You’ve got questions about HIV, we’ve got the answers.
Here’s what you need to know to stay healthy, protect yourself and others, and move forward with what should still be a long, happy life.
1. I just tested positive for HIV. Could it be a mistake?
Although false-positives aren’t common you should have a confirmatory test, basically a second test to verify your results. The likelihood of two false positives is extremely rare. If you took the at-home test, it’s a good idea to have a doctor or clinic run the second test.
2. My partner’s test was negative, are they in the clear?
Unfortunately, false-negative test results can happen too, so if your partner gets negative results and yours came back positive, it is wise to be cautious and have your partner retested. According to AIDS.gov, the likelihood of a false negative depends on the time between when you might have been exposed to HIV and when you take the test: “It takes time for seroconversion to occur. This is when your body begins to produce the antibodies an HIV test is looking for—anywhere from two weeks to six months after infection. So if you have an HIV test with a negative result within three months of your last possible exposure to HIV, the Centers for Disease Control and Prevention recommends that you be retested three months after that first screening test. A negative result is only accurate if you haven’t had any risks for HIV infection in the last six months—and a negative result is only good for past exposure.”
3. How did I get HIV?
This is a question you’ll ask and get asked exhaustively, and the bottom line is that you likely acquired the HIV virus by coming in contact with the blood or semen of someone who is HIV positive. The most common modes of transmission include unprotected anal or vaginal sex and sharing needles (regardless of whether they are for injecting drugs or medication like gender-confirming hormones). The CDC says it’s still possible to also acquire HIV through contact with blood, blood transfusions, blood products, or organ transplantation, “though this risk is extremely remote due to rigorous testing of the U.S. blood supply and donated organs.”
4. Is it my fault?
No. HIV isn’t some kind of karmic punishment. It is a virus that is communicable and therefore travels between people. Certain types of activities may increase your risks, but these still don’t make you “responsible” for being sick. We wouldn’t blame a diabetic for their diabetes even though Type 2 diabetes is preventable.
5. But I thought “tops” can’t get HIV?
Actually, the “top” or insertive partner in both anal and vaginal sex is less likely to contract HIV. According to one 2012 study, in the case of anal sex, tops have 86 percent reduction in transmission. But that still means tops can and do get HIV from having unprotected sex.
6. Is it true that a lot of people with HIV also have hepatitis C?
Yep. About 25 to 30 percent of people with HIV in the U.S. also have hepatitis C (or HCV). This is a concern because HIV causes HCV to move faster in the body, resulting in faster development of cirrhosis and end-stage liver disease. According to the Los Angeles Office of AIDS Programs and Policy, you can get HCV by sharing infected needles, sharing personal items that may have come into contact with blood (e.g., razors, nail clippers, toothbrushes, or glucose monitors); unsterilized tattoo or piercing equipment; or condom-less sex with someone who has HCV. Rough sex, sex with multiple partners, or having a sexually transmitted disease or HIV appears to increase a person’s risk for hepatitis C. The good news: while there’s no vaccine but there are new successful treatments for HCV now, so even if you’ve had treatment that failed there are newer options that could work. Talk to your doctor immediately.
7. Does being HIV-positive mean I also have AIDS?
Absolutely not. Confusing HIV for AIDS or using them interchangeably is one of the most frequent mistakes made by people and even media outlets. In the U.S., the majority of people living with HIV will never develop AIDS, the most advanced stage of HIV disease. HIV is the virus that causes AIDS, but for most people, proper treatment and regular medical care keep their immune system strong enough to prevent them from ever developing AIDS. An HIV-positive test result means only that: You have HIV. AIDS is its own diagnosis and many clinicians are moving away from the word itself and embracing the more descriptive “stage three HIV.”
8. Am I going to die?
Yes, but probably not anytime soon, and not because of the HIV. The truth is, with treatment, people with HIV can live as long and as healthy of a life as those without it. You’re more likely to die from a car accident than from HIV. There can always be complications, just as there are with any chronic condition (like diabetes, for example), and you will be susceptible to the same medical conditions that affect all people. There is some indication that conditions associated with aging (like osteoporosis) may become an issue for people with HIV earlier because of the long term impact of the lifesaving antiretroviral drugs you’ll need to take. But, to reiterate, as long as you continue treatment you can continue to live a long healthy life with HIV.
9. What if I’m black, or trans, or live in the South?
Okay, so here’s the sad truth: not every demographic has had the same chance of seeing positive health outcomes. People of color, transgender women, and people living in Southern states continue to have higher mortality rates from AIDS complications. Some of those disparities have to do with access to health care, poverty, substance abuse, and untreated mental health issues. But getting and staying on treatment is the first step in altering those disparities and there are government programs that can help you afford it. Reach out to your local AIDS organization for info.
