S DAY I
A R L D ID
E S S U 20
TRE ATMENT+HE ALTH+RE SE ARCH
CURE WATCH A LOOK BACK AT HOW CLOSE WE CAME IN 2013
+ A Vaccine + New Drugs + Stigma Busting @USCA
E N R U O B S O Y KELL
last to fight HIV e th be ill w n tio ra ne ge r he Why
By Sunnivie Brydum
IN THIS ISSUE
HIV BOOKSHELF Great new reads for winter.
Breaking Down Barriers HIV activists seek new ways to engage Latinos in the fight.
Standout Student HIV-positive collegian Kristopher Sharp became student body vice president after a brutal smear campaign.
10 Grant ME SERENITY Musician John Grant opens up.
11 A Place to Call home As the HIV-positive population ages, nursing homes must adjust.
12 WHAT YOU NEED TO KNOW
Treatment news about Tivicay, IRIS, and Livalo.
44 Touchy Subject By Ian Finkenbinder more
24 Ask & Tell Fergie talks HIV; R&B Divas’ Monifah Carter on her poz brother and overcoming depression.
47 Daily dose: Making Peace How to coexist with your HIV.
48 cure watch Why 2013 has been the most hopeful year yet in the search for a cure.
Ozzy and Sharon Osbourne’s daughter Kelly is out of her parents’ shadow and dedicated to seeing an end to the HIV epidemic.
World AIDS Day
ge t t y images
The daughter of entertainment legends challenges her generation to shepherd the end of HIV.
Stigma, Vaccines, & More
Thousands gathered in New Orleans to share discoveries and breakthroughs on HIV at the U.S. Conference on AIDS.
On the cover: Kelly Osbourne photograph by Getty Images
This Is How You Survive
Individuals and families find a hand up in Los Angeles.
Humorist Augusten Burroughs on facing the worst.
A Star’s Greatest Role
A new film on Elizabeth Taylor and amfAR.
Diane Anderson-Minshall Scott McPherson copy chief Trudy Ring ASSOCIATE ART DIRECTOR Boo Jarchow
Editor in chief
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Stephen Murray Amanda Johnson creative director, integrated marketing Robert Hébert senior manager Kevin Lesser senior VP, marketing & Brand strategy
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HIV Plus (ISSN 1522-3086) is published bimonthly by Here Publishing Inc., 10990 Wilshire Blvd., Penthouse Suite, Los Angeles, CA 90024. HIV Plus is a registered trademark of Here Media Inc. Entire contents © 2013 by Here Publishing Inc. All rights reserved. Printed in the USA.
november /december 2013
wrote a big op - ed during my junior year in high school, in 1985, urging my classmates to remember that Rock Hudson—who was dying of AIDS at the time—deserved our empathy rather than to be the butt of our jokes. Our cover girl, Kelly Osbourne, was a year old when it came out. That makes me feel very old, but it also makes me hopeful. I have faith in the kid. When she tells us that her generation will be the last to fight HIV, I believe it's possible. Of course, it's not just Kelly and her star power, it's the young people I met at September's U.S. Conference on AIDS in New Orleans, and the news we got on all the research being done on vaccines, cures, treatments, and, thanks to Obamacare, the medical coverage extended to 140,000 more HIV-positive folks. But there's plenty to be done, especially in the South, which still accounts for half of all HIV infections in the country. We're going to start by covering the stories we came across at the conference (see p. 17 for a few recaps) in the magazine and online at HIVPlusMag.com. And we'd like to share your stories too—it's by being vocal and strong and together that we'll end HIV in a lifetime and equally important, stop stigma against those of us with HIV now. Got a story? Email me at editor@HIVPlusMag.com.
Diane Anderson-Minshall Editor in Chief
Novel Ideas From a young adult novel about being HIV-positive to a murder mystery involving a positive sleuth, there’s plenty of new literature on the HIV bookshelf By Katie Wurtzel
A Place at the Table (Touchstone) benefits from author Susan Rebecca White’s intricate style as she chronicles how the lives of three New Yorkers become unexpectedly connected at a local café. In the rich novel that spans from North Carolina in the 1920s to the devastating beginnings of the AIDS epidemic in 1980s Manhattan, White tells the story of Bobby, a gay Southerner; Amelia; a wealthy Connecticut woman; and Alice, an African-American chef.
“I’ve run away from my life,” says the broken, bitter, and faithless Rev. Sarah Obadias. Abraham Darby, a man she meets at a New York City restaurant, replies, “I know. Take mine.” Georgeann Packard’s Paint the Bird (Permanent Press) tells the story of Sarah’s immediate connection with Abraham and the shock when she finds herself accompanying him to the funeral of his son, Yago Darby Díaz, who has died of AIDS-related causes. Sarah and Abraham’s lives become intertwined with those of Yago’s widower, the two men’s son, the child’s birth mother, and Yago’s mom. Despite the colorful cast of characters, Sarah is ultimately left alone to patch her life together.
Jessica Verdi’s My Life After Now (Sourcebooks Fire) is one of the very few young adult novels to explore frankly and compassionately what it’s like for teens who discover they’re HIV-positive. High school student Lucy has had more than her fair share of drama, and she needs to get away from her problems for one night. But when her night of wild freedom results in an HIV diagnosis, she has no idea how to face her future—much less her friends, her boyfriend, and her two dads. Archer Barron, the protagonist of Joyce Thompson’s How to Greet Strangers (Lethe Press), is a man who has lost everything and is trying to get it back. Once an aspiring lawyer, he’s now a Bay Area university night watchman who has become disillusioned with life following his boyfriend’s death and his own HIVpositive diagnosis. Then a Santería priestess who had promised to cure him in exchange for money is murdered. When the police target him as a prime suspect, Archer turns detective to find the real killer. Carol Rifka Brunt’s Tell the Wolves I’m Home (Random House) is the story of 14-year old June, who loses her closest confidant and best friend when her uncle, a renowned painter, dies of AIDS complications. A few days after his death, she receives a note from a strange man she noticed lurking around the funeral, asking her to meet. As the two spend time together, June leans on this man and discovers how he knew her uncle Finn so well.
Productive Grief Any of us who’ve witnessed the AIDS epidemic up close have lost friends to the disease, and some of us have wondered what to do with our grief. Writer Victoria Noe makes a valuable suggestion in her new book, Friend Grief and AIDS: Channel it into efforts to fight the disease and help those affected by it. “Give money, volunteer your time, educate yourself, spread the word to others,” writes Noe, a Chicagoan who has extensive experience fund-raising for AIDS service organizations. She reminds us that AIDS is still a big deal, and education, prevention, treatment, and related services still need support. That’s the best tribute to our friends, she says: “When the story of the AIDS epidemic is written (in the past tense) the underlying theme will be of friendship.… You don’t have to lay down your life for your friend—just give of yourself.” The book, the second in Noe’s Friend Grief series, is available as a paperback or e-book and at FriendGrief.com. —Trudy Ring
november /december 2013 •
push it real good ...on the slopes
Prevention Efforts Face Cultural Challenges Latino-focused education and prevention efforts seek to overcome some social and cultural barriers
s hiv prevention campaigns increasingly reach out to Latinos, it’s a reminder that this population remains disproportionately affected by the virus— something that’s rooted in a variety of societal and cultural factors, HIV experts say. “I think the biggest issue right now is stigma,” says Illiana Gilliland, director of care at the AIDS Foundation of Chicago. Among some Latinos, there’s a fear that if they’re seen going in for an HIV test, they’ll be thought to be gay or promiscuous, she says, both of which have negative connotations in certain subsets of this population. Stigma is definitely a factor, says Cynthia Davis, an assistant professor at Charles Drew University of Medicine and Science in Los Angeles, who has done much outreach work with Latino and other minority communities. “That stigma hasn’t gone away in 30-some years,” she says. While there is great diversity within this population, some Latinos face language barriers or may distrust the health care system, while those who are undocumented immigrants fear deportation, resulting in reluctance to be tested for HIV or seek treatment if they’re positive. Though Latinos represent 17% of the U.S. population, they accounted for 20% of new HIV diagnoses in 2011, the most recent year for which figures are available from the Centers for Dis-
• november /december 2013
ease Control and Prevention. Latino men are three times as likely as white men to have HIV, and Latino women four times as likely. Education can do much to address the situation, but it’s not always readily available, to Latinos or anyone else. “We don’t have compulsory sex education in this country,” says Davis, adding that such education belongs in every middle and high school. Without it, she points out, “people just don’t have accurate information”—about how HIV is transmitted, proper condom use, the availability of the female condom, or existence of treatments that keep HIV from being a death sentence. Gilliland concurs, saying, “There is still a lot of misinformation out there.” There are several educational efforts going on, however, such as the Univision TV network’s HIV awareness initiative and the CDC’s recently launched Reasons/Razones campaign, aimed particularly at Latino gay and bisexual men, an especially hard-hit group, reminding them of the many reasons to be tested and the actions everyone can take to prevent the transmission of HIV. The campaign uses print, outdoor, and online advertising as well as social media, with a Facebook page and a Twitter hashtag, #ShareReasons. Davis notes that social media can play an important role, especially in reaching young people. Whatever the medium, she says, “we’ve got to get the word out.” —Trudy Ring
An image of iconic hip-hop duo Salt-NPepa graces a new Burton snowboard, an effort in the company’s partnership with Lifebeat: Music Fights HIV/AIDS. A portion of the proceeds will go toward projects aimed at stopping the spread of HIV among young people, including safe-sex education, free condoms, counseling, and testing. The exclusive (and awesome) Salt-N-Pepa “Push It” women’s snowboard hit stores in September and is available online as well (Burton.com). —David Artavia
Positively Elected Even a smear campaign couldn’t derail Kristopher Sharp’s quest to become student body vice president By Scott McPherson
opposite page (from left): photos.com, facebook; this page: facebook
hen gay college junior Kristopher Sharp launched a campaign to become the vice president of the student body at the University of HoustonDowntown, he knew that his sexual orientation might come up in the campaign he was running with presidential candidate Isaac Valdez. But Sharp, a 23-year-old social work major, never expected his medical records to be posted around the campus with a message shaming him for being HIV-positive. Shortly after Sharp and Valdez filed the appropriate paperwork to run for vice president and president of the student body, respectively, mysterious fliers began to appear on campus. The single-page posters featured a picture of Sharp with an X over him and text reading “Want AIDS? Don’t Support the Isaac and Kris Homosexual Agenda.” Although Sharp is open about his HIV status, he told the Houston Press he was devastated by the personal attacks. On the back of the fliers, the culprit included a copy of Sharp’s medical records to prove the young man was positive. Sharp’s running mate was also attacked throughout the campaign. But despite these hateful campaign tactics, Sharp and Valdez were elected to lead the University of Houston-Downtown’s student body. HIV Plus got in touch with the courageous activist to see how he’s settling in to his new position. Congratulations on winning the student body election. How does it make you feel to have the support of all those students who now know your status? To know that, despite the attacks against my campaign, my peers were able to see that I was the best candidate and rally in support of me and my efforts is just phenomenal. In the last week of our campaign, I had prepared myself for the possibility of losing. When the results were announced, I immediately thanked God for not allowing those abhorrent acts of bigotry to sway my peers. It really made me appreciate being a UHD Gator. How has the general attitude been around campus? Since Isaac and I have begun our administration, we have gotten nothing but support and love from the student body. Almost daily we have someone thank us for “standing up to hate” that surfaced during our campaign. I believe because of the way we handled everything, we earned a lot of respect from a lot of folks in the community and on campus. When all is said and done, we did our very best to combat the attacks with a message of understanding and compassion. Our resiliency not only helped us win, but it has positioned us to create tangible and lasting changes within our university and within our community. Do you think the smear campaign hurt or helped you win? In all honesty, I really can’t give an accurate answer to that question. I think that the actual defamation that took place hurt Isaac and I both.
