So, You Just Found Out You Have HIV?

What are the first symptoms of HIV?
Initial symptoms of HIV are much like the flu: fatigue, fever, sore throat, body aches, headache, and swollen lymph nodes.

How did I get HIV?
You likely acquired the virus by coming in contact with the blood or sexual fluids 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).

My partner’s test was negative — are they in the clear?
Not necessarily. It takes time for what’s known as seroconversion to occur, the period after exposure when your body begins to produce the antigens and antibodies HIV tests are looking for. “The period between exposure to HIV and seroconversion is variable, but most people will test positive within several weeks of exposure,” according to the Johns Hopkins Bloomberg School of Public Health. Still, someone with a just-diagnosed partner should retest in three months to confirm their results.

Am I going to transmit HIV to my family and friends?
No. A lot of fear and misunderstanding still surrounds HIV, even though treatments have advanced in the past decades to the point that it is simply a chronic illness like diabetes. You, your family, friends, and even casual acquaintances may fear you’ll pass HIV to them. But the virus is transmitted via the kind of contact with sexual fluids and blood that you don’t generally have with family members and even close friends (except those with benefits). The Centers for Disease Control and Prevention is clear that HIV is not transmitted via saliva (spitting or kissing) or by sharing a toilet, drinks, or eating utensils.

Is it my fault?
No. HIV isn’t some kind of divine retribution. It is a virus that is communicable and therefore travels between people. Certain types of activities may increase your risks, but these don’t make you responsible for getting sick. We don’t blame diabetics for their diabetes even though Type 2 diabetes is preventable, so we needn’t assign blame for HIV either.

I thought “tops” couldn’t get HIV?
Although the receptive partner or “bottom” in anal sex is 13 times more likely to acquire HIV than the “top” or insertive partner, according to the CDC, tops still can and do get HIV from having unprotected sex.

Does being HIV-positive mean I also have AIDS?
No. Confusing HIV with AIDS or using the terms interchangeably are some of the most frequent mistakes made by ordinary people and even media outlets. In the U.S., the majority of people living with HIV will never develop AIDS, the most advanced stage. 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 stage 3 HIV and associated illnesses. An AIDS diagnosis only occurs if your CD4 cell count plummets below 200 and your immune system is so damaged that you are susceptible to life-threatening illnesses. Getting on and staying on treatment is the best way to ensure your HIV never develops into AIDS.

Am I going to die?
Probably not from HIV. A person diagnosed today has roughly the same life expectancy as a person who is HIV-negative. However, your virus does make you more susceptible to other health problems that you need to be aware of, including cardiovascular disease, kidney problems, and bone density loss. But these can be prevented with lifestyle changes and the right medication.

Why are health outcomes worse for some HIV-positive people?
People of color, transgender women, and those living in Southern states continue to have higher mortality rates from AIDS complications. Some of those disparities have to do with barriers to health care, racial inequalities and discrimination, 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.

Is there a cure for HIV?
Not yet. Although Timothy Brown (or "The Berlin Patient") has continued to live HIV-free for over a decade, he remains the only person to have been functionally cured for such a long period of time. (Researchers recently announced another patient has been HIV-free for 18 months, but scientists warn it’s premature to call that a cure; see the story on page 20.) At the 2018 International AIDS Conference in Amsterdam, researchers announced three major strategies scientists are focusing on in seeking a cure for HIV. The first involves reversing HIV latency — making it so the immune system can recognize HIV-infected cells that were previously invisible in reservoirs. This is called “blocking and locking” due to its goal of permanently stopping the virus from reproducing. The second has to do with using a variety of agents, such as neutralizing antibodies, to strengthen the immune system; it would probably require a combination of substances. The third involves genetically engineering cells to make them resistant to HIV or improve their ability to clear HIV-infected cells. This method has already been enormously successful in genetically-altered “humanized” mice and researchers hope to start human trials soon.

Do I have to take antiretrovirals every day? Forever? 
Yes and no. Staying on your meds is hugely important, and combining early treatment with continuous adherence is the best way to maintain your long-term health. But doctors and pharmaceutical companies alike realize that maintaining a daily regimen can be a real struggle, and new long-acting options are nearing approval. 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 for long.

What is an undetectable viral load?
Those on antiretroviral therapy can see their viral load (the amount of blood detectable in a blood test) reach undetectable levels. Also called viral suppression and defined as reducing the amount of HIV to less than 200 copies/ml, or becoming undetectable, has been proven to prevent HIV transmission.

