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 Whole Body Health Liz Highleyman Caring for yourself as a woman with HIV means keeping an eye on more than just the virus. Liz Highleyman asks three top HIV doctors what exactly you should be looking for jsp content index subpage 1:1 start Finding a good doctor and getting emotional support belong at the top of any HIV positive person’s to-do list—male or female. But some of the health issues are a little different. “A positive woman must pay as much attention to her reproductive-tract health as she does to her viral load and CD4 count,” advises Vicki Cargill-Swiren, MD, director of minority research and clinical studies at the National Institutes of Health’s Office of AIDS Research. These are the main women-only concerns:
HPV Women with HIV are more vulnerable than other women to the human papillomavirus, or HPV, which can cause everything from genital warts to dysplasia—abnormal cells in the cervix or anus that can develop into cancer. Pap smears (a swab of cells) are your best weapon against HPV—your doctor can assess the results. “Thanks to [Pap smears] and aggressive treatment, we have not seen increases in cervical cancer,” reports Susan Cu-Uvin, MD, of Brown University’s obstetrics and gynecology department.
Meg D. Newman, MD, at the University of California at San Francisco’s Positive Health Program, recommends that women with CD4 cell counts below 200 (your doctor will test your blood for this) get Pap smears every six months. If your count is higher and everything checks out OK on your first two to three Paps after testing positive, you can generally cut visits down to once a year.
Herpes & chlamydia While you’re down there, make sure you get checked for other STDs, too. Genital herpes outbreaks can be harder to treat in HIV positive women and can increase the chances of transmitting HIV to your sex partner or baby. And chlamydia—common in all women—can lead to big problems later on if not treated with antibiotics.
Yeast Infections Frequent yeast infections may be an early clue that a woman has HIV. But Dr. Newman says these aren’t any more common in positive women—just harder to treat. If you’ve got that itch, don’t ignore it. Talk to your doctor.
Med Side Effects Some studies suggest women have more—or different—side effects from certain HIV meds. Women taking nukes, for instance, seem more likely than men to develop lactic acidosis (a condition that can cause weakness and shortness of breath). And in some early studies on protease inhibitors (PIs), women were more likely to have nausea, while men experienced more diarrhea.
Another complaint: body-shape changes, like expanding breasts and bellies or shrinking cheeks and derrières—signs of lipodystrophy, or lipo, a side effect of some HIV meds. The jury is out on whether lipo happens differently in women and men and whether or not fat gain is caused as much by age as meds. But lipo’s thinning is definitely related to the meds you’re taking—and can be a big problem for women. “My ass is just gone. It’s like a deflated balloon,” says “Jill,” who has been on and off HIV treatment for 15 years. If your body seems to be changing quickly, let your doctor know. You may be able to switch to a more fat-friendly drug.
THE PILL VS. THE CONDOM The pill can interact with some HIV meds, risking accidental pregnancy or an increased risk of pill-related side effects—or your body might not get as much of your HIV drugs as it should. Alternative birth control methods include hormone patches and injected Depo-Provera. Dr. Newman prefers condoms above all, however, because women with HIV need to worry about getting reinfected with another strain of HIV, contracting other STDs and, of course, preventing transmission to their partner. “We always recommend a barrier method,” she says.
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Yes! You Can Have A Healthy Baby by Liz Highleyman Positive women do it all the time. The best time to start planning for a safe pregnancy, supportive health care and an HIV negative baby is now. Liz Highleyman reports If having a baby is one of your dreams, HIV doesn’t have to stand in the way. Thanks to advances in treatment and prenatal care, the risk of mother-to-child HIV transmission is now less than 2% in the U.S.