What I believe may have helped us is the way we decided to deal with the attacks. Never once did we criticize our opponents in a negative or untrue fashion. Never once did we callously spread malicious lies about the character of those we suspected of the smear tactic. Never once did we allow the prejudice of others to influence our actions. Rather, we dug our feet deeper into the trenches and boldly asked, “Is that all you’ve got?” In truth, anyone can engage in mudslinging and dirty politics; however, it takes irrefutable forthrightness to smile in the face of adversity and persevere through the onslaught. Now that, I believe, has made all the difference. Once you graduate next year, what are your plans? Do you want to continue into politics? Life has a real way of throwing curveballs at any “plans” we humans like to make. So yes, at the moment, my long-term goal is to run for public office and continue to pursue a career in the political arena. The more educated I become, the more I understand that flawed social policy—and the lawmakers responsible for crafting it—are responsible for either the continuity or the creation of disenfranchised communities of people. This has got to stop, and I will persevere until it does. What would you say to young people like yourself, who might fear getting tested because they’re afraid someone may do to them what was done to you? This question means so much more to me now than it would have just a few months ago. I would simply tell them that they have nothing to fear. God has a reason for everything that happens in this small world of ours. Being HIV-positive isn’t a death sentence or a curse. Ironically, for some, it is a call to duty, an instruction to take charge and dedicate themselves to the betterment of mankind. Getting tested and staying protected is key. But for those of us who are not so fortunate…perhaps we should begin to reevaluate our situations and take a look at just how fortunate we really are. november /december 2013 •
Grant’s Ghosts here is a road that cuts the state of Colorado in half. Beginning in New Mexico, a person can drive north on this highway through the cities of Trinidad and Colorado Springs, past Denver and Littleton, through Boulder and the Rocky Mountain National Park, and end his travels in Laramie, Wyo. Along this road, in a town called Parker, musician John Grant spent most of his early life. Looking back, he vividly recalls his nighttime drives down this stretch of pavement and the smell of the Russian olive trees that line the road. “They give off the most incredible fragrance,” says Grant, 44, who named his latest album, Pale Green Ghosts, for the yellow-flowered trees that glow silver in the moonlight. “It’s sort of an oasis in the midst of a chaotic time, my adolescence. It’s a memory that’s really beautiful for me—a moment. It’s a capturing of a small moment.” The trees are not the only ghosts in the album, which contains many small moments from the life of John Grant, who has had more than his fair share of challenges, including alcoholism, drug abuse, and living with HIV. Remarkably, Pale Green Ghosts, a haunting record born of Grant’s collaboration with Biggi Veira of the Icelandic electronica group GusGus, shares not only the pain of
• november /december 2013
this journey but also the beauty that blooms unexpectedly like flowers along a highway. In the song “Glacier,” which is rooted in the artist’s struggles of coming out as a gay man, Grant sings about the ache of being a social outcast: “They say you are sick / That you should hang your head in shame / They are pointing fingers / And want you to take the blame.” Grant uses the image of the glacier, a large mass of ice that carves mountains and rivers in its crawl across a continent, to convey the emotional transformation that occurs during suffering. And transformation doesn’t always mean destruction. As the chorus states, the “glacier moving through you” becomes a means of “nourishing the ground” and “creating spectacular landscapes.” Grant would like to have heard such sentiments when he was young. “I wished I had heard somebody talking about the fact, you know, being gay didn’t make me less of a human than other people,” he says. “It takes a very, very long time to undo a lot of the damage [from antigay bigotry].” Grant’s pain led him to seek escape through alcohol, drugs, and sex. He attributes his becoming HIV-positive to this destructive mind-set, which caused him to abuse “a lot of things that
this page: Garoar Olafsson; opposite page: photos.com
Musician John Grant, who publicly revealed his HIV-positive status at a concert last year, talks about Russian olive trees, the importance of Ernest Borgnine, and his latest album, Pale Green Ghosts
other people can enjoy quite naturally,” the musician says. “And these things turned into life-and-death situations for me, things that could have killed me and destroyed me.” The line between life and death often blurs in Pale Green Ghosts. In “Ernest Borgnine,” a song that honors one of Grant’s favorite actors, the speaker recalls the damning words of his father after a string of drug references: “Dad keep looking at me says I got the disease / Now what did you expect, you spent your life on your knees.” While the verses are tinged with shame, the chorus repeats the phrase “I wonder what Ernest ‘Ernie’ Borgnine would do,” a steady mantra amid the chaos. Grant says the song is a means of coping with his HIV diagnosis. He decided to be tested after receiving a text message from a former lover in January 2011 that said “I’ve got bad news,” and he learned he was positive. “ ‘Ernest Borgnine’ is just an absurd take on Woody Allen’s Purple Rose of Cairo,” Grant says, referring to the 1985 film in which a woman goes to the movies to escape her life’s hardships during the 1930s. “And so that’s what this is for me. It’s me escaping the diagnosis of HIV…and wondering what one of my cinematic heroes would do.” Ultimately, it was the words of a nurse that swayed Grant from his destructive path. His caregiver referred Grant to Alcoholics Anonymous, a moment he calls “a turning point, because that led to me getting sober and slowly starting to face myself.” “I was just tired,” Grant says. “I was tired and I wanted to do something with my life, and I knew that I wasn’t going to be able to do anything with my life unless I got sober.” And sobriety helped. Pale Green Ghosts follows Grant’s critically acclaimed debut solo album, Queen of Denmark, which was named best album of 2010 by Mojo magazine. (Grant launched his solo career after the breakup of his band the Czars, which performed throughout the 1990s and early 2000s.) The title track even inspired a cover by Sinéad O’Connor, who is now a friend of Grant’s and a backup vocalist on Pale Green Ghosts. Grant, whose bearded and brooding charm makes him a far cry from the mainstream perception of a person living with HIV, came out about his status while performing in the 2012 Meltdown festival in London. The act is a testament to his progress in overcoming his addictions and the anxieties tied to his diagnosis. “I talked about it because I was about to sing a song that I’d written about it, and I didn’t know if I should say anything,” says Grant, who, perhaps, had figured out exactly what Ernest Borgnine would have done. “And at the last moment, I was like, you know what, it’s no big deal. There’s millions of people dealing with this.… I don’t feel like I should be ashamed of it.” —Daniel Reynolds
Knowing Is Half The Battle
HIV may harm brain function, especially as we age, but some facilities can help
ome of the physical effects to HIV may be better known, but loss of brain function can also affect people with HIV or AIDS, especially as they age. In fact, the virus can change the size of some brain structures and lead to forgetfulness, behavioral changes, headaches, and the loss of sensation in the extremities. And people with advanced infection may experience dementia. These symptoms are difficult to manage or control, but the Schulman and Schachne Institute for Nursing and Rehabilitation at Brookdale University Hospital and Medical Center in Brooklyn, N.Y., is working to make life for those with AIDS-related dementia a little more comfortable. The institute is a voluntary care facility dedicated to providing a homelike environment to its clients, many of whom have HIV or AIDS. According to the National Institutes of Health, symptoms of AIDSrelated dementia—sometimes called AIDS dementia complex or HIV-associated dementia—include encephalitis (inflammation of the brain), behavioral changes, and a
gradual decline in cognitive function, including trouble with concentration, memory, and attention. Motor skills begin to deteriorate, with loss of dexterity and coordination. This disorder can affect about half of those who advance to AIDS. Most people who become HIVpositive will still live a long life, but many will eventually find themselves in assisted living facilities and nursing homes. The Schulman and Schachne Institute is one of many nursing facilities dedicated to providing this sort of care to people with HIV across New York City. This facility in particular has a long history of expertise in dementia care, using multiple strategies— therapeutic activities and staff interventions, for example—to help patients. The institute’s residents may be admitted after enduring the acute phase of their illness; those needing long-term geriatric care to deal with dementia, or hospice care, are also welcome. Three 40-bed facilities are available, and each person admitted is assigned their own staff of medical professionals to help them along. —Michelle Garcia
november /december 2013 •
Heart Smart New research demonstrates the effectiveness of a drug that battles cholesterol in HIV-positive people
or some people, lowering their cholesterol is not as easy as putting down the cheeseburger, and for people with HIV, getting their cholesterol count lowered is crucial to their overall health. The drug pitavastatin, sold as Livalo, was found to significantly lower cholesterol in HIV-positive people, according to a study whose results were announced at a June conference. Cholesterol is a by-product of food that the body needs to function—it often derives from animal fats in meat and cheese—but it can be harmful in large quantities. An abnormal amount of cholesterol, a condition called dyslipidemia, is common among HIV-positive people. Dyslipidemia, along with glucose abnormalities, places those who are HIV-positive at elevated risk for cardiovascular disease, such as harden12
• november /december 2013
ing of the arteries and heart attacks. “Adults with HIV or AIDS may be at an increased risk for development of coronary heart disease due to many factors, including the effects of increasingly older age of patients with HIV and long-term exposure and side effects to antiretroviral therapies that can cause high cholesterol and other metabolic abnormalities,” Craig Sponseller, vice president of medical affairs for Livalo’s maker, Kowa Pharmaceuticals America, told HIV Plus. Many people with HIV take cholesterollowering medications, often drugs called statins. But last year the Food and Drug Administration declared that statins taken with protease inhibitors—found in many HIV meds—increase the risk of muscle injury and could lead to kidney failure in some patients. While the recent findings on
Livalo don’t mention its impact on muscle health, they do indicate the drug is a better bet for heart health in HIV-positive people than another statin, called pravastatin. “Livalo provided significantly greater low-density lipoprotein reduction compared with pravastatin in HIV-infected adults with high cholesterol,” said Livalo spokeswoman Mariesa Kemble. Low-density lipoproteins contribute to fat buildup in the arteries and are a risk factor for heart disease. “Statins are often the first line of treatment for the management of dyslipidemia when therapeutic lifestyle changes are not effective in HIV-infected patients,” Judith Aberg, investigator on the Livalo study and director of virology at Bellevue Hospital Center, said in a statement. “These results may further physician education on statin use.” —Neal Broverman
the truth about iris What you need to know about immune reconstitution inflammatory syndrome, or IRIS What is it? IRIS is an inflammatory condition that typically becomes noticeable after a person goes on HIV therapy for the first time or when people restart their medications after taking a lengthy break. Who gets IRIS? It is prevalent mainly among people with damaged immune systems, including but not limited to those who are HIV-positive. People with TB, rheumatoid arthritis, lupus, Graves’ disease, hepatitis B or C, Kaposi’s sarcoma, shingles, cytomegalovirus, or herpes are also prone to IRIS. What are the symptoms? IRIS is represented by soreness, rashes, swollen lymph nodes, and skin lesions. It can also lead to changes in breathing, pneumonia, hepatitis, abscesses, and eye inflammation. These symptoms can show up on any part of the body, including internal organs or nerve fibers. How can it be treated? The science behind IRIS is still being deciphered, but people experiencing IRIS usually continue their HIV medication unless the inflammation becomes life-threatening. From there, a doctor would prescribe nonsteroidal anti-inflammatory drugs or corticosteroids to reduce the inflammation.
Tivicay, First Drug From Viiv Healthcare, Wins Approval The new once- or twice-a-day integrase inhibitor provides yet another option in HIV treatment
he u.s. Food and Drug Administration has approved Tivicay, a new drug to be used in combination with other medications to treat HIV. Tivicay (generic name dolutegravir) is an integrase inhibitor, meaning it interferes with integrase, one of the enzymes HIV needs to reproduce. The FDA approved it August 12 for use in patients new to HIV treatment and those who have taken other drugs. It comes as a 50-milligram tablet to be taken once or twice daily, depending on the patient, at any time of day, with or without food. It is the first new drug developed by Viiv Healthcare, a company established by GlaxoSmithKline and Pfizer in 2009 to focus on creating new HIV treatments. Tivicay, evaluated against other medications in clinical trials, expands the options for treating HIV, FDA and drug
company officials said. “HIV-infected individuals require treatment regimens personalized to fit their condition and their needs,” said Edward Cox, director of the Office of Antimicrobial Products in the FDA’s Center for Drug Evaluation and Research. “The approval of new drugs like Tivicay that add to the existing options remains a priority for the FDA.” Viiv Healthcare chief medical officer John Pottage noted, “Tivicay provides a new opportunity for health care professionals to choose the right regimen for their patients, providing a focal point around which to individualize therapy. HIV treatment should not be a ‘one size fits all’ paradigm.… As HIV has become a chronic disease, and people now are living for a long time with the disease, we know that new medicines will always be needed.” —Trudy Ring november /december 2013 •
ment options. out my HIV treat ab e or m rn lea chose I was ready to essional and we y healthcare prof m to e uld ok sp I So . He told me it co my HIV regimen of rt pa as S ES ISENTR s and lifest yle. may fit my need fight my HIV and miss a beat. I donâ€™t want to Individuals with HIV
In a clinical study lasting more than 4 years (240 weeks), patients being treated with HIV medication for the first time demonstrated that ISENTRESSÂŽ (raltegravir) plus Truvada:
INDICATION ISENTRESS is a prescription HIV medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). The use of other medicines active against HIV in combination with ISENTRESS may increase your ability to fight HIV. ISENTRESS does not cure HIV infection or AIDS. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. IMPORTANT RISK INFORMATION Severe, potentially lifethreatening, and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: fever, generally ill feeling, extreme tiredness, muscle or joint aches, blisters or sores in mouth, blisters or peeling of skin, redness or swelling of the eyes, swelling of the mouth or face, problems breathing. Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: yellowing of the skin or whites of the eyes,
May reduce viral load to undetectable (less than 50 copies/mL) May significantly increase CD4 cell counts ISENTRESS may not have these effects on all patients Patients had a low rate of these moderate-to-severe common side effects (that interfered with or kept patients from performing daily activities): trouble sleeping (4%), headache (4%), nausea (3%), dizziness (2%), and tiredness (2%). dark or tea-colored urine, pale-colored stools/bowel movements, nausea/vomiting, loss of appetite, pain, aching or tenderness on the right side below the ribs. Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. People taking ISENTRESS may still develop infections or other conditions associated with HIV infections. The most common side effects of ISENTRESS include: dizziness, headache, nausea, tiredness and trouble sleeping. Less common side effects include: allergic reaction, depression, hepatitis, genital herpes, herpes zoster including shingles, kidney failure, kidney stones, stomach pain, suicidal thoughts and actions, vomiting and weakness.
sign of a rare but serious muscle problem that can lead to kidney problems. Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir (Prezista) together, than with either drug separately, but was generally mild. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. Tell your doctor if you have any side effect that bothers you or that does not go away. Tell your doctor about all your medical conditions, including if you have any allergies, are pregnant or plan to become pregnant, or are breastfeeding or plan to breastfeed. ISENTRESS is not recommended for use during pregnancy. Women with HIV should not breastfeed 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 commonly used to treat tuberculosis), nonprescription medicines, vitamins, and herbal supplements.
Tell your doctor before beginning ISENTRESS if you have a history of muscle disorders (rhabdomyolysis or myopathy) or increased creatine kinase or if you are taking medications known to cause these conditions such as statins, fenofibrate, gemfibrozil or zidovudine.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call FDA at 1-800-FDA-1088.
Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a
Please read the Patient Information on the adjacent page for more detailed information.