What does U=U mean?
Undetectable equals untransmittable. The CDC has endorsed research findings that those who are undetectable are no longer able to transmit HIV, stating in 2017, “Across three different studies, including thousands of couples and many thousand acts of sex without a condom or pre-exposure prophylaxis (PrEP), no HIV transmissions to an HIV-negative partner were observed when the HIV-positive person was virally suppressed. This means that people who take [antiretroviral therapy] daily as prescribed and achieve and maintain an undetectable viral load have effectively no risk of transmitting the virus to an HIV-negative partner.”

So, I can throw away my condoms?
You probably shouldn’t. Even if you are virally suppressed and/or your sexual partners are on PrEP and you aren’t concerned about HIV transmission, you are still at risk for contracting other sexually transmitted infections. Getting gonorrhea or syphilis can lead to serious health complications, and new, antibiotic-resistant strains are threatening to heighten their potential to do lasting damage. Living with HIV can make you more susceptible to other STIs.

Can I still have kids?
Yes, you can still have kids if you are HIV-positive. The great news is that if you have your viral load suppressed to undetectable levels you likely won’t have to do anything special, as you can no longer transmit the virus. Still, if you are planning to make a baby the old-fashioned way, you should speak with a specialist first. For those whose viral load isn’t suppressed, there are specialists who deal with HIV, fertility, and insemination. If you’re a woman who is living with unsuppressed HIV, additional medications can also decrease your chance of transmission to your child. If you’re a man with detectable HIV, your sperm may need to be “washed” of HIV and then inseminated into your partner, wife, or surrogate. If you want to adopt, there are protections for HIV-positive parents-to-be that ensure you can’t be discriminated against by agencies.

Can I still breastfeed?
Federal guidelines currently recommend HIV-positive women not breastfeed and instead rely exclusively on formula. But nearly one-third of poz moms may be disregarding those recommendations, according to new research in the Journal of the International AIDS Society. Previous studies have shown the chances of HIV transmission are below 3 percent if an HIV-positive mom is on antiretroviral treatment prior and during breastfeeding. And ongoing research into viral suppression suggests that being undetectable means not being able to transmit HIV via breast milk.

What is HIV criminalization?
As of 2018, 26 states still had laws on their books that criminalize HIV exposure or nondisclosure. Most of these outdated laws were put in place back in the 1990s, before the development of today’s highly effective antiretroviral treatment, at a time when HIV was often a terminal diagnosis. Today, most HIV-positive people in the U.S. have been able to lower their viral loads to undetectable levels while on treatment, thus making it virtually impossible to transmit the virus to a sexual partner. Yet poz folks are still being arrested and charged for “exposing” partners to HIV despite being undetectable. Though some states, like California, have begun decriminalizing HIV, many others have not — so it’s important to educate yourself on the specific laws regarding HIV disclosure and exposure in your state. If you find yourself in trouble with the law due to your HIV status, check out the HIV Justice Network (HIVJustice.net), which has a wealth of information on the subject along with a HIV defense lawyer database.

Do a lot of people with HIV also have hepatitis C?
About 25 to 30 percent of people with HIV in the U.S. also have hepatitis C (or HCV). This can be a concern because those with this comorbidity are at higher risk for health issues like cirrhosis and end-stage liver disease. According to the CDC, the most common way hep C is transmitted is through the reuse or sharing of needles, but it can also be sexually transmitted, and having a STI or HIV can increase the risk of acquiring hepatitis C. The good news: there are new curative treatments for hep C.

Will being HIV-positive affect my ability to undergo gender-confirmation surgery, plastic surgery, or gastric bypass surgery?
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. Still, you may 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 gender-confirmation surgeon.

Do HIV meds interfere with estrogen or testosterone levels?
No. Studies show that antiretroviral medications don’t affect hormone levels and are safe for transgender people to take with their feminizing or masculinizing treatments. But estrogen may in fact impact the effectiveness of HIV drugs. The good news is a recent study of trans women using Truvada for the HIV prevention strategy PrEP found, while levels of the drug tenofovir dropped about 13 percent in the presence of estradiol (a form of estrogen), that was not enough to render it ineffective. Work with your doctor to find the right medication regimen to control your HIV while staying on your hormones and living in your authentic gender.