For several years, HIV diagnoses have been trending downward as the drugs used to manage the disease and prevent infection have improved. This good news for people fighting HIV and AIDS has also changed how organizations communicate about the disease.
On the 30th World AIDS Day, messages have shifted from simple HIV/AIDS prevention to forward looking campaigns such as Johnson & Johnson’s Make HIV History and the National AIDS Trust’s Let’s End It campaign. Those who communicate about HIV are faced with a challenge: how to celebrate the declining rates of the disease without ignoring its seriousness or those living with it.
"HIV communications used to be very stereotypical," explains Seema Kumar, VP of innovation, global health, and policy communications at Johnson & Johnson. "What I’ve seen happen is a move from a place where there was fear and a lot of stigma. It would show the devastation that HIV causes and use it as a call to action to get people to pay attention. Where we are today, you see messages of hope and messages of empowerment, resiliency, positive change, and science and innovation."
New diagnoses of HIV in the U.S. are slowly but steadily going down, according to the Centers for Disease Control and Prevention, with about 2,000 fewer people diagnosed in 2016 than in 2011. However, more than 39,000 people were diagnosed with HIV last year, and about 1.2 million people in the U.S. are living with the disease.
"When the numbers of people dying were high, it was dramatic," says Kyle Murphy, director of communications at AIDS United. "It’s still just as serious, but because people think it's not a risk for them; it’s something they don't need to to worry about. We need to do better about reaching folks and making sure we convey the universality of risk we all have."
Although overall rates of HIV infection are down, certain groups and regions have seen a spike or have been more affected. For example, the South has nearly double the rate of HIV diagnosis than the Midwest, according to the CDC, and gay men haven’t seen the same decline in diagnoses as other groups.
AIDS United and ViiV Healthcare are both part of a coalition formed for World AIDS Day that focuses on HIV in the South, called the Southern HIV Impact Fund. Marc Meachem, head of external affairs for ViiV Healthcare North America, says much of ViiV’s focus is on those who might otherwise be left behind by advances in HIV treatment.
"When we're talking about ending this epidemic, many talk about [the UN AIDS initiative] 90-90-90," Meachem says. (The campaign refers to the goal of 90% of people living with AIDS who will know their status and receive treatment for the disease by 2020).
"The critical thing is for us not to forget the '10-10-10' and how to reach them more effectively, focusing on the disparities and that everybody benefits from the same standard of care," he explains.
However, there’s a downside to focusing on these particular groups, Murphy adds. When communications are targeted on a group, it can create a stigma, he notes. Meanwhile, when targeting the general public, much of the communications focus on educating people about HIV, including diagnosis, treatment, and prevention methods like condoms or the PrEP pill, as well as the healthcare system, to prevent stigma.
Although organizations focused on HIV and AIDS may be well intentioned in educating or helping groups most burdened by HIV, it can create a negative perception of those groups, say experts. For instance, HIV was largely associated with gay men during the early years of the epidemic, a perception that has stuck for decades.
"We are trying to push back and enlist people in the fight while not sounding alarmist," Murphy says. "There's a fine line between fear mongering and stigmatizing groups, but also trying to convey the seriousness of the issue. Sometimes the challenge is being cognizant of the messaging. Some of our well-intentioned programming can actually be stigmatizing."
Part of reducing the stigma is ensuring that conversation is happening. Meachem points out a storyline about a couple with one HIV-positive partner in How to Get Away with Murder was a step in the right direction. Having that conversation helps people understand that HIV isn’t a death sentence and that there are many ways to treat and prevent the disease, he adds.
Johnson & Johnson is encouraging people to share photos, videos, and stories about people with HIV and demonstrate how they can get involved in the fight against the disease, while educating people about advances in HIV medicine.
"We don’t come to you with just the facts and figures of HIV," Kumar said. "It’s much more about empowering people to inspire others, rise up to a challenge, tell stories, share, and donate photos. It’s that kind of community centric idea that we’re all in this fight together."