Need help paying for ISENTRESS? Call 1-866-350-9232 Talk to your healthcare professional about ISENTRESS and visit isentress.com Brands mentioned are the trademarks of their respective owners. Copyright ÂŠ 2013 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0008 08/13
Patient Information ISENTRESS ® (eye sen tris) (raltegravir) Film-Coated Tablets Read this Patient Information before you start taking ISENTRESS and each time you get a refill. There may be new information. This information does not take the place of talking with your doctor about your medical condition or your treatment. What is ISENTRESS? ISENTRESS is a prescription HIV medicine used with other HIV medicines to treat adults with human immunodeficiency virus (HIV-1) infection. HIV is the virus that causes AIDS (Acquired Immune Deficiency Syndrome). When used with other HIV medicines, ISENTRESS may reduce the amount of HIV in your blood (called “viral load”). ISENTRESS may also help to increase the number of CD4 (T) cells in your blood which help fight off other infections. Reducing the amount of HIV and increasing the CD4 (T) cell count may improve your immune system. This may reduce your risk of death or infections that can happen when your immune system is weak (opportunistic infections). ISENTRESS does not cure HIV infection or AIDS. People taking ISENTRESS may still develop infections or other conditions associated with HIV infection. Some of these conditions are pneumonia, herpes virus infections, and Mycobacterium avium complex (MAC) infections. Patients must stay on continuous HIV therapy to control infection and decrease HIV-related illnesses. Avoid doing things that can spread HIV-1 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 to lower the chance of sexual contact with semen, vaginal secretions, or blood. Ask your doctor if you have any questions on how to prevent passing HIV to other people. What should I tell my doctor before taking ISENTRESS? Before taking ISENTRESS, tell your doctor if you: • have liver problems. • have any other medical conditions. • are pregnant or plan to become pregnant. It is not known if ISENTRESS can harm your unborn baby. Pregnancy Registry: You and your doctor will need to decide if taking ISENTRESS is right for you. If you take ISENTRESS while you are pregnant, talk to your doctor about how you can be included in the Antiretroviral Pregnancy Registry. The purpose of the registry is to follow the health of you and your baby. • are breastfeeding or plan to breastfeed. - Do not breastfeed if you are taking ISENTRESS. You should not breastfeed if you have HIV because of the risk of passing HIV to your baby. - Talk with your doctor about the best way to feed your baby. Tell your doctor about all the medicines you take, including: prescription and nonprescription medicines, vitamins, and herbal supplements. Taking ISENTRESS and certain other medicines may affect each other causing serious side effects. ISENTRESS may affect the way other medicines work and other medicines may affect how ISENTRESS works. Especially tell your doctor if you take: • rifampin (Rifadin, Rifamate, Rifater, Rimactane), a medicine commonly used to treat tuberculosis. Ask your doctor or pharmacist if you are not sure whether any of your medicines are included in the list above. Know the medicines you take. Keep a list of them to show your doctor and pharmacist when you get a new medicine. Do not start any new medicines while you are taking ISENTRESS without first talking with your doctor. How should I take ISENTRESS? • Take ISENTRESS exactly as prescribed by your doctor. • You should stay under the care of your doctor while taking ISENTRESS. • Do not change your dose of ISENTRESS or stop your treatment without talking with your doctor first. • Take ISENTRESS by mouth, with or without food. • ISENTRESS Film-Coated Tablets must be swallowed whole. • If you miss a dose, take it as soon as you remember. If you do not remember until it is time for your next dose, skip the missed dose and go back to your regular schedule. Do not double your next dose or take more than your prescribed dose. • If you take too much ISENTRESS, call your doctor or go to the nearest emergency room right away. • Do not run out of ISENTRESS. Get your ISENTRESS refilled from your doctor or pharmacy before you run out. What are the possible side effects of ISENTRESS? ISENTRESS can cause serious side effects including: • Serious skin reactions and allergic reactions. Severe, potentially life-threatening and fatal skin reactions and allergic reactions have been reported in some patients taking ISENTRESS. If you develop a rash with any of the following symptoms, stop using ISENTRESS and contact your doctor right away: ° fever ° muscle or joint aches ° redness or swelling of the eyes ° generally ill feeling ° blisters or sores in mouth ° swelling of the mouth or face ° extreme tiredness ° blisters or peeling of the skin ° problems breathing Sometimes allergic reactions can affect body organs, like the liver. Contact your doctor right away if you have any of the following signs or symptoms of liver problems: ° yellowing of the skin or whites of the eyes ° dark or tea colored urine ° pale colored stools/bowel movements ° nausea/vomiting ° loss of appetite ° pain, aching or tenderness on the right side below the ribs
• Changes in your immune system (Immune Reconstitution Syndrome) can happen when you start taking HIV medicines. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your doctor right away if you start having new symptoms after starting your HIV medicine. The most common side effects of ISENTRESS include: • dizziness • tiredness • headache • trouble sleeping • nausea Less common side effects include: • allergic reaction • kidney failure • depression • kidney stones • genital herpes • stomach pain • hepatitis • suicidal thoughts and actions • herpes zoster • vomiting including shingles • weakness Tell your doctor before beginning ISENTRESS if you have a history of muscle disorders (rhabdomyolysis or myopathy) or increased creatine kinase or if you are taking medications known to cause these conditions such as statins, fenofibrate, gemfibrozil or zidovudine. Tell your doctor right away if you get unexplained muscle pain, tenderness, or weakness while taking ISENTRESS. This may be a sign of a rare but serious muscle problem that can lead to kidney problems. Rash occurred more often in patients taking ISENTRESS and darunavir/ritonavir together than with either drug separately, but was generally mild. Tell your doctor if you have any side effect that bothers you or that does not go away. These are not all the possible side effects of ISENTRESS. For more information, ask your doctor or pharmacist. 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 ISENTRESS? Film-Coated Tablets: • Store ISENTRESS Film-Coated Tablets at room temperature between 68°F to 77°F (20°C to 25°C). Keep ISENTRESS and all medicines out of the reach of children. General information about ISENTRESS Medicines are sometimes prescribed for conditions that are not mentioned in Patient Information Leaflets. Do not use ISENTRESS for a condition for which it was not prescribed. Do not give ISENTRESS to other people, even if they have the same symptoms you have. It may harm them. This leaflet gives you the most important information about ISENTRESS. If you would like to know more, talk with your doctor. You can ask your doctor or pharmacist for information about ISENTRESS that is written for health professionals. For more information go to www.ISENTRESS.com or call 1-800-622-4477.
What are the ingredients in ISENTRESS? ISENTRESS Film-Coated Tablets: Active ingredient: raltegravir Inactive ingredients: microcrystalline cellulose, lactose monohydrate, calcium phosphate dibasic anhydrous, hypromellose 2208, poloxamer 407 (contains 0.01% butylated hydroxytoluene as antioxidant), sodium stearyl fumarate, magnesium stearate. The film coating contains: polyvinyl alcohol, titanium dioxide, polyethylene glycol 3350, talc, red iron oxide and black iron oxide. This Patient Information has been approved by the U.S. Food and Drug Administration. Distributed by: Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. Whitehouse Station, NJ 08889, USA Revised August 2013 USPPI-0518-T-1308R023 Copyright © 2007, 2009, 2011 Merck Sharp & Dohme Corp., a subsidiary of Merck & Co., Inc. All rights reserved. INFC-1049069-0008 08/13 U.S. Patent Nos. US 7,169,780
USCA 2013 Report
The Road to Stopping HIV in the South
p hoto s.c om
There were hundreds of ideas coming out of the panels, roundtables, booths, and presentations at the National Minority AIDS Council’s 2013 U.S. Conference on AIDS in New Orleans in September. Here are just a few highlights from the largest annual AIDS conference in the country
The U.S. Conference on AIDS attracted more than 2,000 advocates, service providers, and people living with HIV or AIDS, and was centered around the theme “In It Till the End,” meant to reflect the momentous changes in our movement that, for the first time in more than 30 years, have made it possible to realistically envision an end to the epidemic. But the Deep South is still in deep denial. Kathy H. Kliebert, the interim secretary of Louisiana’s Department of Health and Hospitals and director of the state’s STI program, said the intersection of institutionalized racism, poverty, homophobia, health disparities, and lack of sex education explains why the southern states have the highest HIV and AIDS rates among African-Americans and gay and bisexual men. “Where is the office of poverty?” Kliebert demanded, saying that now was the time for us to look at the number one cause of HIV in the southern region of the U.S. The South accounts for only one third the U.S. population but almost half of all HIV infections. New Orleans is third in the nation for new HIV diagnoses, while Baton Rouge (just an hour north) ranks second, according to Kali Lindsey, the National Minority AIDS Council’s director of legislative and public affairs. Making matters worse, Louisiana is ranked sixth in the number of uninsured residents, but the state joined every other in the South in refusing to set up insurance marketplaces or take part in the Affordable Care Act’s Medicaid expansion. According to the Centers for Disease Control and Prevention, the South is home to seven of the 10 states with the highest rates of AIDS diagnoses, eight of the 10 with the highest rates of new HIV infection, and six of the 10 with the highest cumulative rates of individuals living with HIV. “Given the profile of the epidemic in the South and the region’s resistance to ACA implementation, it is especially critical that we highlight the unique challenges facing those working to combat HIV/AIDS here,” said Paul A. Kawata, executive director of the National Minority AIDS Council. Here are just a few of the conference findings.
1 in 4
people with HIV are also infected with hepatitis C The ACA Changes Everything Much of the work this year, said many presenters, will be in getting every eligible person enrolled in insurance under the ACA—commonly referred to as “Obamacare,” even by the president—now that open enrollment has begun. According to Health Resources and Services Administration, approximately 140,000 Americans living with HIV are eligible for expanded insurance coverage under the ACA. In addition to extending coverage to more people, the ACA requires HIV testing coverage, eliminates preexisting conditions exclusions and lifetime spending caps, and lets people stay on their parents’ insurance until age 26. But It Still Needs Work Leaving the decision to expand Medicaid up to each state was tantamount to “throwing HIV-positive poor people under the bus,” said Robert Greenwald, director of the Center for Health Law and Policy Innovation at Harvard Law School as well as the Treatment Access Expansion Project. Greenwald spoke to social workers, service providers, and activists about ensuring that all people with HIV are enrolled in an insurance program. In addition, he said, advocates must push for the Medicaid expansion that was originally planned—eight conservative Republican governors now have signed on to the expansion, and some others support alternative approaches, “such as the Arkansas premium assistance model; with safeguards in place it can work for low-income, uninsured people living with HIV.” There’s an End in Sight—Sort Of “For the first time since HIV emerged in 1981, we have a clear blueprint forward to
• november /december 2013
end this epidemic,” said Lindsey. Hundreds of thousands of individuals living with HIV are newly eligible for insurance coverage—many for the first time in their lives, Lindsey said. “Meanwhile, biomedical advances like treatment as prevention and pre-exposure prophylaxis have demonstrated incredible efficacy in slowing HIV transmission and hold great promise in our efforts to reduce new infections.” “When we join the Affordable Care Act with the science of ‘treatment as prevention’ and the National HIV/AIDS Strategy, we have a combination that can begin to end this epidemic,” added Kawata. Getting Care in Rural Louisiana The Southwest Louisiana AIDS Council announced the results of a two-year study, which looked at linkage to care and treatment adherence among people with HIV in the rural town of Lake Charles. Specifically, the study scrutinized the results of two of the AIDS Council’s programs, Facilitated Access to Coordinated Treatment and Treatment Adherence Program. Some of the findings: · Over 95% of individuals enrolled in the two programs were linked to medical care over the two-year period. · The percentage of people with an undetectable level of HIV in their blood increased to 56% in two years (a nearly 51% increase). · Average CD4-cell counts increased from 322 to 460 at an average of 18 months post-enrollment. Similarly, there was a decrease in the average levels of HIV in the blood of participants at 18 months post-enrollment. According to the Louisiana Department of Health and Hospitals, nearly half of all people living with HIV infection in Lake Charles were not in medical care in 2010. “Linkage, retention, and adherence to care and treatment can be particularly challenging in rural areas, where there are fewer options for health care services and unique obstacles exist, such as the need to travel long distances to access these services,” said Russell Brewer, director of the HIV, STD, and Reproductive Health program at the Louisiana Public Health Institute. “Particularly in the southern United States, where the CDC estimates that 45% of all new AIDS diagnoses occur, it’s encouraging to see measurable outcomes from interventions that are getting people
into care and providing the follow-up to help them over the long term.” The Doctor Talk A new online nationwide survey of more than 300 people living with HIV on antiretroviral therapy found them to be very engaged with their health care providers in the management of their HIV; nearly all (97%) said that they are proactive about managing their HIV condition, including drug treatment. However, the survey findings also showed that about three in four HIVers would like to spend more time discussing drug treatment with their doctors (74%) and the impact of HIV on their lives (71%), and only 39% indicated that they understand all the information shared by their doctors about the management of their drug treatment. The survey, which examined the breadth and depth of communications between people living with HIV and their doctors, was meant to complement drug company Merck’s national HIV education campaign, I Design, which boasts as celebrity spokesmen photographer Duane Cramer (who was on the cover of HIV Plus in July) and Project Runway All-Stars winner Mondo Guerra (who was on the cover in 2012). I Design is intended to empower people living with HIV to have open and meaningful discussions with their doctors. “As someone who has lived with HIV for close to 20 years, I know there are numerous topics to discuss during each visit to the doctor and can understand why many people may find it difficult to cover all of them,” said Cramer. “Preparing for discussions with my health care provider by prioritizing what I want to discuss about my medicines, my other health conditions, and relevant aspects of my life have been important factors to my HIV treatment plan over the years. This is what I encourage people to do as part of the I Design campaign.” Respondents admitted they wanted to spend more time discussing certain matters with their doctors, including how their current HIV drug treatment regimen is working (selected by 40%), other HIV treatment options (30%), health conditions they have other than HIV (30%), side effects of their current HIV medications (28%), and taking their current HIV treatment as directed (13%). Respondents also indicated they would like to spend more
time discussing the physical impact of HIV on their bodies (51%) and the impact of HIV on their sex lives (26%), day-to-day lives (25%), mental or emotional well-being (29%) and relationships with their loved ones or family (15%). Stopping Stigma, Helping MSM Gay, bisexual, and other men who have sex with men (MSM) represent approximately 2% of the U.S. population yet are the group most severely affected by HIV. In 2010, MSM accounted for 63% of all new HIV infections. That same year, MSM aged 13 to 24 accounted for 72% of new HIV infections among all people in that age group and 30% of new infections among all MSM. At the end of 2010, an estimated 489,121 (56% of the total) people with an HIV diagnosis in the United States were gay or bisexual men, or men who have sex with men but don’t identify themselves with those labels. Stigma Project cofounders Chris Richey and Scott McPherson (HIV Plus’s former creative director) talked about these stats and the need for honest conversations about HIV in the gay community) as part of their new Gilead-sponsored Engage campaign. Several posters with messages about getting tested were released as part of the campaign, which is aimed at getting people with HIV into treatment, engaged in their own medical care, and having safe sex and conversations about it (because 47% of gay and bisexual men have reported that they don’t wear a condom every time they have sex). Richey, who is HIV-positive, talked about moving past the stigma of being poz and into a life where he could not simply continue living but actually thrive as an out HIVpositive, gay man. Richey wasn’t the only person who talked about ending stigma; many presenters said that stigma itself was the number one thing that prevented people from getting tested. In a survey by Project Inform (see chart at right), 68% of HIV-positive people said that stigmatization was a major disadvantage to being poz. Sisters Were Doing It for Themselves Women were out in full force at the conference too, and some of the best presentations focused on trans women (56% of African-American trans women are HIV-positive) and how gender violence plays into HIV transmission and treatment. Meanwhile, an organization called Common Threads Marketplace, a microenterprise coalition of HIV-positive women, brought women from around the country to sell products in the exhibition hall. And the much-coveted USCA conference bag was made by former sex workers in Africa (who are paid a living wage and use recycled cloth). Participants got a beautiful reusable bag, but we also get to help women change their lives and the lives of their families. —Diane Anderson-Minshall and Jacob Anderson-Minshall
8 Biggest Disadvantages of being HIV+ the risk of getting side effects or health problems in the future 70%
the negative impact on my health in general 46%
the risk of infecting someone 45%
the stigmatization 41%
the side effects from my HIV medications 38%
the fatigue 36%
the daily use of HIV medications 32%
the shorter life expectancy 31%
very important disadvantage somewhat important disadvantage S urvey from usca 2013, C ourtesy project inform’s director of research advocacy
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G N I V MO
P U ON HIV or AIDS h it w le p o e p rogram gives p g in s u o h is ighter future r Th b a t a e c n a a second ch
penn turin pmiranda hoto s .c om
urtzel & K atie W tavia r A By David
â€˘ november /december 2013
Los Angeles is literally a city of angels, say some HIV-positive folks who’ve gone from homeless to housed, thanks to the Alliance for Housing and Healing’s Community Housing Options and Independent Supported Sites program. Clients in CHOISS (pronounced “choice”) include Angelenos of all ages (and their families) who are living with symptomatic HIV and dealing with another condition, like physical or mental disability or substance abuse. They are often poor and have been homeless or unstably housed; many of them are undocumented immigrants or people of color. CHOISS offers its clients safe housing at low or no cost, in one of the 120-plus apartments the program leases throughout Los Angeles County. The organization also provides furniture, appliances, and maintenance—something many of the clients haven’t had in years. To avoid discrimination, property managers are prohibited from screening CHOISS clients in advance. The people behind CHOISS say stabilizing clients’ housing situation helps them stabilize their physical and mental health, stay sober, and develop the skills they need to achieve independence. Since its 1998 founding, CHOISS has served more than 600 people, including 200 dependent children, according to the Alliance (AllianceHH.org). Here are just a few of their stories.