10. When should I start treatment?
Right now. Ideally you should begin treatment as soon as possible, like the day you get your positive result. Early HIV treatment has been shown to provide long-term advantages. Even if you don’t have symptoms, if your infection runs unchecked it can compromise your immune system. Scientists think the longer you go without antiretroviral treatment the larger the hidden HIV reservoir can become. And the sooner you’re on treatment, the sooner you can lower your viral load and even reach undetectable levels where it becomes highly unlikely for you to transmit HIV to a partner. So get that prescription and start taking your meds right away.
11. Do I have to take antiretrovirals every day? Forever?
Yes, and no. Staying on your meds is hugely important and a 2015 study shows that only combining early treatment with continuous adherence gives patients the best hope of reaching a near-normal ratio of CD4 to CD8 cells. The nearer to normal, the more HIV-fighting cells you have keeping you well and giving you the health and longevity of someone without HIV. Those health benefits are nothing to scoff at. But doctors and pharmaceutical companies alike realize that maintaining a daily regimen can be a real struggle and new options are in the pipeline. Earlier this year, a bi-monthly shot was shown as effective as a daily pill (it may still be a year or two away from your pharmacy). So, yes, you do need to stay on your treatment religiously (pretend it’s like going to the gym or taking daily vitamins) but your treatment may not end up being a daily medication forever.
12. Does a positive HIV test mean I have to stop having sex?
Absolutely not. In fact, most doctors will encourage you to continue having a healthy sex life. Orgasms can be wonder drugs in themselves: They help you sleep, boost your immunoglobulin levels (which fight infections), and reduce stress, loneliness, and depression. But being positive does mean you’ll need to protect yourself and your intimate partners.
13. How do I protect my sexual partners?
There are a variety of ways to protect yourself and your partner, including honest communication about your status and risks, consistent condom use, having a partner who is on PrEP, keeping your viral load undetectable, and even choosing the right lubricant (avoid two ingredients: polyquaternium and polyquaternium-15, both types of polymers, which can increase the risk of HIV transmission).
14. What is “Treatment as Prevention?”
HIV medication reduces the amount of virus in an HIV-positive person’s blood. The goal is to reduce your “viral load” to a level so low it’s considered “undetectable.” Large-scale studies on both gay and straight couples in which one was HIV-positive and the other was not, have continued to demonstrate that when the HIV-positive person’s viral load is undetectable, the risk of transmission falls below 5 percent (even without the use of condoms). When you become healthier you reduce the chance of communicating HIV. If everyone with HIV was on treatment, we could prevent a significant percentage of new cases.
15. What is PrEP?
PrEP is short for pre-exposure prophylaxis. If you’ve read a condom box, you might already be familiar with the term prophylaxis, which is an action to prevent disease. Currently Truvada is the only FDA approved PrEP treatment—essentially a daily HIV prevention pill—but other medications are in the pipeline. (Find more PrEP answers at HIVPlus Mag.com.)
16. Do I have to disclose?
There are a number of reasons to tell your sexual partners that you have HIV and one is to protect them from acquiring the virus. But if you are using a condom or have an undetectable viral load or know your partner is on PrEP, it may seem irrelevant. And it may be irrelevant from a health perspective or maybe even an interpersonal one; but there’s one way it may matter a great deal, and that has to do with the law. Numerous states have HIV disclosure laws and in some of them it doesn’t even matter whether your partner becomes poz or not. Know what the laws are in your state and protect yourself.
17. Will I need to use a condom forever?
No. You can have condom-less sex that carries low risk, especially if you have an undetectable viral load and your partner is taking PrEP. Jeremiah Johnson, the HIV Prevention Research & Policy Coordinator for Treatment Action Group points to two studies, HPTN 052 and the PARTNER study, both of which found no new infections while the HIV-positive partner’s viral load remained undetectable. Another groundbreaking study, the Kaiser study in San Francisco, followed serodiscordant couples for several years and found not a single case of HIV transmission when the negative partner remained on PrEP.
18. So, I can throw away my condoms?
You probably shouldn’t (unless they’re expired). Even if you and your sexual partners are confident that the extra protection isn’t required to prevent HIV transmission, there are half a dozen other sexually transmitted diseases that you do need a condom to avoid getting. Remember, there are a lot of people out there with STDs who don’t realize they have them. Getting gonorrhea or syphilis can lead to serious health complications. Last year an outbreak of ocular syphilis occurred among mostly HIV-positive gay men and it permanently blinded several of them. Having HIV doesn’t prevent you from getting other diseases (or even another strain of HIV). In fact, it can make you more susceptible to them.
