It wasn't so long ago that HIV/AIDS first emerged in the United States, but since the first diagnosed cases in the 1980s, things have changed. A lot. And definitely for the better. In 1994, AIDS became the leading cause of death among Americans between the ages of 25 and 44. These days, many more cases of HIV are diagnosed, and patients have access to antiretroviral drugs that have turned HIV from a fatal diagnosis to, in most cases, a condition that can be managed with medication.
Something else has change too. People aren't quite as ashamed of carrying the virus - and advocating for others. We talked to one very popular advocate, Josh Robbins of I'm Still Josh. His mission is to educate people about living with HIV - and bust the stigma around those living with the virus. We talked to Josh about some of the misconceptions around HIV that still remain.
Just Because Someone Has HIV Doesn't Mean It's Transmissible
One big message of early HIV awareness campaigns was about stopping the spread of the virus. While that was certainly a good thing, the fact that HIV was contagious definitely contributed to the fear and stigma around it. What's changed is that with current drugs, HIV-positive people can lower their "viral load," or the amount of virus in their system, to the point where the risk of transmitting it to others - whether via sexual intercourse or otherwise - is negligible.
"People living with HIV have been subjected to unfair and harsh stigma since the beginning of the epidemic. It comes from the public’s lack of education about the virus and the fear of transmission, Robbins said. "In the past few years, the HIV community as a whole has set out to live with HIV more publicly and a shift is happening in small circles that are beginning to accept the well-studied fact that someone undetectable is not capable of transmitting the virus - even without a condom. This message has been endorsed by every major HIV organization in the world, and even the CDC and NIH. What this has done is ease the fear of those assumed negative and allow people living with HIV to accept love and sex again. It’s really freeing."
For Those Living With HIV, Having Sex Has Its Dangers
We often assume that it's the sexual partners of HIV-positive people that have something to worry about. But the stigma against people with HIV means there are risks to those who carry the virus.
"In the past five years, the conversation [around HIV transmission] has focused more on personal responsibility - of both parties - during consensual sex," Robbins said.
In many cases, that has extended to legislation that criminalizes HIV non-disclosure, creating more stigma and discrimination and undermining effective public health campaigns.
"We have to prove we are innocent and that we disclosed when accused of not telling a partner about HIV. Everyone else charged of any crime enjoys the right of justice by being innocent until proven guilty. Activists like myself are working tirelessly to educate politicians of how unjust and unfair many of these laws are," Robbins says of the HIV criminalization laws present in some states as well as in Canada.
If You Are Diagnosed With HIV Today, You Are Unlikely to Die From It
A positive HIV diagnosis is no longer a death sentence thanks to modern treatment. In fact, most HIV-positive people can expect to live long and happy lives. And, with the most modern treatment protocol, that can be achieved with just one pill taken once a day.
"I wish I knew that I was not going to die from HIV, and probably nothing even related to HIV," Robbins said of when he learned of his diagnosis. "And I wish I would have already known that HIV was a chronic condition that I could still live healthily with."
People Diagnosed With HIV Need Support
As a public activist, Robbins fields questions and communicates with a wide range of people living with HIV. What he's found is that most of them just need someone to listen.
"I receive a large amount of questions from people who might or think they have been exposed and just want to talk to someone who understands. Or people that are just diagnosed and they don’t really even know what questions to ask, they just need someone to listen," Robbins said. "Many of these conversations happen privately on social media or through email or other messaging apps. It’s a big task to be open to people telling you their life history over an email on a Saturday night - when all we activists want to do is go to dinner and dance. But we all understand how important it is to respond to these people when we are approached. It never fails that I get message that stops me in my tracks when I am about to (and usually am already late) for a hookup!"
"HIV Awareness" May Not Mean What You Think It Means
If you don't have HIV and consider yourself careful when it comes to sexual safety, you might not think you need to be more HIV aware than that. But keep in mind that about 40,000 people are diagnosed with HIV in the United States each year, which means there are likely HIV-positive people in your community.
"HIV awareness doesn’t require a positive result to an HIV screening. It doesn’t require wearing a red ribbon once or twice a year. And it doesn’t demand a check or walking in an AIDS Walk anywhere," Robbins said. "Being aware about HIV simply means becoming educated about the virus, the risks, the modes of transmission and finding the lives of those living with HIV as still deserving of love, sex, justice, and being treated fairly and as a human."
In other words, being HIV aware means checking your prejudice, calling out stigmatization and questioning your assumptions.
"HIV awareness means explicitly not allowing fear and ignorance to drive the manner and ways an individual treats or reacts to someone living with HIV. We must all recognize the unique long-term survivors that need support and sometimes feel isolated. And we need to understand the racial disparities and the huge barriers to health that members in our community face just because of their financial status, ethnic background and heir ZIP code.
Robbins concludes that while HIV doesn't infect everyone, it does affect everyone in some way. So, now you now. What are you going to do about?