Charles: The Newfound Artist In his CHOISS apartment, Charles has found ways to express himself through painting, sculpture, and jewelry. His art is filled with cherry blossoms, blue skies, and tiny mirrors, conveying a bright happiness that stands in contrast to a past spent on the streets. Now living in Long Beach, he was a runaway teen who found himself homeless in Hollywood at 15. At 18, Charles became a born-again Christian. He thought God could provide the comfort he had been seeking. He went back to school, served as a missionary in Mexico, and worked in one of the homeless shelters in which he used to live. But religion came with contradictions. Charles, who is gay, was haunted by teachings against homosexuality, and he could not stop thinking about hell. His relationship with God has continued to be a journey. Charles believes that God, a concept he defines as bigger than a church, loves him and accepts that he is gay. He found his artistic side in the face of seri-
ous illness. “I was diagnosed with AIDS in 1994 and I thought I was going to die,” he says. “I still do sometimes.” But art has helped him cope, and it gives his turbulent inner life a voice. “I want to paint beautiful monsters,” he says. “I can’t quite figure it out yet, but it has something to do with being beautiful on the inside when your outside life is such a mess.” When he feels well enough, Charles volunteers as an art instructor at a local senior center. “But don’t call me a teacher,” he says. “The students are really good. I learn from them.” Inspired by his students and others, Charles works on his art and takes care of his health.
Murat: Sober and Loving It Growing up in the conservative Muslim nation of Turkey, Murat had no gay role models or any understanding of his sexuality. When he was 17, he had his first sexual experience with a
november /december 2013 •
man, and he thought they might be the only two people in the world who were doing this. He left Turkey for Saudi Arabia to discover a thriving underground gay scene. It wasn’t until he arrived in the United States that he understood what it meant to be out and proud. While living in Los Angeles, his newfound freedom introduced him to crystal meth. The drug took over his life, and he eventually lost everything. For two years Murat slept on the streets and dealt drugs. After getting arrested, he had to choose between jail or rehab. “Meth makes you care about nothing else,” Murat recalls. “Choosing rehab was the best decision I ever made.” His quiet apartment, provided through the Alliance, has a small balcony outside his bedroom. It is the perfect refuge while he works to regain his health, and you can bet he keeps it tidy. “I am a Virgo, so I like to be organized,” he explains. He has now been sober for five years and is active in recovery meetings, speaking at them whenever he can. He has a new goal now: to restart his life. He is thinking of enrolling in classes in the next academic year to become an accountant. Still, he takes it one day at a time.
Jesus: The Grandfather Sixty-five-year-old Jesus tears up when he
• november /december 2013
talks about his apartment. In a mixture of Spanish and English, he says, “It is so beautiful. I have furniture too.” To Jesus, who’s spent years on the streets, it’s a castle. Thirty-six years ago Jesus left his family and traveled from Mexico to California. His first job was in a McDonald’s, where he “ate too many hamburgers and wanted to be outside.” He found construction work, but the hours were long and tensions escalated at home with his wife and two children. Jesus found himself in court trying to save his marriage and family. He lost and walked away without a job or home. Eventually he stumbled upon a soup kitchen and stashed food in his pockets for later. Jesus spent seven years on the streets, three of those in cardboard boxes on L.A.’s famed Skid Row. He used drugs; he had sex with women, men, anyone, he says, who might help him survive. He went days without eating, causing his weight to plummet to 130 pounds and putting him close to death. Jesus still thinks about that time when he cooks a healthy meal for himself. Lorraine, his nutritionist, has shown Jesus how to prepare dishes that help to lower cholesterol, using the grocery vouchers from Alliance for Housing and Healing. His illnesses—AIDS, syphilis, advanced glaucoma, an injured knee, high cholesterol, and mental issues—are debilitating. He takes more than 34 pills a day, sees several doctors regularly, and has had operations on his eyes. On sunnier days, Jesus rides his bike around his neighborhood. “It is shiny, gray, and says ‘Comfortable’ on the side.… I keep it in the apartment. People tell me that a bike belongs outside, but it is a treasure. I would never leave it outside.” The bike was a gift from his estranged wife, with whom he is now on good terms. Jesus is also in touch with his son, daughter, and 16-year-old grandson. “The Lord gave me the chance to live when so many others died,” he says.
A Roof Over Everyone’s Head More than 1,300 low-income people and families affected by HIV will receive help from the federal government in securing regular housing this year. The U.S. Department of Housing and Urban Development recently announced plans to contribute $32 million to provide stable housing for this population, including those who have been homeless or are at extreme risk of becoming homeless. “These grants will provide our local partners with crucial funding that is necessary to provide individuals and families living with HIV/ AIDS a place to call home,” said HUD secretary Shaun Donovan when announcing the project in May. “The comfort of knowing that you have a roof over your head makes a huge difference in the well-being of families and gives hope to those who might otherwise end up on the streets.” HUD’s Housing Opportunities for Persons With AIDS will distribute the funding to 30 local programs in 20 states; these are programs that already annually assist more than 60,000 households by providing stable housing and job training, therefore reducing the risk of homelessness for people with HIV. —K.W.
a l l p or t r a i ts by tomm y bel l is simo; op p o si t e page: p hoto s .c om (2)
Johnny: The Buddhist “Now that I am sober, I hunger for life,” says Johnny. In fact, when the 44-year-old can find room in his budget, he splurges on ice cream. But for the most part, he is trying to balance his cravings with healthy foods, especially the vegetables recommended by his doctors to help him tolerate medications he takes each day to keep his HIV under control. Johnny tested positive in 1995. Like many others, he spent his youth partying a little too hard. Johnny ran with an older crowd while growing up in Los Angeles, smoking pot in junior high and dropping out of high school to travel around Europe with a boyfriend. He seems surprised that he survived when so many others succumbed to AIDS during the height of the epidemic. But he believes he is still here for a reason and wants to make his life count. Johnny discovered Buddhism, and he maintains his sobriety by following the Eightfold Path, attending group meetings at a mediation center. “I have worked hard to attend the meetings and be as helpful as I can,” he says. “Now I am the secretary of the group.” For the past 13 years, Barron, his black cat, has been Johnny’s constant companion. “He is so smart,” he says. “We talk to each other all the time.” Barron is both demanding and affectionate, an attitude
that also reflects Johnny’s new outlook on life. “My priority is myself,” he says. “It has to be.” Johnny and Barron share a cozy apartment provided by Alliance for Housing and Healing in Van Nuys. Before moving into this apartment, Johnny was in the hospital and then spent time at the Tarzana Treatment Centers. But now Johnny feels safe, secure, and on the road to a better life. Erik, Johnny’s caseworker, visits once a month to keep him on track. “I don’t know if I would be the same person without Erik,” Johnny says. “He is a major part of my support system in my sobriety.” Johnny feels like he is starting over, 20 years younger. “I am finally caring about myself. I feel like there is an inner child that I have to nourish with a positive outlook.” He likes to watch television with Barron and would love to have a job that takes him around the world again, but this time he wants to travel sober and healthy.
Yvonne: The Supermom Yvonne has lived more in her 38 years than most people do in a much longer lifetime. She has eight children and is about to welcome her second grandchild. Her days revolve around those children. Cooking, cleaning, and ensuring that the kids get to school on time, Yvonne is like any busy
mother. But she is living with HIV. Before Yvonne found out she was HIVpositive in 2008, she was suffering from yeast infections and terrible coughs. Being a health professional, she knew something was wrong. She had been working in nursing homes as a medical assistant and even helped do a school-related project on pregnant women with HIV. But Yvonne didn’t think that it would ever happen to her. “When I was in the waiting room I started praying,” she says. “As soon as I was told I had HIV I felt lost, empty. I remember going home and taking a long, hot shower… just scrubbing as hard as I could until I nearly bled because I felt dirty.” Her diagnosis started a downward spiral. She blamed her boyfriend for the infection, and the relationship soon turned violent. For the next year, she couldn’t leave her home. She lost her job, her house, and worst of all, her children. “I couldn’t face anyone,” Yvonne says. “I couldn’t continue normal life as it was. What else could go wrong?” During this difficult period, she had flashbacks of physical and sexual abuse she had suffered as a child, preventing her from moving forward. When everything seemed lost, Yvonne reached out to God for answers, and she found peace. “I knew I couldn’t do it by myself,” she says. “I needed God’s strength.” This gave Yvonne the will to take back her health—and her children. The Alliance for Housing and Healing found a stable and safe three-bedroom apartment for Yvonne and five of her children. Her favorite thing about her living space? The trees. “When I take my children for long walks and we just stare up at the leaves, it is so peaceful,” she says. “It is where God exists.” Yvonne plans on getting her trucking license to make a good living to support her children. Life seems back to normal now—so normal, in fact, that she almost forgets she has HIV. ✜
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ask & t e l l
MOMENT The Heavy D protégé, who became addicted to cocaine after losing her brother to AIDS, is back in top form
singer monifah carter rose to prominence in the 1990s working with rapper Heavy D. Nearly two decades later, she is still writing, producing, and singing, and she’s also starring in TV One’s top-rated reality series, R&B Divas. The show’s first episode reached almost a million viewers, a record for the network. This season Carter is reconnecting with her 22-year-old daughter, Akemi, who has been vocal about her disapproval of her mother’s two-year relationship with her partner, Terez. The songstress tells us about her struggles. 24
• november /december 2013
monifah: COURTESY T V ONE; fergie: courtesy INTERSCOPE RECORDS
You’ve used your celebrity to promote awareness of HIV. How do we get through to young people now?
I think the judgmental dialogue should cease. The dialogue has to be more honest; we have to deal with what is actually going on and stop being so sensitive. Shit is happening, so let’s deal with the issue. We have to address it, we have to meet these kids where they are and let them know that we have their back. We have to stop pointing the finger and help them navigate this thing. Give them the tools to love themselves and make better choices. You battled depression and substance abuse. Was being gay one of the reasons why?
No, actually, that was probably the least of them. It was more based in the things I had gone through as a child. A lot of people [who were] close to me died [throughout my childhood]. My sexuality wasn’t a big issue for me. There are a lot of gay people in my family, so the ice was broken. My brother—God rest his soul—whom I was very close to and helped raised me, he was 12 years older than me, his name was Kevin Carter. He was a gay man. It was so prevalent in my mind that it wasn’t a huge deal for me exploring my feelings for women. I didn’t feel frightful in that area, any resistance—I didn’t experience any of that. That definitely wasn’t the case. Your brother was gay and he died of AIDS. How did your mother react to you both being gay?
She was just like, “OK!” [Laughs] I was 22 or 23 when I met my first girlfriend, and I was just head over heels. I lived my life. We held hands, and she was like, “Oh, God.” It wasn’t a big deal; it just was what it was. You’ve always been ahead of your time. Your single “I Can Tell” seemed to have an innuendo about being [on the down low]. Did anyone react to that when it came out?
Yes, actually, another funny thing is I came up with the concept for the video. I wrote that treatment and codirected it with Sanaa Hamri, who was a very well-known female video director at the time. I was keeping it real, because in my social life, I’m in places where I’m looking at guys and it’s like, “Oh, my God, people in his family don’t know that he’s gay.” I knew [the guy I’m talking about] was living a double life, and I knew [other] people that were. Because my brother was sick at the time, I was understanding the effects of people not walking in their truth about their sexuality, and it was killing us, especially women. [HIV-positive men] not disclosing it to their female partners; it was killing us. We were completely dun-dun-dun [mimics a danger signal], not knowing and not believing that this shit was going down. I felt like it was my call to action that I had to say something and make people think a little bit. Not to bash men. But this is real, it’s a real thing. And we had to protect ourselves and open the dialogue. It’s not a big deal. That was my small way of expressing that. They wouldn’t even play the end of that video where there’s a guy in bed [with another man]. They think it’s me the whole time, but it’s another man. They wouldn’t play that video on BET, but they played Dru Hill’s “In My Bed” and two women were actually lying in the bed making love. It’s such a double standard, it’s so crazy. I get it, but I’m just not that silent.
