“Undetectable” is appearing more often when a person describes his or her HIV status. Whether it’s in medical labs, in person or on social apps, “positive” and “negative” are no longer the only options when it comes to disclosing one’s HIV status.
According to the Conference on Retroviruses and Opportunistic Infections (CROI), two recent, international studies spanning two years found that none of the positive participants with undetectable viral loads passed along the virus to their partners. The studies included both opposite-gender and gay male couples.
The original study, which began in 2011, found that transmission of the disease dropped by at least 96%. The partnership study, which had more same-sex couples participate, found an even lower risk of transmission through both vaginal and anal sex.
What that means statistically is that the maximum likely chance of transmission via anal sex from someone on successful HIV treatment that remains “undetectable” is 1%. Transmission chances increase slightly to 4% if there is ejaculation when the receptive partner is HIV negative.
However, there were no instances of HIV transmission in any of the couples in the study who strictly adhered to medical regimens.
At the CROI conference in March, presenter Alison Rodger said the likelihood of someone with an undetectable viral load transmitting HIV was so low that, her “best estimate is it’s zero.”
It’s a huge milestone in the fight against HIV/AIDS.
But by sheer definition, undetectable means “unseen” or “invisible.” What it does not mean, however, is “cured.”
Not yet cured
For seven years, James McCracken lived with his HIV-positive partner. Throughout their relationship, McCracken remained negative, despite foregoing the use of condoms in their sexual relationship..
“He was on medications and was undetectable,” McCracken recalls. “During that seven years, we had sexual relations almost every day, and I was very active in his health care.”
McCracken, who is now retired from nursing, was aware of the risks of unprotected sex with an HIV-positive man. He got tested every three months and remembers each agonizing wait for results—all of which came back negative.
“[Medical professionals] had already suspected that for someone with an undetectable viral load, it was nearly impossible to pass along the virus,” McCracken says. “I was aware of the risks and I was one of the first people to get the vaccination that came out in Atlanta, which was later proven ineffective.”
Despite that failed, early vaccination and the lax condom use, McCracken stayed negative throughout the tenure of the relationship. But when he and his partner broke up, McCracken relocated to Tampa Bay and soon came down with “the worst flu” of his life.
“It’s not like me to be sick,” McCracken says. “It was bone-shaking and I honestly felt like a part of my soul died. It was horrible.”
With his medical background and familiarity with HIV, McCracken knew he had to get tested again. That’s when he learned he was HIV-positive.
“After getting checked every three months and expecting a positive test, I guess I was desensitized,” McCracken says. “But I was still shocked at the positive test.”
McCracken, who is now 52 and learned he was positive at 40, says the man who infected him was a casual acquaintance. He also says he made some bad decisions following his breakup.
“I was at a low point in my life and didn’t take the necessary precautions,” he says.
Today, McCracken is now undetectable, and he’s upfront about his HIV status with friends and potential partners. He explains that being undetectable isn’t the same as being HIV-negative, but that the chances of him passing along the virus are very, very slim.
A women’s perspective
When “Hope” learned she was HIV positive in the mid 1990s, the heterosexual mother wasn’t surprised. She spent most of her teen years as a crack addict and remembers plenty of instances where she could have contracted HIV. She asked that her real name not be used for this story because her family is unaware of her medical situation.
In 1997, Hope was tested and had a viral load so high that she was diagnosed with full-blown AIDS. According to the Center for Disease Control, a patient diagnosed with full-blown AIDS will always be classified as such. However, within a year of her initial diagnosis at age 30, Hope received treatment, kept to her prescribed regimen and became undetectable.
“I had a very rough life before my diagnosis, so the diagnosis really didn’t have a big impact on me,” Hope recalls. “I just looked at it as another thing I needed to overcome.”
Fortunately, she was willing to follow the advice of the medical community.
“I worked a lot with my doctor and he and his staff showed me I wasn’t just a case file or another number,” she says. She asked that her real name not be used in this story. “He became a part of my life and he took the time to sit with me, explain what we were going to do and reassured me that I was going to be okay.”
Today, “Hope” works as an HIV counselor in Central Florida and helps newly diagnosed HIV clients learn how to manage their healthcare. She says that too many clients think that being “undetectable” gives them a free pass to practice unsafe sex.
That is a misconception, she argues.
“They believe they have carte blanche,” she says of some clients. “I try to explain to them that they have to invest in their life and keep themselves healthy. If you are promiscuous, you have to use protection. You have to use a condom and use every safety measure, like PrEP.”
PrEP, or Pre-Exposure Prophylaxis, is an HIV medication that is often used as preventative measure in those with a negative HIV status as well. The most common version of PrEP is Truvada, which is effective, but expensive.
