Why Are So Many Americans Still Dying from HIV?

HIV isn’t supposed to be a death sentence—not anymore, at least. It’s now a manageable chronic disease. So how is it that there were 6,465 deaths in the United States attributed directly to HIV in 2015? That number far outstrips other industrialized nations. In 2011, the most recent year for which data is available, Canada saw a total of 303 deaths; the UK in 2015 saw 594. Per capita, the US sees over twice as many deaths as either. The reasons why are complicated, and reflect a potent, hard-to-dismantle mix of HIV-related stigma and barriers to treatment here in the US.

What makes those figures all the more troubling is that, in most cases, HIV-positive Americans won’t be denied access to treatment or care regardless of their financial or healthcare situation. Those who aren’t eligible for Medicaid or don’t have private coverage can still access HIV treatment through the Ryan White HIV/AIDS Program (named after an Indiana teenager who acquired HIV through a blood transfusion in 1984 and became a public icon for HIV education). But it’s facile to think that such access will lead people to actually start, and stay on, treatment.

“I think we have to remember that stigma is probably the most vicious impediment for people knowing their status,” said Jesse Milan, the president and CEO of the nonprofit AIDS United. According to Milan, too few Americans are being tested early and often, and too many HIV diagnoses come late in the disease’s progression to AIDS. Milan noted that this is especially true for African American men, the racial group most-afflicted by HIV.

Fear and stigma, too, prevent those who are diagnosed from seeking out adequate care and treatment. Alex Smith, the executive director of Equality Alabama, tells a story of a friend in Atlanta who had been open about having HIV when he was first diagnosed. His family, Smith said, was accepting—but their church wasn’t. “They spread the news quickly and told the family that his diagnosis was the result of wrongdoing, a righteous punishment,” Smith said. His friend soon denied that he was living with HIV altogether, claiming it was cancer instead.

“He ended up passing away a few weeks ago because he was not retaining care,” Smith said. He added that this is still a too-common fate for HIV-positive Americans, particularly among young African American men. 3,591 African Americans died of HIV-related illness in 2014, making up 53 percent of total deaths recorded that year.

“There are layers of stigma around HIV and masculinity in the black community,” Smith continued, “and I think that has an enormous effect on when people are tested, if they’re tested at all, and whether they are linked to and retained in care.”

Other factors compound and complicate the state of living with HIV in America today, like lack of education, HIV criminalization and physical treatment access for those living in rural or remote areas. Even with the Ryan White Care Act, one must seek out a designated Ryan White care clinic for treatment. If, for instance, you live in Demopolis, Alabama, the closest Ryan White clinic is about 48.5 miles away. That’s a near-impossible distance to traverse without a car.

“If you look at who is being diagnosed and who is dying, and who is most affected within the United States, it looks no different in other countries,” said Solange Baptiste, executive director of the International Treatment Preparedness Coalition, an HIV treatment advocate network. “It goes back to stigma, and, in a sense, lack of education about HIV, that some people still do not believe HIV is a problem.”

Watch VICE profile ACT UP and the fight against AIDS:

“I would say that HIV is inherently a political issue, because it is moralized,” Baptiste continued. “If we are honest, we know that governments will not prioritize those most affected by HIV—those who are often criminalized and most vulnerable. And that has everything to do with class, poverty, education, etcetera. Expanding insurance coverage—in the case of the US, with Medicaid—is a way to ensure that more people are being reached, assuming that you have adequately tackled issues of affordability and accessibility.”

It’s true. Access to care isn’t merely a social problem—it’s a political one. Many states, including most in the south, have been excluded from the expansion of Medicaid, a problem for HIV-positive people because Medicaid provides more robust healthcare options.

The result is that 72.5 percent of Americans diagnosed with HIV are in care, but only 55 percent are virally suppressed, meaning the virus has been reduced below levels where it can be detected in blood tests. “The American viral suppression rate could and should be higher in comparison to other similarly situated countries,” Milan says.

Despite the barriers, there’s lots being done to link more people to care. New York and San Francisco have become prototype cities, allowing for treatment on demand, meaning patients can access treatment upon diagnosis. Smith is enthusiastic about the advancements of telemedicine, which allows people with HIV to access care remotely through their computer or smartphone. This method addresses transportation issues, increases privacy and reduces internal or external HIV stigma one might experience by going to a clinic. Stigma can also be fought by training medical providers, educating people about the benefits of testing and treatment, or even working with faith communities to normalize people living with HIV.

“The public education around HIV is just not where it needs to be,” Smith says. “It’s still kind of stuck in 1992, and very much centers around Ryan White. We shouldn’t forget that and forget the impact that Ryan White had, and how Ryan White changed the face of HIV—but Ryan White is not the face of HIV anymore. I think getting public education to a point where it is in line with how HIV looks and is today is going to be one of the best things we can do.”

“I do not think we’re going in the right direction, but I do believe that maybe it’s time for the US to learn from the outside,” Baptiste said. “I think the US can learn from many of the other countries where HIV was a truly major issue and they’ve made some really strong strides to reduce the number of people living with HIV, the number of new incidents, interventions for young people, with gay men.”

Baptiste isn’t talking about Canada or the UK, but instead referring to places like South Africa, Malawi, Kenya, and Thailand, where HIV was once and is no longer a public health emergency—places where the virus still rages on, as it does here, but much has been done to address it. Rather than asking why America sees so many HIV-related deaths, the question should be what can be done to fix it.

Follow Mike Miksche on Twitter.