STILL FERGALICIOUS The musician and new mom tells us how she’ll handle the HIV talk with her son When eight-time Grammy Award–winning musician Fergie was honored at Logo’s NewNowNext Awards earlier this year, the philanthropist and trendsetter joined the likes of past recipients Lady Gaga and Janet Jackson. Upon receiving the award for her work in the fight against HIV and AIDS, Fergie, a MAC AIDS Fund spokeswoman, told us, “I’ve had so many friends that have been affected by this disease, and it is a very near and dear cause to my heart.” Fergie, who gave birth to her first child with husband Josh Duhamel on Aug. 29, has devoted much of her altruistic energy this year to amfAR, the Foundation for AIDS Research, recently designing a lipstick called V.I.Pink for her Wet n Wild Centerstage Collection. She said Wet n Wild “stepped up and is giving a portion of the proceeds from the project to amfAR.” The former Black Eyed Peas front woman has been hosting a series of voguing balls benefiting amfAR. The fund-raisers culminated with the Life Ball in Vienna in May, and Fergie, who recruited dancers for the balls herself, is hoping to turn her experience into a documentary about the heavily gay and trans voguing culture. The pop star already knows how she’ll approach the issue of HIV with her son, Axl, even though he’s only a few months old. “I am going to be very honest with my child and informative,” she told HIV Plus. “I am a very open person myself about sexuality, so I am going to raise my child to have a very open mind and let my child make their own decisions.” She also said she will give her son the information he’ll need to stay safe and healthy. —Nick Pachelli
november /december 2013 •
Patient model. Pill shown is not actual size.
What is COMPLERA? COMPLERA is a prescription HIV medicine that is used as a complete regimen to treat HIV-1 in adults who have never taken HIV medicines before and who have an amount of HIV in their blood (this is called “viral load”) that is no more than 100,000 copies/mL. COMPLERA contains 3 medicines – rilpivirine, emtricitabine and tenofovir disoproxil fumarate. It is not known if COMPLERA is safe and effective in children under the age of 18 years. ®
COMPLERA® does not cure HIV-1 infection or AIDS. To control HIV-1 infection and decrease HIV-related illnesses you must keep taking COMPLERA. Avoid doing things that can spread HIV-1 to others: always practice safer sex and use condoms to lower the chance of sexual contact with body fluids; never reuse or share needles or other items that have body fluids on them, do not share personal items that may contain bodily fluids. Ask your healthcare provider if you have questions about how to reduce the risk of passing HIV-1 to others.
IMPORTANT SAFETY INFORMATION What is the most important information you should know about COMPLERA? COMPLERA® can cause serious side effects: • Build-up of an acid in your blood (lactic acidosis), which is a serious medical emergency. Symptoms of lactic acidosis include feeling very weak or tired, unusual (not normal) muscle pain, trouble breathing, stomach pain with nausea or vomiting, feeling cold, especially in your arms and legs, feeling dizzy or lightheaded, and/or a fast or irregular heartbeat. • Serious liver problems. The liver may become large (hepatomegaly) and fatty (steatosis). Symptoms of liver problems include your skin or the white part of your eyes turns yellow (jaundice), dark “tea-colored” urine, light-colored bowel movements (stools), loss of appetite for several days or longer, nausea, and/or stomach pain. • You may be more likely to get lactic acidosis or serious liver problems if you are female, very overweight (obese), or have been taking COMPLERA for a long time. In some cases, these serious conditions have led to death. Call your healthcare provider right away if you have any symptoms of these conditions. • Worsening of hepatitis B (HBV) infection. If you also have HBV and stop taking COMPLERA, your hepatitis may suddenly get worse. Do not stop taking COMPLERA without first talking to your healthcare provider, as they will need to monitor your health. COMPLERA is not approved for the treatment of HBV.
Who should not take COMPLERA? Do not take COMPLERA if you have ever taken other anti-HIV medicines. COMPLERA may change the effect of other medicines and may cause serious side effects. Your healthcare provider may change your other medicines or change their doses. Do not take COMPLERA if you also take these medicines: • anti-seizure medicines: carbamazepine (Carbatrol, Equetro, Tegretol, Tegretol-XR, Teril, Epitol); oxcarbazepine (Trileptal), phenobarbital (Luminal), phenytoin (Dilantin, Dilantin-125, Phenytek) • anti-tuberculosis medicines: rifabutin (Mycobutin), rifampin (Rifater, Rifamate, Rimactane, Rifadin) and rifapentine (Priftin) • proton pump inhibitors for stomach or intestinal problems: esomeprazole (Nexium, Vimovo), lansoprazole (Prevacid), dexlansoprazole (Dexilant), omeprazole (Prilosec), pantoprazole sodium (Protonix), rabeprazole (Aciphex) • more than 1 dose of the steroid medicine dexamethasone or dexamethasone sodium phosphate • St. John’s wort (Hypericum perforatum) If you are taking COMPLERA you should not take other HIV medicines or other medicines containing tenofovir (Viread, Truvada, Stribild or Atripla); other medicines containing emtricitabine or lamivudine (Emtriva, Combivir, Epivir, Epivir-HBV, Epzicom, Trizivir, Atripla, Stribild or Truvada); rilpivirine (Edurant) or adefovir (Hepsera). In addition, tell your healthcare provider if you are taking the following medications because they may interfere with how COMPLERA works and may cause side effects: • certain antacid medicines containing aluminum, magnesium hydroxide, or calcium carbonate (examples: Rolaids, TUMS). These medicines must be taken at least 2 hours before or 4 hours after COMPLERA. • medicines to block stomach acid including cimetidine (Tagamet), famotidine (Pepcid), nizatidine (Axid), or ranitidine HCL (Zantac). These medicines must be taken at least 12 hours before or 4 hours after COMPLERA. • any of these medicines: clarithromycin (Biaxin); erythromycin (E-Mycin, Eryc, Ery-Tab, PCE, Pediazole, Ilosone), fluconazole (Diflucan), itraconazole (Sporanox), ketoconazole (Nizoral) methadone (Dolophine); posaconazole (Noxafil), telithromycin (Ketek) or voriconazole (Vfend). • medicines that are eliminated by the kidneys like acyclovir (Zovirax), cidofovir (Vistide), ganciclovir (Cytovene IV, Vitrasert), valacyclovir (Valtrex) and valganciclovir (Valcyte).
A complete HIV treatment in only 1 pill a day. COMPLERA is for adults who have never taken HIV-1 medicines before and have no more than 100,000 copies/mL of virus in their blood.
Ask your healthcare provider if it’s the one for you.
These are not all the medicines that may cause problems if you take COMPLERA. Tell your healthcare provider about all prescription and nonprescription medicines, vitamins, or herbal supplements you are taking or plan to take.
The most common side effects reported with COMPLERA are trouble sleeping (insomnia), abnormal dreams, headache, dizziness, diarrhea, nausea, rash, tiredness, and depression. Some side effects also reported include vomiting, stomach pain or discomfort, skin discoloration (small spots or freckles) and pain.
Before taking COMPLERA, tell your healthcare provider if you: liver problems, including hepatitis B or C virus infection, or have abnormal liver tests • Have kidney problems • Have ever had a mental health problem • Have bone problems • Are pregnant or planning to become pregnant. It is not known if COMPLERA can harm your unborn child • Are breastfeeding: Women with HIV should not breastfeed because they can pass HIV through their milk to the baby. Also, COMPLERA may pass through breast milk and could cause harm to the baby
This is not a complete list of side effects. Tell your healthcare provider or pharmacist if you notice any side effects while taking COMPLERA, and call your healthcare provider for medical advice about side effects.
COMPLERA can cause additional serious side effects: • New or worsening kidney problems, including kidney failure. If you have had kidney problems, or take other medicines that may cause kidney problems, your healthcare provider may need to do regular blood tests. • Depression or mood changes. Tell your healthcare provider right away if you have any of the following symptoms: feeling sad or hopeless, feeling anxious or restless, have thoughts of hurting yourself (suicide) or have tried to hurt yourself. • Changes in liver enzymes: People who have had hepatitis B or C, or who have had changes in their liver function tests in the past may have an increased risk for liver problems while taking COMPLERA. Some people without prior liver disease may also be at risk. Your healthcare provider may need to check your liver enzymes before and during treatment with COMPLERA. • Bone problems can happen in some people who take COMPLERA. Bone problems include bone pain, softening or thinning (which may lead to fractures). Your healthcare provider may need to do additional tests to check your bones. • Changes in body fat can happen in people taking HIV medicine. • Changes in your immune system. Your immune system may get stronger and begin to fight infections that have been hidden in your body for a long time. Tell your healthcare provider if you start having new symptoms after starting COMPLERA.
You are encouraged to report negative side effects of prescription drugs to the FDA. Visit http://www.fda.gov/medwatch or call 1-800-FDA-1088. Additional Information about taking COMPLERA: • Always take COMPLERA exactly as your healthcare provider tells you to take it. • Take COMPLERA with food. Taking COMPLERA with food is important to help get the right amount of medicine in your body. (A protein drink does not replace food. If your healthcare provider stops COMPLERA, make certain you understand how to take your new medicine and whether you need to take your new medicine with a meal.) Stay under the care of your healthcare provider during treatment with COMPLERA and see your healthcare provider regularly. Please see Brief Summary of full Prescribing Information with important warnings on the following pages.
Learn more at www.COMPLERA.com
Brief BriefSummary Summaryofoffull fullPrescribing PrescribingInformation Information COMPLERA COMPLERA (kom-PLEH-rah) (kom-PLEH-rah) (emtricitabine, (emtricitabine,rilpivirine, rilpivirine,tenofovir tenofovirdisoproxil disoproxilfumarate) fumarate)tablets tablets ®®
Brief Briefsummary summaryofoffull fullPrescribing PrescribingInformation. Information.For Formore moreinformation, information,please pleasesee see the thefull fullPrescribing PrescribingInformation Informationincluding includingPatient PatientInformation. Information. What WhatisisCOMPLERA? COMPLERA? • •COMPLERA COMPLERAisisaaprescription prescriptionHIV HIV(Human (HumanImmunodefi Immunodeficiency ciencyVirus) Virus)medicine medicine
that thatisisused usedtototreat treatHIV-1 HIV-1ininadults adults
––who whohave havenever nevertaken takenHIV HIVmedicines medicinesbefore, before,and and ––who whohave haveananamount amountofofHIV HIVinintheir theirblood blood(this (thisisiscalled called‘viral ‘viralload’) load’)that that isisnonomore morethan than100,000 100,000copies/mL. copies/mL.Your Yourhealthcare healthcareprovider providerwill willmeasure measure your yourviral viralload. load. (HIV (HIVisisthe thevirus virusthat thatcauses causesAIDS AIDS(Acquired (AcquiredImmunodefi Immunodeficiency ciencySyndrome)). Syndrome)). • •COMPLERA COMPLERAcontains contains33medicines medicines––rilpivirine, rilpivirine,emtricitabine, emtricitabine,tenofovir tenofovir
disoproxil disoproxilfumarate fumarate––combined combinedininone onetablet. tablet.ItItisisaacomplete completeregimen regimentoto treat treatHIV-1 HIV-1infection infectionand andshould shouldnot notbebeused usedwith withother otherHIV HIVmedicines. medicines.
• •ItItisisnot notknown knownififCOMPLERA COMPLERAisissafe safeand andeffective effectiveininchildren childrenunder underthe theage age
ofof1818years yearsold. old.
• •COMPLERA COMPLERAdoes doesnot notcure cureHIV HIVinfection infectionororAIDS. AIDS.You Youmust muststay stayononcontinuous continuous
therapy therapytotocontrol controlHIV HIVinfection infectionand anddecrease decreaseHIV-related HIV-relatedillnesses. illnesses.
• •Ask Askyour yourhealthcare healthcareprovider providerififyou youhave haveany anyquestions questionsabout abouthow howtoto
prevent preventpassing passingHIV HIVtotoother otherpeople. people.DoDonot notshare shareororre-use re-useneedles needlesororother other injection injectionequipment, equipment,and anddodonot notshare sharepersonal personalitems itemsthat thatcan canhave haveblood bloodoror body bodyfluids fluidsononthem, them,like liketoothbrushes toothbrushesand andrazor razorblades. blades.Always Alwayspractice practicesafer safer sex sexbybyusing usingaalatex latexororpolyurethane polyurethanecondom condomtotolower lowerthe thechance chanceofofsexual sexual contact contactwith withsemen, semen,vaginal vaginalfluids fluidsororblood. blood.
What Whatisisthe themost mostimportant importantinformation informationI Ishould shouldknow knowabout aboutCOMPLERA? COMPLERA? COMPLERA COMPLERAcan cancause causeserious seriousside sideeffects, effects,including: including: • •Build-up Build-upofofananacid acidininyour yourblood blood(lactic (lacticacidosis). acidosis).Lactic Lacticacidosis acidosiscan can happen happenininsome somepeople peoplewho whotake takeCOMPLERA COMPLERAororsimilar similar(nucleoside (nucleosideanalogs) analogs) medicines. medicines.Lactic Lacticacidosis acidosisisisaaserious seriousmedical medicalemergency emergencythat thatcan canlead leadtoto death. death.Lactic Lacticacidosis acidosiscan canbebehard hardtotoidentify identifyearly, early,because becausethe thesymptoms symptoms could couldseem seemlike likesymptoms symptomsofofother otherhealth healthproblems. problems.Call Callyour yourhealthcare healthcare provider providerright rightaway awayififyou youget getany anyofofthe thefollowing followingsymptoms symptomswhich whichcould could bebesigns signsofoflactic lacticacidosis: acidosis: ––feel feelvery veryweak weakorortired tired ––have haveunusual unusual(not (notnormal) normal)muscle musclepain pain
• •Worsening WorseningofofHepatitis HepatitisBBinfection. infection.IfIfyou youhave havehepatitis hepatitisBBvirus virus(HBV) (HBV)
infection infectionand andtake takeCOMPLERA, COMPLERA,your yourHBV HBVmay mayget getworse worse(fl(flare-up) are-up)ififyou youstop stop taking takingCOMPLERA. COMPLERA.AA“fl“flare-up” are-up”isiswhen whenyour yourHBV HBVinfection infectionsuddenly suddenlyreturns returns ininaaworse worseway waythan thanbefore. before.COMPLERA COMPLERAisisnot notapproved approvedforforthe thetreatment treatmentofof HBV, HBV,sosoyou youmust mustdiscuss discussyour yourHBV HBVwith withyour yourhealthcare healthcareprovider. provider. ––DoDonot notletletyour yourCOMPLERA COMPLERArun runout. out.Refi Refillllyour yourprescription prescriptionorortalk talktotoyour your healthcare healthcareprovider providerbefore beforeyour yourCOMPLERA COMPLERAisisallallgone. gone. ––DoDonot notstop stoptaking takingCOMPLERA COMPLERAwithout withoutfirst firsttalking talkingtotoyour yourhealthcare healthcare provider. provider. ––IfIfyou youstop stoptaking takingCOMPLERA, COMPLERA,your yourhealthcare healthcareprovider providerwill willneed needtotocheck check your yourhealth healthoften oftenand anddodoblood bloodtests testsregularly regularlytotocheck checkyour yourHBV HBVinfection. infection. Tell Tellyour yourhealthcare healthcareprovider providerabout aboutany anynew newororunusual unusualsymptoms symptomsyou youmay may have haveafter afteryou youstop stoptaking takingCOMPLERA. COMPLERA.