—down from about 25% in the early 1990s. And studies show that pregnancy has no effect whatsoever on your HIV infection. Whether you’re gearing up right now to expand your family or just want to make sure your body is in the right shape for that possibility later on, however, there are a few key things to think about. Step One: Think Ahead Getting healthy is the best thing you can do for any babies in your future—and for yourself. So don’t forget to think beyond HIV: Do you have diabetes or hepatitis? What about STDs? Women of color have a higher risk of preeclampsia (a life-threatening increase in blood pressure during pregnancy), and African Americans are more likely to have low-birth-weight babies. Dealing with any serious health problems before conception greatly improves your chances of having a successful pregnancy and a healthy baby. So how does a girl get pregnant? If you have HIV and he doesn’t, artificial insemination is your best bet. Some women do it themselves with a turkey baster (the man ejaculates into a cup and then one of you sucks it up with the baster and very gently places it inside your vagina), while others find professional help from a sympathetic clinic. If you both have the virus (or just your man does), sperm washing may be an option. The process—which is very expensive and still considered experimental—separates infected from uninfected sperm. (Contact Bedford Foundation Research at 617.623.7447.) Dr. Cu-Uvin recommends preconception counseling for couples where one or both is HIV positive. And Kelly Hill at BABES network in Seattle says: “Study up!” (Check out the websites on the back page of this POZ FOCUS for a start.) “The more informed you are, the more options you have,” says Hill, who, incidentally, didn’t let being HIV positive stop her from having a healthy baby of her own. Finally, when you’re ready to start trying to conceive—or if you unexpectedly find out you’re pregnant—find an ob-gyn who has experience working with HIV positive women. Start taking prenatal vitamins, including folic acid, which helps prevent birth defects—and seriously think about quitting smoking and drinking and getting help for any drug problems you may have. Step Two: Check Your Meds For most moms-to-be with HIV, the biggest concern is doing whatever possible to make sure the virus is not transmitted to their baby. Here’s what you need to know about the meds: If you’re already on an effective regimen, your doctor may recommend you stay put. If your combo includes AZT (Retrovir), Viramune (nevirapine), Viracept (nelfinavir) or Invirase (saquinavir), you’re ahead of the game. The first two have been shown to actually prevent transmission, and all four are considered safe to take during pregnancy (find out more at AIDSmeds.com). Most docs wait to add new meds until after the first trimester, but don’t worry if you need HIV meds the whole time: Even with early exposure, most of them don’t raise the risk of birth defects. Meds to avoid: Sustiva (efavirenz), because it may cause birth defects, and the Videx (ddI) + Zerit (d4T) combo, because it can cause fatal lactic acidosis in pregnant women. If you don’t need HIV meds yourself thanks to a high CD4 count and low viral load, your ob-gyn will still put you on something to prevent transmission of the virus to your baby. Dr. Newman worries that taking AZT or Viramune alone might encourage your body to become drug resistant. So she would opt for a triple combo that includes one or both of those drugs. Step Three: Plan Your Birth Now’s also the time to start considering your delivery options. If your viral load tests find your HIV “detectable,” then planning to have a C-section—before your water breaks—can reduce the risk of HIV transmission to your baby while you’re giving birth. But if your viral load is undetectable, the chances of transmission are already extremely low. And, in fact, says Newman, “If your virus is suppressed, a C-section could be more risky than a vaginal birth” (simply because of the heightened risk to anyone undergoing that kind of surgery). During your pregnancy, your doctor will test your viral load and CD4 count frequently to make sure your HIV stays suppressed. Don’t worry too much if your CD4 numbers go down—this is common, and they usually bounce back after you give birth. Also make sure your doctor watches your blood sugar, liver enzymes and blood cell counts. Step Four: Hello, Baby! Babies are born with their mothers’ immune systems, so they carry mom’s antibodies—but not necessarily the virus itself—for up to 18 months after delivery. To help put minds at ease, viral load tests can look for the virus in babies’ bloodstreams. But a final antibody test after 18 months is needed to confirm a negative diagnosis. Meanwhile, HIV positive mothers shouldn’t breast-feed, since there’s HIV in breast milk. Even after your baby is born, however, treatment guidelines recommend giving your baby AZT for the first six weeks. Jill gave her son liquid meds using the nipple from a baby bottle. “It was hard,” she says, “but we never missed a dose.” The long-term effects of these meds are not completely clear yet, but research shows that 20-year-olds who’d been exposed to HIV meds before birth or as babies seem to be doing just fine.
