saucier experiences a “come to Jesus” moment the preacher asked me to raise my hand. There were thousands of us there wearing Christmas colors and feeling crazy in our Christian fever. Black, white, Asian, and Latin together, singing “Hallelujah” with wide white eyes and spittle-covered lips. And he was talking to me. He had never spoken to me before. I’m not sure I wanted to be seen; I was high on bliss and lost to the opiate of the masses until he called on me to raise my hand. “Is there anyone here suffering from AIDS?” he asked. The fear gripped me instantly. The church grew quiet, and it began to snow outside. The spirit of God filled the room, but still I was afraid. Whatever—I raised my hand anyway. I had been through more challenging things than being the only queer in a church of Pentecostals who may be rabid and thirsty for blood—I had been dead before: sprawled out lifeless on dirty bathroom tile with a needle of crystal beside me. I could take down this guy if he wanted to make a show of me. But no one even blinked. No judging eyes turned to stare at me, no whispers came to silence me, and no one moved away. It was my fear, not theirs, that surrounded me. They simply began to pray. A chanting filled the room: mys-
tic spells, centuries old, began to condense in the wind. The woman next to me wept as she gently put a hand across my back. The preacher asked, “Do you believe you can be healed?” I lowered my head and began to cry. I couldn’t lie in church. But then something happened that had never happened before. I asked myself the question, Why not? He looked at me from his stage, standing in a single spotlight. He smiled and said, “God can do all things, and a miracle is on its way. I pronounce a cure for AIDS is yours if you want it. All you have to do is believe.” And for that second I did. For a brief moment of a moment, I believed. And then time moved on. The snow stopped, the music began again, and we went back to our silly songs. After church, the lady next to me told me her name was Allison. She was from Sweden, and with her thick accent she said, “Anything is possible, you know.” The next day on the news it was announced that German doctors claim to have cured an American man of his HIV infection through a stem cell transplant. Coincidence? Saucier is a writer, blogger, and performance artist based in Los Angeles. Find more of his work on HIVPlusMag.com.
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STATUS SYMBOLS ASK + TELL
women? The stigma definitely still exists, specifically in communities of color. We serve black and Latino women who, because of their culture, still do not discuss issues related to HIV. Many of the women, especially those who are newly diagnosed or new to treatment, still believe it’s a death sentence. We work with them to understand there are women living with the virus for over 25 years. Another stigma that exists is that women with the disease believe they can’t have children. We work to convince them you can still be a mother. Have women grown more comfortable speaking with their partners about HIV? No. Once we work with people through some of our prevention intervention, they’re more comfortable talking about both HIV and condom use. Some of our women in relationships aren’t comfortable initiating conversations or asking their partners to use condoms because they don’t want their partners to think they’re cheating.
founded by women for women in 1993, New York City’s Iris House provides a bounty of HIV-related services and programs. The organization’s executive director, Ingrid Floyd, speaks about the challenges facing her nonprofit and the busy HIV-positive women with whom she works—many are juggling kids, work, and relationships. What services does Iris House provide? We deliver comprehensive services that include food and nutrition, and we have counselors and nutritionists on site. We do case management; we do behavioral health. We offer psychotherapy groups, support groups, housing services. We have apartments where our clients live. We do a host of prevention services in the community, including condom distribution and HIV rapid testing. Have you noticed an increase in women seeking your assistance in the past year? Due to the recession, we definitely have more people accessing our
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nutrition counseling and meals. In many cases, women are heads of households, and due to rising costs of food, we’re seeing more women coming in for those nutrition services. We try to give people healthy food items, specifically immune-boosting foods like produce and lean proteins that they can’t normally afford if they’re on public assistance. We remind women that they need to be healthy to care for their family— that requires sticking to their medical regimens and seeing their doctor regularly. In your time with Iris House, have you witnessed a change in the stigma affecting HIV-positive
What kind of prevention and treatment messages really resonate with the women you work with? The women we serve are more inclined to pay attention when they see ads and billboards reflecting their culture. Oftentimes, if the person in the message doesn’t look like them, they don’t think it applies to them— especially since so much of the messaging around HIV has been focused on gay men. What do you think of the graphic “It’s Never Just HIV” campaign by the New York City Department of Health (see page 8)? I have mixed reactions every time I see it. One thought is that at least it’s getting the message into households. But the imagery of the advertisement and the fact that it stereotypes what types of illnesses people with HIV may or may not have—that troubles me. ✜
OLUBODE SHAWN BROWN
Sisters Doin’ It for Themselves
Have there been any scientific or medical advances concerning women and HIV that have made you more optimistic? Rapid testing is one of the best advances in the last few years of the epidemic—now more people are willing to be tested. The microbicides and the vaccines—there’s a lot of hope these things will move along, but I’m not as optimistic about how soon they will be available to the community.
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