Who Whoshould shouldnot nottake takeCOMPLERA? COMPLERA? DoDonot nottake takeCOMPLERA COMPLERAif:if: • •your yourHIV HIVinfection infectionhas hasbeen beenpreviously previouslytreated treatedwith withHIV HIVmedicines. medicines. • •you youare aretaking takingany anyofofthe thefollowing followingmedicines: medicines:
––anti-seizure anti-seizuremedicines: medicines:carbamazepine carbamazepine(Carbatrol, (Carbatrol,Equetro, Equetro,Tegretol, Tegretol, Tegretol-XR, Tegretol-XR,Teril, Teril,Epitol); Epitol);oxcarbazepine oxcarbazepine(Trileptal); (Trileptal);phenobarbital phenobarbital (Luminal); (Luminal);phenytoin phenytoin(Dilantin, (Dilantin,Dilantin-125, Dilantin-125,Phenytek) Phenytek) ––anti-tuberculosis anti-tuberculosis(anti-TB) (anti-TB)medicines: medicines:rifabutin rifabutin(Mycobutin); (Mycobutin);rifampin rifampin (Rifater, (Rifater,Rifamate, Rifamate,Rimactane, Rimactane,Rifadin); Rifadin);rifapentine rifapentine(Priftin) (Priftin) ––proton protonpump pumpinhibitor inhibitor(PPI) (PPI)medicine medicineforforcertain certainstomach stomachororintestinal intestinal problems: problems:esomeprazole esomeprazole(Nexium, (Nexium,Vimovo); Vimovo);lansoprazole lansoprazole(Prevacid); (Prevacid); dexlansoprazole dexlansoprazole(Dexilant); (Dexilant);omeprazole omeprazole(Prilosec, (Prilosec,Zegerid); Zegerid);pantoprazole pantoprazole sodium sodium(Protonix); (Protonix);rabeprazole rabeprazole(Aciphex) (Aciphex) ––more morethan than11dose doseofofthe thesteroid steroidmedicine medicinedexamethasone dexamethasoneorordexamethasone dexamethasone sodium sodiumphosphate phosphate ––St.St.John’s John’swort wort(Hypericum (Hypericumperforatum) perforatum) • •IfIfyou youtake takeCOMPLERA, COMPLERA,you youshould shouldnot nottake: take:
––Other Othermedicines medicinesthat thatcontain containtenofovir tenofovir(Atripla, (Atripla,Stribild, Stribild,Truvada, Truvada,Viread) Viread) ––Other Othermedicines medicinesthat thatcontain containemtricitabine emtricitabineororlamivudine lamivudine(Combivir, (Combivir, Emtriva, Emtriva,Epivir EpivirororEpivir-HBV, Epivir-HBV,Epzicom, Epzicom,Trizivir, Trizivir,Atripla, Atripla,Truvada, Truvada,Stribild) Stribild) ––rilpivirine rilpivirine(Edurant) (Edurant) ––adefovir adefovir(Hepsera) (Hepsera) What Whatshould shouldI Itell tellmy myhealthcare healthcareprovider providerbefore beforetaking takingCOMPLERA? COMPLERA?
––have havestomach stomachpain painwith withnausea nausea(feeling (feelingsick sicktotoyour yourstomach) stomach)ororvomiting vomiting
Before Beforeyou youtake takeCOMPLERA, COMPLERA,tell tellyour yourhealthcare healthcareprovider providerififyou: you: • •have haveororhad hadliver liverproblems, problems,including includinghepatitis hepatitisBBororCCvirus virusinfection, infection,kidney kidney problems, problems,mental mentalhealth healthproblem problemororbone boneproblems problems
––feel feelcold, cold,especially especiallyininyour yourarms armsand andlegs legs
• •are arepregnant pregnantororplan plantotobecome becomepregnant. pregnant.ItItisisnot notknown knownififCOMPLERA COMPLERAcan can
––have havetrouble troublebreathing breathing
––feel feeldizzy dizzyororlightheaded lightheaded ––have haveaafast fastororirregular irregularheartbeat heartbeat • •Severe Severeliver liverproblems. problems.Severe Severeliver liverproblems problemscan canhappen happenininpeople peoplewho whotake take
COMPLERA. COMPLERA.InInsome somecases, cases,these theseliver liverproblems problemscan canlead leadtotodeath. death.Your Your liver livermay maybecome becomelarge large(hepatomegaly) (hepatomegaly)and andyou youmay maydevelop developfat fatininyour yourliver liver (steatosis). (steatosis).Call Callyour yourhealthcare healthcareprovider providerright rightaway awayififyou youget getany anyofofthe the following followingsymptoms symptomsofofliver liverproblems: problems:
––your yourskin skinororthe thewhite whitepart partofofyour youreyes eyesturns turnsyellow yellow(jaundice) (jaundice) ––dark dark“tea-colored” “tea-colored”urine urine ––light-colored light-coloredbowel bowelmovements movements(stools) (stools)
harm harmyour yourunborn unbornchild. child.
Pregnancy PregnancyRegistry. Registry.There Thereisisaapregnancy pregnancyregistry registryforforwomen womenwho whotake take antiviral antiviralmedicines medicinesduring duringpregnancy. pregnancy.The Thepurpose purposeofofthis thisregistry registryisistotocollect collect information informationabout aboutthe thehealth healthofofyou youand andyour yourbaby. baby.Talk Talktotoyour yourhealthcare healthcare provider providerabout abouthow howyou youcan cantake takepart partininthis thisregistry. registry. • •are arebreast-feeding breast-feedingororplan plantotobreast-feed. breast-feed.You Youshould shouldnot notbreastfeed breastfeedififyou you
have haveHIV HIVbecause becauseofofthe therisk riskofofpassing passingHIV HIVtotoyour yourbaby. baby.DoDonot notbreastfeed breastfeed ififyou youare aretaking takingCOMPLERA. COMPLERA.AtAtleast leasttwo twoofofthe themedicines medicinescontained containedinin COMPLERA COMPLERAcan canbebepassed passedtotoyour yourbaby babyininyour yourbreast breastmilk. milk.We Wedodonot notknow know whether whetherthis thiscould couldharm harmyour yourbaby. baby.Talk Talktotoyour yourhealthcare healthcareprovider providerabout aboutthe the best bestway waytotofeed feedyour yourbaby. baby.
––loss lossofofappetite appetiteforforseveral severaldays daysororlonger longer
Tell Tellyour yourhealthcare healthcareprovider providerabout aboutallallthe themedicines medicinesyou youtake, take,including including prescription prescriptionand andnonprescription nonprescriptionmedicines, medicines,vitamins, vitamins,and andherbal herbalsupplements. supplements.
• •COMPLERA COMPLERAmay mayaffect affectthe theway wayother othermedicines medicineswork, work,and andother othermedicines medicines
––stomach stomachpain pain • •You Youmay maybebemore morelikely likelytotoget getlactic lacticacidosis acidosisororsevere severeliver liverproblems problemsifif
you youare arefemale, female,very veryoverweight overweight(obese), (obese),ororhave havebeen beentaking takingCOMPLERA COMPLERA for foraalong longtime. time.
may mayaffect affecthow howCOMPLERA COMPLERAworks, works,and andmay maycause causeserious seriousside sideeffects. effects.IfIf you youtake takecertain certainmedicines medicineswith withCOMPLERA, COMPLERA,the theamount amountofofCOMPLERA COMPLERAininyour your body bodymay maybebetoo toolow lowand andititmay maynot notwork worktotohelp helpcontrol controlyour yourHIV HIVinfection. infection. The TheHIV HIVvirus virusininyour yourbody bodymay maybecome becomeresistant resistanttotoCOMPLERA COMPLERAororother otherHIV HIV medicines medicinesthat thatare arelike likeit.it.
Especially Especiallytell tellyour yourhealthcare healthcareprovider providerififyou youtake: take:
• •an anantacid antacidmedicine medicinethat thatcontains containsaluminum, aluminum,magnesium magnesiumhydroxide, hydroxide,oror
calcium calciumcarbonate. carbonate.IfIfyou youtake takeananantacid antacidduring duringtreatment treatmentwith withCOMPLERA, COMPLERA, take takethe theantacid antacidatatleast least22hours hoursbefore beforeororatatleast least44hours hoursafter afteryou you take takeCOMPLERA. COMPLERA.
• •aamedicine medicinetotoblock blockthe theacid acidininyour yourstomach, stomach,including includingcimetidine cimetidine
(Tagamet), (Tagamet),famotidine famotidine(Pepcid), (Pepcid),nizatidine nizatidine(Axid), (Axid),ororranitidine ranitidinehydrochloride hydrochloride (Zantac). (Zantac).IfIfyou youtake takeone oneofofthese thesemedicines medicinesduring duringtreatment treatmentwith with COMPLERA, COMPLERA,take takethe theacid acidblocker blockeratatleast least1212hours hoursbefore beforeororatatleast least44hours hours after afteryou youtake takeCOMPLERA. COMPLERA.
• •any anyofofthese thesemedicines medicines(if(iftaken takenbybymouth mouthororinjection): injection):
––clarithromycin clarithromycin(Biaxin) (Biaxin) ––erythromycin erythromycin(E-Mycin, (E-Mycin,Eryc, Eryc,Ery-Tab, Ery-Tab,PCE, PCE,Pediazole, Pediazole,Ilosone) Ilosone)
The Themost mostcommon commonside sideeffects effectsofofCOMPLERA COMPLERAinclude: include: • •trouble troublesleeping sleeping(insomnia) (insomnia) • •abnormal abnormaldreams dreams • •headache headache • •dizziness dizziness • •diarrhea diarrhea • •nausea nausea • •rash rash • •tiredness tiredness • •depression depression
Additional Additionalcommon commonside sideeffects effectsinclude: include:
––fluconazole fluconazole(Difl (Diflucan) ucan)
• •vomiting vomiting
––itraconazole itraconazole(Sporanox) (Sporanox)
• •stomach stomachpain painorordiscomfort discomfort
––ketoconazole ketoconazole(Nizoral) (Nizoral)
• •skin skindiscoloration discoloration(small (smallspots spotsororfreckles) freckles)
––methadone methadone(Dolophine) (Dolophine)
• •pain pain
––posaconazole posaconazole(Noxafi (Noxafil)l) ––telithromycin telithromycin(Ketek) (Ketek) ––voriconazole voriconazole(Vfend) (Vfend) • •medicines medicinesthat thatare areeliminated eliminatedbybythe thekidney, kidney,including includingacyclovir acyclovir(Zovirax), (Zovirax),
cidofovir cidofovir(Vistide), (Vistide),ganciclovir ganciclovir(Cytovene (CytoveneIV,IV,Vitrasert), Vitrasert),valacyclovir valacyclovir(Valtrex), (Valtrex), and andvalganciclovir valganciclovir(Valcyte) (Valcyte)
What Whatare arethe thepossible possibleside sideeffects effectsofofCOMPLERA? COMPLERA? COMPLERA COMPLERAcan cancause causeserious seriousside sideeffects, effects,including: including: • •See See“What “Whatisisthe themost mostimportant importantinformation informationI Ishould shouldknow knowabout about COMPLERA?” COMPLERA?” • •New Newororworse worsekidney kidneyproblems, problems,including includingkidney kidneyfailure, failure,can canhappen happeninin
some somepeople peoplewho whotake takeCOMPLERA. COMPLERA.Your Yourhealthcare healthcareprovider providershould shoulddodoblood blood tests teststotocheck checkyour yourkidneys kidneysbefore beforestarting startingtreatment treatmentwith withCOMPLERA. COMPLERA.IfIfyou you have havehad hadkidney kidneyproblems problemsininthe thepast pastororneed needtototake takeanother anothermedicine medicinethat that can cancause causekidney kidneyproblems, problems,your yourhealthcare healthcareprovider providermay mayneed needtotododoblood blood tests teststotocheck checkyour yourkidneys kidneysduring duringyour yourtreatment treatmentwith withCOMPLERA. COMPLERA.
• •Depression Depressionorormood moodchanges. changes.Tell Tellyour yourhealthcare healthcareprovider providerright rightaway awayifif
you youhave haveany anyofofthe thefollowing followingsymptoms: symptoms:
––feeling feelingsad sadororhopeless hopeless ––feeling feelinganxious anxiousororrestless restless ––have havethoughts thoughtsofofhurting hurtingyourself yourself(suicide) (suicide)ororhave havetried triedtotohurt hurtyourself yourself • •Change Changeininliver liverenzymes. enzymes.People Peoplewith withaahistory historyofofhepatitis hepatitisBBororCCvirus virus
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CO M E
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ST I G M A
LIVE HIV NEU RAL.