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June 2009 The L+ Word by Rachel Rabkin Pechman Lesbians living with HIV/AIDS may not register in the statistics, but they count as much as anyone else. jsp content index subpage 1:1 start Vanessa Campus has never had trouble discussing her sexuality. “I’ve been a tomboy since I was 11, and I grew into my sexuality at 16. I’m confident in being a lesbian,” says Campus, who is now 48 and was diagnosed with AIDS in 1996. She’s not afraid to talk with her doctor about being a lesbian either—but he doesn’t seem to share her comfort level. “He doesn’t talk about [my risk of] transmitting HIV to my partner,” Campus says. “It seems like it’s taboo for him to even bring it up.” Campus’s experience seems all too common, and the quality of medical care for positive lesbians may suffer as a result. “People get jittery when you start talking about lesbians with HIV,” says Kimberleigh Smith, director of the Women’s Institute at Gay Men’s Health Crisis (GMHC) in New York City—where 14 percent of their female clients identify as lesbian or bisexual. “For many women, as soon as you tell your doctor you have sex with women, a certain line of questioning stops.” Many people—even within the health care and lesbian communities—still think that lesbians aren’t supposed to get HIV/AIDS and that woman-to-woman sex poses no HIV transmission risk. This hobbles HIV testing efforts among lesbians, who often conclude that they aren’t part of the at-risk population. It may also keep doctors from helping HIV-positive lesbians protect themselves from other sexually transmitted infections. “We need to stop equating [sexual] identity with risk,” says Smith. “When a woman identifies as a lesbian, it doesn’t mean that she only has sex with women or doesn’t engage in other risky behaviors,” says Ana Oliveira, CEO of the New York Women’s Foundation and former director of GMHC. In fact, just the opposite is true, according to Amber Hollibaugh, chief officer of Elder and LBTI Women’s Services at Howard Brown Health Center in Chicago (and former director of the GMHC Lesbian AIDS Project/LAP). “Women who have sex with women fall into a multitude of categories where there is increased risk,” she says. They are often women of color. They may share needles. Or they may have sex with men in exchange for housing and food, to care for their children or to satisfy a drug addiction. “The reality of the epidemic is that people have complicated crossover degrees of risk,” Hollibaugh says, and this is especially true for lesbians. “Women who have sex with women are unseen—invisible!” Hollibaugh says. “As a result, it’s still considered appropriate to question whether lesbians can get HIV.” A lack of realistic statistics also keeps positive lesbians below the radar. “The CDC does a very poor job of asking the questions that assess whether a women identifies as a lesbian,” says Alicia Heath-Toby, program coordinator of LAP at GMHC. “Once a woman says she’s had sex with a man, she’s put in the heterosexual category. Once she says she’s used IV drugs, she’s put in the IV drug user category. This means we’re missing a lot of the lesbian-identified women living with HIV.” The errors continue in the privacy of the doctor’s office. “Both women and their doctors are unaware of the health risks of this population,” says Helena Kwakwa, MD, director of HIV clinical services at Philadelphia’s Health Department. “Because of that, you often have late [HIV] diagnosis and women who don’t alter their behavior before or after learning that they are positive.” Unlike Campus, many lesbians are afraid to talk openly with their doctors. “If you’re somewhere where it’s unsafe to talk about sexual partners, the last thing you’ll tell your doctor is that you’re sleeping with women,” Hollibaugh says. “Why tell? You know you’re going to be stigmatized.” “HIV/AIDS is spread by ignorance, shame, invisibility and lack of resources,” Oliveira says, “so we need affirming messages about women who have sex with women.” Where can lesbians go to get these messages, be counted and get help? Campus advises following in her footsteps. “What helped the most was finding groups of women at GMHC—some lesbian, some bisexual—who were just like me,” she says. “I was able to talk about my struggles, my insecurities and my low self-esteem, and we empowered each other.” Campus was also given GMHC’s Pussy Pack, a safe-sex kit for women that includes dental dams, finger cots and female condoms. If there is no HIV/AIDS organization near you with a lesbian-focused division, visit gmhc.org or join the women’s forum at poz.com. “The one thing I want to drive home is that wherever you are in your sexual expression is okay,” says Heath-Toby. “Know that you’re not alone.” Campus agrees. “I accepted my health status, got support and began to advocate for myself in every area of my life,” she says. “I learned that I do have a voice—and that my voice can be heard.” SAFER SEX Preventing woman-to-woman transmission of HIV It is possible for HIV-positive women to pass the virus to female sexual partners, though the risk is low (and documented cases almost nonexistent). “Absence of proof isn’t proof of absence,” says Helena Kwakwa, MD, of the Philadelphia Health Department’s HIV clinical services. (Kwakwa reported one case of lesbian sexual transmission, which seemed to involve shared sex toys, in Clinical Infectious Diseases in 2003.) Fisting, rough sex or anything else that may cause torn membranes and bleeding might pose an HIV transmission risk. - Rona M. Vail, MD, an HIV specialist at Callen-Lorde Community Health Center in New York City, helped POZ offer these safer-sex tips for lesbians:
- If you are positive, create an effective HIV treatment plan with your doctor. If your HIV/AIDS is well controlled, the risk of transmission decreases.
- Get tested and treated for other sexually transmitted infections (STIs). Unchecked genital herpes, gonorrhea and chlamydia not only create potentially serious problems for women, but also increase the risk of transmitting HIV.
- Don’t share sex toys, which can carry bodily fluids.
- Use protection (you might try finger cots) if you penetrate your partner when you have raggedy fingernails and recent cuts on your fingers. Sharp nails can tear vaginal membranes, and cuts can bleed during sex.
- Avoid oral sex during menstrual cycles or when a positive woman shows signs of irritation, sores, cuts or inflammation in either her mouth or vagina. Consider using barrier methods (such as dental dams) during oral sex.
- If you are a lesbian and you are HIV negative, get tested for the virus regularly, even if you only have sex with women
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