19. What about oral sex?
After former TV star Danny Pintauro came out, saying he thought he acquired HIV through oral sex, alarmists theorized about the dangers of oral sex. But, the media failed to mention that Pintauro’s body was ravaged by meth use, and he had open sores in his mouth at the time. Jeremiah Johnson tells us, “In 2014, the Centers for Disease Control and Prevention conducted a systematic review of existing research to estimate the risk of getting HIV through specific sex acts. They concluded that the risk of getting HIV from performing oral sex is low, citing a 10-year Spanish study of heterosexual couples with opposite HIV statuses where no new infections occurred after nearly 9,000 instances of giving head.” (In comparison, the CDC estimated that bottoming without a condom carries a transmission risk of 138 per 10,000 exposures). If no HIV is transmitted in 9,000 blow jobs, I think you’re safe. When ejaculation occurs during fellatio, the risk of HIV transmission rises; but you lower that to almost no risk if you pull out for the money shot. Meanwhile, performing cunnilingus on someone is extremely low-risk as long as the poz recipient isn’t menstruating.
20. Can I still have kids?
Yes. Medications can make it so there is less than a 1 percent chance of transmitting HIV between mother and child during pregnancy and birth. Sperm from an HIV-positive donor needs to be “washed” of HIV prior to insemination. The main difference for couples is that you’ll need a specialist who deals with HIV, fertility, and insemination. PrEP has also recently been prescribed by doctors off-label to prevent transmission during intercourse when couples are trying to conceive. If you want to adopt or foster parent, there are protections for HIV-positive parents-to-be that ensure you can’t be discriminated against.
21. How much do I need to tell health care workers offering me nonsurgical treatment?
All health care professionals use “universal precautions” to prevent the transmission of blood-borne diseases like HIV and hepatitis C to and from patients, according to Robert J. Frascino, MD, of the Robert James Frascino AIDS Foundation, and an expert for TheBody.com, Frascino says he’d recommend disclosing your status to your dentist, though, so that he or she could be on the lookout for HIV-specific problems in the mouth. “Health care professionals, including dentists, are trained to look for certain conditions more closely if they know you have an underlying medical problem, be that diabetes, cancer, HIV or whatever,” he writes. “Why would you not advise your dentist of your HIV status? If you feel that dentist would discriminate against you for being HIV-positive, that’s not the office you want to be treated in anyway, right? Being HIV-positive is not something to be ashamed of. It’s a viral illness.” The same is true for other health care providers: You don’t have to tell them, but it’s in your best interests and best health to do so.
22. Will being HIV-positive affect my ability to undergo gender confirmation surgery, plastic surgery, or gastric bypass surgery?
No. There was thought to be heightened risk from surgery, but a study published in 2006 in The Journal of the American Medical Association compared surgery data for both HIV-positive and HIV-negative patients and found that the two groups had the same level of complications from surgery. Moreover, medical workers are better educated about HIV than they once were, and the fear of positive patients has eroded. But you may still have to work harder to find a surgeon who has worked with HIV-positive patients, or if you’re transgender, a doctor who can work with both your HIV specialist and your confirmation surgeon.
23. What about hormone therapy for transgender people (or post-menopausal women)? Do HIV meds interfere with estrogen or testosterone levels?
According to the Well Project, some studies have shown that both HIV itself and some HIV medications can impact hormone levels. With that said, there are HIV treatments that won’t interfere with your hormone therapy. Work with your doctor to find the right medication regimen to control your HIV, stay on your hormones, and enable you to live in your authentic gender.
24. Do I need a special doctor for my HIV-related issues?
Yes. It is important to find a health care provider who specializes in HIV medical service right away. Sometimes your HIV testing center will recommend someone, or you can also ask your primary health care provider. Finding an HIV specialist who fits your needs is a huge first step after being diagnosed as positive. That person will literally be your lifesaver.
25. How do I find support centers or support groups near me?
Each state has its own toll-free HIV and AIDS hotline, and Project Inform has the full list at ProjectInform.org/hotlines. If you call Project Inform HIV Health InfoLine (800-822-7422), you can talk to nonjudgmental people (in English or Spanish) who will listen to you, share their experiences, offer you accurate information about HIV, and help you navigate health care obstacles and talk to doctors about your concerns.