Learn more about “HIV Neutral” at
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miranda penn turin
november /december 2013 â€˘
othing is ever as bad
as you anticipate it will be. Even the worst thing you can imagine is not so terrible when viewed from the inside. Because once you are inside it, it’s okay. Be aware of the potential worst. But don’t accept it in advance. The reason is that it may never arrive and so we must never overpay the illness. Current symptoms should be understood to contain the potential to improve or stay the same. Accept this state of fluctuation. The feeling of frustration one encounters when speaking to medical personnel is usually the result of “trying to get a handle on this disease,” to “know what to expect.” This is merely a coy rephrasing of one’s natural desire for structure and definition. It is only human to seek facts that can then be used to construct a sense of definition, if not certainty. But disease requires we live our lives fully and well, inside of the moment currently at hand and beneath the umbrella of uncertainty. Part of accepting disease is accepting that any or all of its potential features may apply to you at some point. This means facing the possibility of some frightening physical changes. But once we are diagnosed, we are within the disease. It is not an option now to return to a previous state of being. There is no “before” and there is no “after” because there exists only now. Before and after, then and tomorrow are ideas. They are concepts. These places do not actually exist until they do. Nobody wants severe symptoms. Nonetheless, they do occur. It is best to be aware that they may happen to you. Once diagnosed, you are automatically and irrevocably now one of the “other people.” These are the people who experience the awful things you, yourself, are immune from. So, while cancer may have once been something that happens to “other people,” now you are one of the other people. Anything can happen to you. In order for this to not be extremely terrifying, it is essential to understand what I told you before: even severe symptoms are not as severe when you are inside of them. Just as your car has airbags you never see during the course of normal, uneventful automotive ownership, so too does your human self contain a powerful ability to adapt that you may be entirely unaware of until this ability is activated within you.
hiv hiv plus plus
• • mnaorvcehm/ab pe r i/ld e2 0c 1e3m b e r 2 0 1 3
This is a fact: never “hope” you don’t get certain later-stage symptoms. When you “hope” not to get a set of symptoms, you automatically empower those symptoms. If hair loss appears to be inevitable, allow the hair loss to arrive but do not give the hair loss a police escort and a parade to make its arrival that much more impactful. Hoping one will avoid certain symptoms never prevents the symptoms. It only makes the possibility of their arrival all the more terrifying by infusing them with the parade of dread. If one day a new symptom appears, you will adjust and the new symptom will no longer be new. It is the unknown that we are compelled to fear and dread. It is the unknown that we see as the enemy. Once you are inside any given set of symptoms, they become a familiar part of you and the fear is drained away and replaced with the task of coping. It’s just like how if somebody showed you a photograph of your clean home as it would appear if occupied by a curious, energetic, uncoordinated, and filth-adoring 2-year-old, you might very well decide that goldfish and not children would better suit your lifestyle. But if you have such a 2-year-old and your house is currently in such a state of chaos, the mess is probably the last thing you care about. You are not moving into a new gated community where everything you know will now change. This is not a new lifestyle. You have not just purchased your first home beside a lake in Cancertown or AIDS Point. It is only a disease. And it becomes ordinary very fast. And it remains ordinary for as long as you live. So, do not become a couple with MS who still finds time for a dinner out. Be the busy couple that eats out frequently but is able to work MS into their schedule. This is what works best. I know, I have done it both ways. Never sit at the kitchen table dipping
crusty sourdough into olive oil and talking “realistically” about “how bad this could really get.” Disease does all the work for you. It was designed for the lazy. Your disease will inform you of what to worry about, when. Furthermore, two people with the same disease may face very different issues. If Jan went blind two months after diagnosis, this does not mean you should be online shopping for Braille flash cards. Likewise, if Jan experienced pain in her lower lip before she went blind, experiencing pain in your own lower lip does not mean you will now go blind as well. Only when a feature of the disease presents
“YOU ARE NOT MOVING INTO A NEW GATED COMMUNITY WHERE EVERYTHING YOU KNOW WILL NOW CHANGE. THIS IS NOT A NEW LIFESTYLE. YOU HAVE NOT JUST PURCHASED YOUR FIRST HOME BESIDE A LAKE IN CANCERTOWN OR AIDS POINT. IT IS ONLY A DISEASE. AND IT BECOMES ORDINARY VERY FAST.”
itself should that feature be incorporated into your life. There will always be new materials to read with respect to the disease. These will always be helpful unless they are frustrating. Either way, both the person with the disease and their Disease Bride should take lots of naps and have lots of snacks. When it all feels so daunting and confusing, dramatic and horrible, when you feel like, why even try? Take a nap. Naps are especially helpful during the overwhelming initial ramp-onto-the-highway phase. Knowledge is important but naps are more important. The details of treatment are often confusing. Cheese is easy to understand. Eat cheese. It helps to reward yourselves with things like real butter and cupcakes. Looks like both legs will have to be removed next Thursday? That means buttercream frosting. The doctor would like to review some lab results with you? If he is willing to go over the results on the phone: french fries. If he insists on seeing you in person: cheese fries. Don’t forget to always have soup on hand. Bad news should be followed with soup. Then a nap. Fight each new horror with an even richer treat. Why nobody tells you this is a great mystery: on the day you have a blood transfusion, a grilled cheese sandwich will be the best you have ever had. If the ability to walk is lost, brownies will taste better. This is a fact. The person who loses their ability to walk will care more about the brownies than about the walking.
Because if they have lost the ability to walk, they have accepted the loss. Walking was then, brownies are now. You would be amazed by what you can give up, lose, or break and yet still be a person who gets happy over brownies.
It only seems like I am kidding. ◆ Excerpted from This Is How by Augusten Burroughs. Copyright © 2012 by Augusten Burroughs. All rights reserved. Reprinted by arrangement with Picador and St. Martin’s Press.
november /december 2013 •
Great AND Powerful Osbourne
â€˘ november /december 2013
TV star Kelly Osbourne tells us why her generation will be the last to fight HIV and AIDS
By Sunnivie Brydum
elly Osbourne grew up in the spotlight. As the middle child of legendary rocker and Black Sabbath front man Ozzy Osbourne and his wife, Sharon, Kelly was accustomed to having a dad who jet-setted around the world, entrancing audiences with his heavy metal sound and genredefining music festival, Ozzfest. Kelly’s family life was put on an even wider public display when MTV cameras stepped inside the Osbourne mansion for four seasons of its hit reality show The Osbournes. These days Kelly Osbourne shines in the spotlight of her own accord. Kelly and her professional dance partner took third place in the 2009 season of Dancing With the Stars, and since 2010 she’s served as a panelist and presenter on E!’s Fashion Police. The 28-year-old appeared on the July cover of Cosmopolitan, sporting lavender hair, a broad smile, and a barrage of polka dots in several different iterations. But the cause closest to Osbourne’s heart is also one of her most recent endeavors. In May, Osbourne officially became the celebrity ambassador for generationCURE, a new campaign aimed at grooming the final generation of AIDS activists, coordinated by amfAR, the Foundation for AIDS Research. Launched in 2011, generationCURE arose from a small group of young professionals who formed a committee of fellow 20-somethings dedicated to helping amfAR speed up its search for a cure for HIV and AIDS. Last year generationCURE raised more than $50,000 toward its lofty goal to fund a new cure-focused research project that will cost $120,000. The central premise of generationCURE is that a cure for HIV and AIDS is in sight, and could be ready for commercial distribution within the lifetime of the millennial generation, the millions of people born between 1982 and 2004. Indeed, with perhaps 15 to 20 people already functionally cured of HIV, a commercially viable cure seems closer than it ever has before. And Osbourne is committed to being one of the young people helping to make that happen. “I have family that suffer from HIV and best friends that suffer from HIV,” Osbourne tells HIV Plus at a Los Angeles kickoff reception for generationCURE. “It’s been a part of my life since I can remember.”
GE T T Y IM AGE S
“The generation after me kind of missed [THE EARLY YEARS OF THE EPIDEMIC] and are less careful. They think, Oh, it will never happen to me. But guess what, asshole? It can.”
november /december 2013 •
Clockwise from left: Kelly Osbourne and Miley Cyrus share a kiss with Sir Elton John during the Elton John AIDS Foundation’s Oscar Viewing Party in February; Osbourne speaking at the genrationCURE Los Angeles kickoff event; Osbourne with Joan and Melissa Rivers after winning a Do Something award; amfAR CEO Kevin Robert Frost, Osbourne, T. Ryan Greenawalt, and Brad Greiner attend amfAR’s generationCURE Los Angeles kickoff party.
Even as a child, Osbourne knew that HIV and AIDS don’t discriminate. When the disease now known as AIDS first surfaced in the 1980s, scientists, doctors, and media outlets often referred to the it as the “gay flu.” “I used to say to my mum, ‘There’s no such thing as the gay flu, you know that,’ ” recounts Osbourne. “And she’d be like, ‘What do you mean?’ And I would say, ‘Mum…why would something only infect gay people? That doesn’t make any sense to me at all.’ ” Of course, Osbourne’s observations were spot-on, and the world soon learned that HIV can happen to anyone. That’s a message Osbourne also hopes to impart to younger activists, many of whom didn’t experience the mass deaths of loved ones in the early years of the epidemic. 36
• november /december 2013
“The generation after me kind of missed that and are less careful,” explains Osbourne. “They think, Oh, it will never happen to me. But guess what, asshole? It can.” While she’s never been one to mince words or play nice on serious issues like health care and protection, it’s clear that Osbourne has a big heart and is both passionate and compassionate about the fight against HIV and AIDS. “I’d be a hypocrite if I wasn’t,” she quips. Osbourne speaks earnestly about sitting at friends’ bedsides as their bodies adjusted to harsh but medically necessary antiretroviral therapy. “I’ve actually watched somebody who had to take antivirals, and be there to wipe up their puke and pull their hair back and
see the night sweats they go through and how much weight they lose or gain,” says Osbourne. “So to anybody that stands up and says, ‘Yes, I have it,’ my heart belongs to them. Because they’re sending a clear message, and they’re owning it.” Osbourne says that ownership inspires her, and she credits openly HIV-positive people for standing up, speaking out, and being counted. “Don’t look at yourself as a victim, look at yourself as a preacher,” suggests Osbourne. “Say, ‘I got this. I’m going to preach to you, and tell you how I got it. I wasn’t smart— don’t do the same thing I did.’ Don’t turn yourself into a victim, because then you are becoming what people say you are.” But Osbourne recognizes that since
CLOCK W ISE F ROM L EF T: GE T T Y IM AGE S FOR EJA F; GE T T Y IM AGE S FOR amFA R ; GE T T Y IM AGE S; GE T T Y IM AGE S FOR A MFA R
she’s HIV-negative, her advice might be seen as speaking out of turn. Of the expectation that positive people will speak out, though, “it’s easier said than done,” she says. “I don’t have it, but some of my family members and best friends do, so I give the best advice I can. Unless you really are suffering from this, it’s ignorant for me to even say that.” She’s also not oblivious to the discrimination and public shaming HIV-positive people face on a daily basis. Herself the victim of relentless bullying for her weight, her punky appearance, and her unapologetic snark, Osbourne argues that HIV has moved from being incorrectly labeled a “gay disease” to mistakenly connected to sexual promiscuity.
“It’s not about if you’re a slut or not,” says Osbourne. “You can be slutty. It’s about being stupid or not stupid.” Not that Osbourne thinks HIV-positive people are stupid. In fact, she has long felt a sense of solidarity with them. “I remember putting on a garage sale when I was about 10 years old for my mum’s best friend’s neighbor, who was HIV-positive,” she says. “I call it Philadelphia-ing, when you get fired [for being positive]; they totally Philadelphia-ed him.… We got rid of everything in the house we didn’t need—my mum’s furniture and clothes—and we made enough money for him to stay in his apartment until, unfortunately, he lost his life.” Stories like that are part of why Osbourne has committed to generation-
CURE, for the promise to keep fighting for medical advances that will find a cure for HIV within her lifetime. GenerationCURE, she says, is “so adamant about that, and that message is so clear and precise that it was something that I wanted to be a part of, to make sure that message does come across,” explains Osbourne about signing on as the campaign’s first celebrity ambassador. “With the technology that we have today and the fact that they cured an adult and a young person of HIV, it gives me so much hope that there really is a real cure out there. And with enough money and enough support from the world, that [researchers will] be like, ‘OK! Shut the fuck up; let’s get your cure.’ ” ✜ november /december 2013 •
who shone behind the scenes An HBO documentary reveals how involved Elizabeth Taylor was in fighting AIDS By trudy ring
â€˘ m a r c h /a p r i l 2 0 1 3
OP P O SI T E PAGE: c our tesy hb o
lizabeth taylor had a stellar film career, but a new documentary makes clear that her greatest role was that of AIDS activist, and her greatest costar was research scientist Mathilde Krim. The two women came together from different worlds to create the American Foundation for AIDS Research (now known as amfAR, the Foundation for AIDS Research), in 1985, early on in the pandemic. Their work and the breakthroughs it enabled form the subject of The Battle of amfAR, premiering December 2 on HBO. It’s the latest film from Oscar-winning director-producers Rob Epstein and Jeffrey Friedman (Lovelace, The Celluloid Closet, Common Threads: Stories From the Quilt). Fashion magnate Kenneth Cole, who chairs amfAR’s board of trustees, brought the idea to the filmmakers. “He called us out of the blue and pitched us this story, and we jumped at the chance,” says Epstein. They were gratified to not only tell the story of these extraordinary women but to also remind audiences that despite advances in treatment, AIDS has not gone away, and there is still much work to be done around the disease. “I think there is a sense of complacency, not just about supporting the research but about being safe,” Friedman says. When amfAR was founded, there was no complacency on the part of gay men and injection-drug users, as both groups were being ravaged by AIDS, but the rest of the world considered the disease someone else’s problem, and some even figured people with AIDS deserved it. Taylor and Krim helped to change those attitudes. The Battle of amfAR depicts Taylor’s devastation at learning her friend and costar Rock Hudson had been diagnosed with AIDS. It also reminds viewers that the epidemic hit close to home for Taylor in another instance: Her former daughter-in-law, Aileen Getty, has been living with the disease since 1985. Krim, a distinguished scientist with Hollywood connections—her husband, Arthur Krim, was the longtime chairman of United Artists and founder of Orion Pictures—approached Taylor about working together to fight AIDS. The women created a foundation that could make research grants more quickly than any government entity. Among amfAR’s many accomplishments, it has funded studies that were key to the development of protease inhibitors, which have made HIV manageable
“I think we were both surprised by how involved elizabeth taylor really was,” Friedman says. Adds Epstein: “we of course knew she was passionate, but we never really saw her in action.” for many patients; helped convince Congress to pass the Ryan White CARE Act, a primary source of federal money for community-based AIDS service providers; and financed research that may lead to a cure. In the service of their cause, Taylor and Krim used their intellect and charisma to reach diverse groups of people. The film shows how Taylor dazzled members of Congress with her star power and even persuaded old Hollywood colleague Ronald Reagan to break the silence on AIDS that characterized his presidency. Yet she was equally at ease counseling injectiondrug users. “I think we were both surprised by how involved Elizabeth Taylor really was,” Friedman says. Adds Epstein: “We of course knew she was passionate, but we never really saw her in action.” Taylor, who died in 2011, is remembered for her activism almost as much as for her film career, but The Battle of amfAR stands to raise awareness of her AIDS-related work even more. Mathilde Krim, though, is equally the star of the documentary. The film details what led her to a scientific career: As a young woman, having grown up in Switzerland in a largely apolitical family, she was shocked to learn of Nazi Germany’s atrocities, and her parents dismissed the reports as “propaganda.” So she decided “to replace all of this stupidity with facts, with real knowledge,” she says in the film. She earned a Ph.D. from the University of Geneva in 1953, making her one of the few women of the era with an advanced degree in the sciences. She pursued her research career in Israel and, after her marriage to Arthur Krim, in New York City, where she worked in cancer research before becoming amfAR’s founding chair. Epstein and Friedman describe Krim, now in her 80s, as a “force of nature,” and their movie indicates she’s not only an accomplished scientist and advocate but also a woman
comfortable in many environments. Jeffrey Laurence, amfAR’s chief science adviser, tells a story of her being charmed by a Mr. Leather at a gay pride parade, and footage of a dinner party shows her entertaining amfAR colleagues along with longtime showbiz friend Woody Allen, who speaks knowledgeably and eloquently about AIDS. Another attendee at the party was Regan Hofmann, a journalist, global health consultant, and amfAR board member who was diagnosed as HIV-positive in 1996. She “can’t say enough” about the work amfAR has done or the people behind it, she says. “I owe my life to amfAR, literally,” she explains, referring to the drugs, made possible by the foundation’s research, that have kept her alive. She points out, both in the film and talking with HIV Plus, that she’s one of the lucky ones—she has insurance and access to treatment. But constantly taking pills is no picnic. “You get tired of taking them, and they have side effects,” she says. So, she says, while there remains a need to assure that all those who require treatment can obtain it, and remind people, as the film does, that AIDS is still a huge global problem, it’s also important to work toward a cure— something that looks more and more like a possibility, even a probability. Hofmann and the filmmakers say they hope the documentary will get viewers thinking about this, as it notes advances toward a cure such as the case of “Berlin patient” Timothy Ray Brown, who has stayed HIV-free after a bone marrow transplant, even after going off antiretroviral drugs. “There is a legitimate hope for a functional cure in the lifetime of people living with HIV today,” Hofmann says. “This is an exciting time. I hope people who see this film will be inspired to finish the job.” ✜ The Battle of amfAR premieres December 2 at 9 p.m. Eastern/Pacific on HBO.
