Voices

November 26, 2019

How We Can *Actually* Support People Living With HIV and Combat the Stigma Around It

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December 1st is World AIDS Day. Here at O.school, we’re talking about the progress that has been made in preventing and treating HIV/AIDS — and the work that still needs to be done in destigmatizing it, providing healthcare to all, and changing the ways we talk about people who live with HIV.

“This bathroom is infested with AIDS!”

The graffiti jumped out at me the second I stood up to exit the stall. My stomach lurched and my first thought was: Why, oh why, didn’t I put toilet paper down on the seat like my mother always told me to do in a public bathroom? My head began to spin with questions. Do I have AIDS? How will I tell my parents? And: Am I about to die?

It was the late 1980s, I was a child, and my understanding of AIDS — let alone of the HIV virus — was exceedingly limited. Some of what I did know was acquired through jokes that older kids made at school and from overheard news reports. A lot was obtained via the People magazines that arrived at my house once a week. These sources tended to make AIDS seem like a highly contagious death sentence that someone “brought upon themselves” after engaging in a dangerous activity.

Occasionally, though, the coverage or the conversation was a little different, like when it focused on babies born with the virus. Or when the subject was Ryan White, a boy from Indiana who had contracted HIV through a blood treatment for hemophilia and made the national news after being barred from attending school. The people in these stories were increasingly being referred to as innocent victims.

But of course, if they were innocent, it was pretty clear what that made everyone else living with the virus.

Thankfully, we are far from the early days of the epidemic. But while much has changed, we still have a ways to go. For one thing, although new HIV infections are on the decline, the Centers for Disease Control (CDC) report that almost 38,000 people in the United States received a new HIV diagnosis last year, and that about fifteen percent of the estimated 1.1 million people in the United States living with HIV do not know their status. 

There are a lot of reasons for this situation, including lingering stigma, a lack of access to healthcare, and huge education gaps. And while some issues are easier to tackle than others, there are actions that we can take in each of these areas to make things like getting tested, practicing safer sex, and disclosing one’s status to a partner possible for a greater number of people.  

Education 

A few years ago, I was teaching a college class. The topic of the day was sexually transmitted infections. Though it had been decades since an HIV positive diagnosis was tantamount to a “death sentence,” one of the students declared that they’d rather not get tested than find out they had contracted something that was just going to kill them. That statement reminded me that when key parts of the conversation are overlooked, we allow old information to linger. That’s why it  is crucial to make sure that we are up to date with research and news when we talk about HIV/AIDS.

Doing that means our conversations about prevention need to include information about getting tested and using barriers like condoms, as well as information about pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP). PrEP is the daily use of anti-HIV medication by HIV-negative people to prevent infection before exposure, and PEP is medication that can be taken after someone thinks they have been exposed.

In regards to testing, it is also often necessary to explain that, while back in the day, folks were advised to wait a few months after a possible exposure to get an accurate result, we now know that the virus can typically be detected within a matter of weeks.  A quick oral swab can give you information within a matter of minutes.

People also need to know that if results do come back positive, early antiretroviral  treatment is protective both for a person with HIV, and for any of their partners. This is called treatment as prevention (TasP), and it works by helping someone achieve an undetectable viral load. Being undetectable will help them maintain their health and also help prevent them from transmitting the virus to a partner.  

Of course, these conversations can only happen if we make space for comprehensive sexuality education. We typically associate sex ed with classrooms,  but these conversations can also happen in community groups, health care settings, via public education, or through social media campaigns. Whatever the forum, getting the word out is key!

Challenging Stigma

STIs are incredibly common. In fact, The American Sexual Health Association reports that fifty percent of the sexually active population will contract an STI by the time they are 25, and plenty of other folks will contract an infection later in life. 

Yet, despite their prevalence, stigma around STIs, and particularly around HIV/AIDS remains high. This makes it both less likely that someone will be aware of their status and less likely that they will share that status with partners if they are positive.

To help tackle these hurdles, we need to normalize living with HIV. Here are just a few ways to do that:

  • Use people first language, which puts a person before their diagnosis (so we’d refer to a person living with HIV rather than an HIV-infected person).
  • Avoid victim blaming and the narrative that a mode of transmission (say, drug use or sex), means that the infection is in any way “deserved.”  
  • Challenge discriminatory laws and policies (for example, laws uniquely criminalizing HIV, which can make it a crime for someone to not disclose their HIV status to a partner before having sex, and can infringe upon the privacy rights of people living with HIV).
  • Fight transphobia, homophobia, misogyny, and policies and practices that alienate and target sex workers, because keeping people margnizalized is a key driver of the infection.

Advocates have been working to destigmatize HIV/AIDS since it first emerged. And, certainly, there is far less stigma than there once was. But it is also clear that work still needs to be done.

Access to Health Care 

Depending on where you live, your access to health care will differ wildly. For people living in countries without universal health care, poverty or lack of access to insurance means that, when it comes to HIV, everything from testing to treatment can simply be out of reach

In the United States, where I live, even if people have insurance, the medications or providers whom are covered can vary wildly. There are programs designed to help folks who are uninsured or underinsured access HIV care. But for people from marginalized groups, who live in places with limited access to medical services, or who are from states that didn’t expand Medicaid, HIV care can still be out of reach. 

So what can we do? One thing, if you are able to vote, is to cast your ballots for candidates who will support comprehensive healthcare policies. Another is to make HIV testing part of everyday health care. More and more providers, and even some hospitals, routinely offer HIV testing— but if yours doesn’t, don’t hesitate to ask. Similarly, you can also reach out to local HIV/AIDS organizations or to your local health department to organize a testing event for your college, community group, religious organization, or workplace. Many agencies are more than happy to provide this service. 

For people who came of age after AIDS first emerged in the 1980s, it can be hard to imagine a time before we knew how to prevent the virus and when there were absolutely no treatment options. While those days are long in the past, there are still real barriers to combating the virus — but remembering how far we’ve come should remind us that we have the power to go that much farther.

Related Articles:

‘Queer Eye’s’ Jonathan Van Ness Is Breaking the HIV Stigma, Once and For All

How To Disclose That You Have An STI

6 Myths About Living With AIDS That We Need To Unlearn

A Surprising Amount of People Think You Can Get an STI from a Toilet Seat

Tips For Negotiating Condom Use

Ellen Friedrichs is a health and sexuality educator. Originally from Vancouver, she now lives in New York where she runs a middle and high school health education program, teaches at Brooklyn College, and answers anonymous questions on the OkaySo app. She is the author of the book "Good Sexual Citizenship: How to Create a (Sexually) Safer World." Her writing has also appeared in the Washington Post, the HuffPost, Healthline, and Rewire News. Find her on social media @ellenkatef.

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