Too many young people are getting infected with HIV, Hope says, and many may not know what preventative measures to take.
According to the Center for Disease Control, more than 1.1 million people aged 13-years and older live with HIV in our country. Of that number, 190,000— or 15%— aren’t even aware they are positive.
There are 50,000 new HIV infections reported each year in the United States, and a majority of those new infections are in young, gay men.
“With youthful exuberance comes a low literacy rate of really understanding the ramifications of their actions,” Hope says. “Sometimes they think they are like Superman and that nothing will happen to them. They have to be honest with themselves, even if they are undetectable, in order to protect themselves and anyone they have sex with.”
Undetectable then doesn’t mean undetectable now
Learning that one is undetectable is reason to celebrate. It’s an achievement thought impossible three decades ago when AIDS-related deaths occurred weekly, if not daily, among circles of friends. It’s a status that is as close to “cured” as we can get in 2014, but it’s also a status that can change.
According to Aaron Sanford, an HIV counselor and prevention specialist at Hope and Help in Central Florida, reaching “undetectable” is a benchmark for HIV-positive people.
“I always explain that while we use the term ‘undetectable,’ there are still HIV antibodies in your blood and other fluids,” Sanford says. “I also tell them that just because you were undetectable when you were last tested, that doesn’t mean you’re undetectable at this very moment in time.”
Sanford knows what he’s talking about. He has lived with HIV since 2007, is currently undetectable and plans to marry his HIV-negative partner next year.
“When you are undetectable, you still have the disease—but it’s controlled,” he explains. “It’s your responsibility to share your status with the people you date or sleep with.”
Sanford, now 32, did exactly that soon after meeting his fiancé.
“Bringing up HIV status is a personal decision,” Sanford believes. “I brought it up early because if I was rejected, I knew I wasn’t really attached yet. So I texted back and forth with him and told him I wanted to talk, have a conversation in person. Eventually he asked me if I was HIV positive, to which I said, ‘Yes.’ He told me that was perfectly okay.”
Sanford has assumptions as to who infected him with HIV, but decided long ago to not carry a grudge toward that individual.
“When you add stress, it hurts you and it hurts your immune system,” Sanford says. “That can make your undetectable status go away. Plus, I don’t want to go through life angry.”
Fortunately for Sanford, he had—and still has—a strong support network. He was able to get advice and treatment from family and friends and confided in them.
“If you don’t have that, go to any local HIV service organization,” he suggests. “People living with HIV understand what you’re going through. Once you have that support, begin your regimen and follow the rules. The faster you do that, the quicker you get to undetectable.”
A new era
More than three decades have passed since the beginning of the HIV/AIDS epidemic of the 1980s. What was once a terminal illness is now manageable and less-likely to make headlines.
It’s a much less terrifying time, especially for those who are newly diagnosed. But it’s important to not lose respect for the disease, according to Hope.
“This is not the disease that we knew 30 years ago—this is a new day,” she says. “You won’t die of HIV or AIDS. The CDC and other health organizations say that if you are diagnosed with AIDS around the age of 20, you will live until you’re 80! So you won’t perish from AIDS.”
Those who do perish, Hope adds, are those who do not adhere to their medicinal regimen.
“It’s like diabetes,” she says. “Take care of yourself the same way a diabetic would. It’s managed care and infesting in your life and health. You have to take the wheel of your life.”
Since first becoming undetectable 10 years ago, McCracken has managed to maintain that HIV status. It’s an accomplishment of which he is proud and shares that his tests are sometimes better than those who are HIV negative.
“But I would never say that undetectable is the new negative,” he says. “When you’re negative, you stay negative unless you get infected. When you’re undetectable there’s the chance you can become resistant to your medication or if you forget to take a dose your levels can change back to detectable. You’re playing with percentages and it takes diligence.”
It also means respecting the disease and those who may be at risk. That’s why McCracken is quick to share his status—to potential love interests and in a public forum like Watermark.
“There have only been a few times I’ve been rejected for being positive,” McCracken says. “But most of the time people say they appreciate the honesty and make their decisions from there. People are becoming more educated about it.”
Sanford reminds us that too many HIV positive people don’t even know their infected, which only contributes to the spread of the disease. Testing, he says, is the most important thing a person can do to fight against and, maybe eventually, eradicate the disease.
“It’s getting better, but there is still room for education,” Sanford says. “There was a recent study done on people living with HIV in major cities, and half didn’t know they had it and weren’t on medications. My doctor said to me that he would rather have an undetectable individual go out and have sex as opposed to a person who gets tested every three months and hopes for a negative test.
“And there are still some who think that if they are undetectable, they don’t have to disclose,” he continues. “You have to take responsibility. There is still room for education for people living with HIV and those who are HIV negative. It’s all of our responsibility.”
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