november /december 2013 •
Masters of Communication If you’re HIV-negative, here’s how to make conversations with positive people less uncomfortable. And if you’re positive, feel free to send these suggestions to the negative folks in your life By IAN FINKENBINDER
friend and i have a mutual acquaintance living with HIV, and the last time my HIV-negative friend saw this acquaintance he noticed some changes in their body. The acquaintance seemed bloated and lost weight in the face. My friend was concerned. He asked me, “Is it appropriate for me to comment, and how do I express concern without coming off as offensive?” Social situations relating to HIV are confusing. When I first tested positive four years ago, the search for mutually beneficial ways to interact with those not living with HIV put me into a murky and unknown region, and it’s taken me a long time to come up with answers. I’ve learned mostly through trial and error, but being on the receiving end of problematic statements and behaviors highlighted many boundaries that I hadn’t initially considered; society’s stigma taught me the etiquette that I prefer when talking with seronegative people. Here are ways people without HIV can better communicate with those living with the disease:
op p o si t e page: p hoto s .c om
1. Educate yourself. Again. HIV education isn’t just for those living with the virus. Learn terminology—do you know what a serodiscordant relationship means? Learn about possible side effects for HIV meds. If my friend had done some reading, he would have learned that many drugs used to treat HIV cause something called lipodystrophy. Essentially, this means that sometimes a drug will cause deposits of fat to shift to new locations on the body. When you educate yourself about HIV, you don’t just increase your own knowledge of the virus. Knowing about HIV also communicates a level of interest in your friend’s health. It means you care enough about what they are experiencing that you are prompted to learn about it on your own. Perhaps there is some facial wasting and increased belly fat in our acquaintance because of the drugs they are taking. Of course, we can’t possibly know this for sure without asking. Which brings us to... 2. Let HIV-positive people set the tone for discussions of their virus. My friend then asked me “Should I ask them about the changes in their body?” I answered with a resounding “No!” Lipodystrophy and other consequences related to HIV and the meds used to treat it can be a traumatic topic. Imagine you were undergoing the changes our acquaintance may be suffering—would you want people to point out something you may consider unsightly and embarrassing? I certainly wouldn’t, and I’m very open about HIV and how it affects my life. But that’s the thing; I choose the terms on which I discuss the virus. People around me feel comfortable asking questions about topics that I have broached: my meds, my
overall health, how I approach dating someone without the virus. So when discussing HIV with someone living with it, let them take the lead. This requires some sensitivity, patience, and listening, but it’s not a stretch to consider this probably the more important pointer on handling topics like this.
Ian Finkenbinder blogs as Ian Awesome at OneAngryQueer.blogspot.com. You can also follow him on Twitter @OneAngryQueer. He is a disreputable Occupy organizer and general rabblerouser living with HIV in the Pacific Northwest.
3. Make them feel human and not like a walking disease. This is perhaps the most difficult part when specifically discussing an individual’s health and relationship with their virus. Really, many of the tips I could give you regarding this boil down to the necessity of humanizing the virus and those who have it. If you’re HIV-positive and on dating sites, this becomes a huge problem. When negotiating a possible date or hookup, invariably I get asked “Are you undetectable?” The subtext, of course, is that if I have an undetectable viral load, it will be unlikely that I can transmit the virus. This question has several disturbing implications. (If I say yes, will they propose going without safer-sex practices?) The most offensive is the assumption that they have the right to that information. Is it anyone’s business but mine what my labs say? Also, when you minimize the virus with questions like that, you reduce HIV-positive people to a carrier of contagion. While some folks are not offended by this question, many are. You are changing them subtly from a person who lives with a disease to a source of contagion. Is this really how we should treat people who face stigma every day of their lives?
4. When in doubt, discuss it with someone else first. While it’s not always possible to do so, my friend had the right idea. Instead of reaching out to our acquaintance in a way that might be traumatic or embarrassing, he came to me. Personally, I had little at stake in the situation, so I could give some solid, unemotional advice from the perspective of someone living with HIV. Hopefully you know someone else who is open about being HIV-positive to bounce your question off of. So if that is an option for you, take it. If not, reach out to a local HIV and AIDS service organization to get some insight. Ask a medical professional. Ask anyone—as long as they have a good grasp of issues surrounding HIV. In the end, the most important thing to remember in this situation and others similar to it is to keep the humanity of your friend (or even a stranger) in mind. We live with the virus, yes. But we are more than just the virus, and we deserve to be treated that way. And it’s not hard to do—just be prepared beforehand with thoughtful analysis, an open mind, and a willingness to care. ◆
novemBER /december 2013 •
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DA ILY DO SE
making peace with hiv You don’t have to be grateful for your HIV, but you do need to coexist with it. Here’s how
p hoto s .c om
By GARY McCLAIN
e for e being diagnosed as HIV-positive, HIV may have felt like something other people were dealing with that didn’t have a lot of relevance to you—if you even thought about it at all. Even now, you may at times feel like HIV is a dream that you might at some point wake up from. Or even that if you keep telling yourself this isn’t happening, then it might just go away. But reality gets in the way. The pill—or pills— that you take every day. That little pill that swallows like a vitamin but works like a weapon. So you might be wondering, Am I living with HIV or am I battling HIV? When we talk about a medical diagnosis, we often refer to it in terms of war: the beast, the enemy. We refer to treatment as a battle. We refer to ourselves as fighters, struggling to maintain and survive in the face of this tremendous threat. This is not to say that HIV is your friend. Of course it isn’t. Chronic conditions like HIV do require that you do everything possible to protect yourself in any way you can from the progression of your disease. However, there is a flip side. Living with the mind-set that life is an ongoing battle is exhausting. It keeps you in fight-or-flight mode and turns on all of those unhealthy stress hormones that accompany it. The resistance kicks in and you
question why you have to be compliant with treatment and self-care. Basically, the constant battle mind-set can cause you to focus your energy on how you hate what the enemy is doing to you. Living with all of that resistance is a hard way to live. But then there’s that pill. The blood tests. Waiting to let out that sigh of relief when you get the results. The bumps in the road. Maybe more treatment decisions. HIV is like an uninvited houseguest who has taken up residence on your living room couch, who makes demands, interferes with routines, complicates your relationships, costs you money…and won’t move out. You’ve tried everything, you’ve tried to ignore him, you’ve had arguments, you’ve threatened, you’ve begged and pleaded. But he’s still there, blasting the TV and demanding breakfast in bed. So at some point you decide that since he doesn’t seem to be going away, you may as well stop fighting and learn to live with him. You decide to understand him and therefore understand what you can do to keep him in his place, but not to go through each day with your fists clenched and ready to swing. In other words: moving from “You’ve ruined my life forever” toward “How would you like those eggs cooked?” This attitude begins with making a slight
tweak in the question that is most likely on your mind. “What am I going to do about…?” becomes “What am I going to do with…?” “With” means coexisting with your HIV, living life on life’s terms. Taking a more balanced and peaceful approach to the struggle. Living with HIV doesn’t mean it has to be the focus of your life. But it does mean learning to accommodate your HIV status by making your self-care part of your daily life. And not living your life as if you had “HIV” tattooed on your forehead. Here are some ideas to keep in mind to help you maintain a peaceful, balanced approach to managing—by coexisting—with your HIV: Instead of baring your teeth and putting your fists up, swinging wildly in every direction, calmly face your opponent and coordinate your movements with his, as if you were looking at each other in a mirror. If you have ever watched a group practicing tai chi, a form of martial arts, then you know what I mean here. This begins by paying attention to him so that you can learn how he moves, know his rhythms, where he seems to be strongest, and where he might be vulnerable. Coexisting, but cautiously. Don’t fight with your own feelings. Let yourself feel how you feel. Don’t force yourself to smile and pretend everything is fine when you aren’t feeling well, physically or emotionally. You have enough on your plate without reporting yourself to the positive-thinking police. You can be optimistic but still have days when life just isn’t what you wish it would be. Recognize stress and address it. You can accomplish a lot more for yourself by imagining a sandy beach than imagining a boxing ring. Learn some ways to relax and stay calm. Stay educated. Working with your opponent means knowing all you can about him. Remember that knowledge is power. Get emotional and spiritual support. Be ready to call in the troops for backup when the battle fatigue sets in. The uninvited houseguest can be kept in his place. Face your HIV from a position of competence, calmness, and strength. Stay focused on what you can do to take the best possible care of yourself, day by day. Take your medicine. Live your life. Gary McClain, Ph.D., 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.
NovemBER /December 2013 •
cur e wat ch
While a widely available cure for HIV infection is likely some years away, this year has been marked by much hopeful news about advances. Here’s a look at some of the biggest stories
March Doctors report that a Mississippi child born HIV-positive and treated with antiretroviral drugs soon after birth has remained free of the virus at age 2½, even after several months without the meds. The child was treated earlier than most, within 31 hours of her birth, and received a high dose of the medications, which are likely factors in getting the virus down to undetectable levels. Soon after, French scientists report that 14 people in their study have been able to maintain low viral levels despite being off medication at least three years.
april Researchers in Denmark announce they are experimenting with a process that would bring HIV out of its hiding places to the surface of cells, where the immune system may be able to destroy it. The technique has been effective in tests involving human cells in a laboratory environment, so the team is moving on to a clinical trial involving human subjects, with a grant from the Danish Research Council. The scientists are using a class of drugs
called HDAC inhibitors, commonly used to treat cancer, to bring the virus out. “I am almost certain that we will be successful in activating HIV from the reservoirs,” Ole Søgaard, a senior researcher at Aarhus University Hospital in Denmark, tells London’s Telegraph newspaper. “The challenge will be getting the patients’ immune system to recognize the virus and destroy it. This depends on the strength and sensitivity of individual immune systems, as well as how large a proportion of the hidden HIV is unmasked.” Researchers elsewhere are studying HDAC inhibitors for this purpose as well.
• november /december 2013
Boston researchers report that two HIV-positive men whose viral levels became undetectable after bone marrow transplants have maintained that status even after discontinuing antiretroviral drugs. The men had received the transplants as treatment for cancer several years ago, and doctors affiliated with Brigham and Women’s Hospital in Boston announced last year that HIV was no longer detectable in the patients’ blood—but at that time they remained on medications. In the spring of this year, both men stopped tak-
july AmfAR, the Foundation for AIDS Research, makes a round of $1.4 million in grants for investigations into a cure. The projects are a British and American study that will develop and test a vaccine-like product tailored to each individual’s HIV; American-FrenchAustralian research into why a portion of patients’ HIV remains in a “reservoir” despite treatment, seeking insight in how to target the reservoir; another study on reservoirs, building on findings that there are many more cells involved than initially believed, and determining how to zero in on these cells with drugs; and an experiment in genetically modifying stem cells so that they have the capacity to kill cells infected with the virus, conducted by U.S. scientists.
summing it up These developments and others “provide tantalizing hope that a ‘functional cure’ may be possible,” Merck & Co. researcher Daria J. Hazuda writes on HIV Plus’s website. By “functional cure” she means “that people can remain HIV free without the need for antiretroviral therapy.” She adds, “Although these efforts are still very early, as in the early days of the HIV epidemic, the research community has a renewed sense of urgency and dedication to tackle the challenge of eradication.” —Trudy Ring
Why a cure could become reality
ing the drugs, and their viral levels remained undetectable months later. “Berlin patient” Timothy Ray Brown, the first man reported “functionally cured” of HIV after a bone marrow transplant, had received a transplant of cells with a genetic mutation believed to confer resistance to HIV, but the Boston men received transplants of ordinary cells. “I don’t want to use the ‘cure’ word,” Brigham physician Timothy Henrich tells The Boston Globe. “If they remain virus-free in a year, or even two years, after [stopping] therapy, then we can make a statement that the chances of the virus returning are very low.” He and fellow researchers stress that bone marrow transplants are difficult, risky procedures, not recommended for anyone who does not have cancer. But the Boston patients’ cases may help scientists better understand how HIV works in the body, advancing research toward a cure.
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