26. If for some reason I’m bleeding, do I need to worry about people who are helping me?
This probably depends on the situation, but often the answer is no. HIV is rarely transmitted in a household between family members (outside of sex and injection drug use, of course). And, if, for example, you get hurt playing football or duking it out at the gym, it’s “highly unlikely that HIV transmission could occur in this manner,” according to the University of Rochester Medical Center. “The external contact with blood that might occur in a sports injury is very different from direct entry of blood into the bloodstream which occurs from sharing needles or works.” The same goes for blood on a Band-Aid or a nosebleed or a cut finger, says Lisa B. Hightow-Weidman, MD, MPH, an associate professor of medicine in the Department of Infectious Diseases, University of North Carolina-Chapel Hill, and an expert for TheBody.com. “There is no risk of getting HIV from blood that has been sitting outside of a human body. Even if the [person bleeding] was infected, HIV begins to die once it leaves the body and becomes unable to infect anyone else.”
One caveat: If you’re in a serious auto or other accident, the emergency medical techs who are helping you should be using universal precautions, but it’s always good for your own health to tell them you’re HIV-positive (it’s illegal for health workers to refuse you care based on your status, per the federal Americans With Disabilities Act).
27. How do I answer when people ask, ‘Can you get HIV from…’?
Start by telling them how it is not transmitted, since old myths die hard. Since the virus cannot survive outside the body, you cannot get it from toilet seats or shared cups or utensils. You can’t get it from kissing or from spit, since it’s not transmitted in your saliva. It is also not transmitted in sweat or urine. You can’t get it from a swimming pool, hot tub, sauna, mosquito or rodent bites, tattoos, or ear/body piercings. Only four bodily fluids are known to carry HIV in quantities concentrated enough to infect another person: blood, semen, vaginal fluids, and breast milk. According to the Centers for Disease Control and Prevention, it is one of these fluids from an HIV-positive person that must come in contact with a mucous membrane or damaged tissue, or be directly injected into the bloodstream (from a needle or syringe) for HIV transmission to possibly occur.
28. Is there a cure?
No. There has only been one “cured” patient who has continued to live HIV-free for more than half a decade: Timothy Brown, also known as the “Berlin patient.” He was cured via a bone marrow transplant that he received as treatment for cancer. Since his case a number of other people have been called cured, but those cases haven’t held up to scrutiny or time, with the virus reappearing in many individuals thought functionally cured. As David Margolis, head of the Collaboratory of AIDS Researchers for Eradication, explains, “Timothy Brown [has] probably been cured, and that’s a wonderful thing. But there are close to 80 million people that’ve been infected around the globe over the last century. So one in 80 million is not great odds. What it is, is proof of a principle: that a cure is feasible. But I want to manage expectations and convey the reality about this whole cure expedition, and that is: It ain’t gonna happen fast.”
29. It’s been 30 years, why isn’t there a cure yet?
Dr. Rowena Johnston, vice president and director of research at amfAR, explains there are roadblocks to curing HIV and they almost all revolve around “reservoirs,” pockets of virus that persist in tissues and organs even after a positive person’s viral load has become undetectable. Antiretroviral therapy helps contain any new viruses that these infected cells produce, but the blueprint for making HIV remains within an infected cells’ DNA. If treatment is stopped, there is nothing to prevent those new copies from being made, and they can quickly spread unchecked. Therefore, in order to cure HIV, we need to first find the reservoirs. “Locating all the places where HIV is hiding in the body is a bit like finding a needle in a haystack. A particular body part—such as the brain or the gut—can harbor a reservoir of HIV. Particular cell types, including immune cells that are found throughout the body and are not limited to one place, can also be reservoir sites. We will not be able to eradicate or neutralize this latent virus unless we know exactly where all of it is.”
30. What will it take for a cure?
Jerry Zach, MD, of the David Geffen School of Medicine at UCLA explains that HIV seems capable of “going to sleep” in these reservoirs, and because it’s not reproducing, doctors can’t detect or treat it. In order to eliminate the virus, doctors need to find ways to activate those reservoirs and make them visible for treatment with “latency reversing agents” to give patients with HIV who are being treated with antiretroviral therapy. Whatever is used to make those hidden reservoirs “turn on” needs to avoid making undetectable patients sick. Once the virus can “be seen,” Zach says the next step is to develop treatments to clear those infected cells and remove the sources of HIV from the body. He says that should lead to “eradication of the infection,” but real life examples like the Mississippi baby suggest that even low levels of the virus can later rebound and restart the infection all over again. The Mississippi baby was born HIV-positive but began antiretroviral treatment at birth before later being off the medications and appearing cured. But then the virus came back. Any HIV cure, Zach explains, therefore needs to offer “some extra protection,” something that stays behind to kill the virus in case any of it remains hidden and later rebounds. Different researchers are working on different aspects of this multipronged approach and each year new discoveries put us one step closer to finding a cure.
Reprinted from HIVplus magazine