Noah’s story: The impact of shame and fear on those with HIV

A Detroit metro man is facing possible felony charges for failing to disclose his HIV status to his female sexual partner, but his story, experts and studies show, is not uncommon.

The man, whose identity will not be revealed, is facing possible criminal felony charges in metro Detroit after a Michigan state trooper disclosed his HIV status without his permission to his ex-girlfriend. Messenger has named the couple Noah and Susan.

Noah’s story with HIV began in 2007, while he was serving time in a court mandated alcohol rehabilitation center.

A person from a local health department came to the center to talk about HIV, and Noah decided to take the opportunity for an HIV antibody test.

“I said, ‘hey i have never done one, so why not?’” Noah said. “This was the first time I was deeply informed about HIV. I figured it’s a free test — there isn’t any reason not to take it. I never thought it would come back positive.”

A week later, the counselor returned, and Noah was told that he was infected with HIV.

“It was devastating. It was humiliating,” Noah says of the diagnosis. “I didn’t want anyone to know. I thought everyone was going to look at me as gay.”

Because he was in a treatment center at the order of the court, he was not allowed contact with the outside world.

He was allowed to go to an infectious disease specialist, who determined that his HIV was quite advanced. He was immediately put on antiretroviral treatment, which brought his viral load to undetectable and his immune system began to reconstitute itself.

When Noah left the treatment program, he tried talking to family and friends about his newly diagnosed status. His friends he says, stopped coming around. And some family members rejected him, demanding he not attend events like Thanksgiving because he was a “sloppy eater.” Family members feared the saliva from his “sloppy eating” would spread the virus to them.

He kept taking the medications, then slowly folded up his status and put it in his back pocket. He simply stopped talking about it, rather than risk rejection. When he met Susan, he says he demanded they use condoms at first, but as their relationship deepened and they talked about marriage and starting a family of their own, he said he did research into what the risk to Susan would be. Because his viral load — which is a medical test measuring the amount of free virus in blood, a determinate in infectiousness and disease progression — was undetectable, he felt based on the evidence there was no risk to Susan.

He decided not to tell her about his status, even as they decided to engage in sex without condoms. Noah continued to take his medications, which he says he hid in a multivitamin bottle in the couple’s home.

That failure to disclose his status has Noah facing potential felony charges here in Michigan. But experts say Noah’s stigma experience is not unique.

“Noah’s experience with stigma and societally-induced shame is familiar to virtually everyone with HIV,” says Sean Strub, who has lived with HIV since the 80s. He is also the founding publisher of POZ magazine, a publication by and about people living with HIV. “In a culture that continues to fear and blame people with HIV, and extracting a painful price in the process, keeping one’s sero-status a secret becomes, for many, a vital survival strategy.”

Strub also works with the Center for HIV Law and Policy in New York City as a senior policy adviser. The group launched the Positive Justice Project in September with a goal of repealing HIV-specific criminal laws in the United States.

“It is a tragedy when rejection by one’s family and community follows an HIV diagnosis. It is very difficult for many people who are living with HIV to handle the exclusion,” says Laurel Sprague of Global Network of People Living with HIV, North America (GNP+NA). Sprague lives in Michigan. “The result very often is that people internalize the stigma and feel like they need to hide their diagnosis. This is a predictable consequence of the failure by families and society to treat HIV-positive people with the compassion one would expect for those struggling with a potentially life-threatening illness.”

This combination of social and internalized stigma, Sprague says, make people like Noah targets for law enforcement.

“This situation demonstrates how HIV criminal laws, such as those in Michigan, exacerbate all of the problems with HIV stigma and discrimination,” says Sprague. “These laws set up law enforcement officers to view all people with HIV as potential criminals needing to be controlled instead of as vulnerable citizens needing protections.”

And two new studies released in advance of Wednesday’s World AIDS Day celebration, support the views of Sprague and Strub.

As many people were standing in line on Black Friday for special deals, a survey of people living with HIV around the world was released by GNPPlus. From July to September of this year, the group surveyed people living with HIV around the world about their experiences with HIV-related stigma and discrimination. The purpose of this consultation was to inform the development of good measures for studying stigma and discrimination around the world. The consultation involved an on-line survey and interviews with individual people living with HIV. Two hundred fifteen people living with HIV from the US responded to the invitation to fill out the on-line survey.

That survey found that those living with HIV often shied away from family gatherings (33 percent), romantic and sexual relationships (35 percent), and and community gatherings, like funerals and weddings (37 percent) rather than risk harassment or rejection. The study determined:

“These figures appear to suggest that many PLHIV (people living with HIV) pre-empt the painful experience of being excluded by opting not to try to participate. In the absence of this behaviour it is likely that rejection by families, communities and sexual partners might be even more severe than displayed in the above analysis.”

In addition, the survey found that respondents from North America, Europe, Australia and Singapore had suffered discrimination in employment and education in the previous year. Fourteen percent reported having lost income because they were HIV-positive, six percent reported being denied employment opportunities and two percent reported being denied access to educational opportunities.

That survey underscores the findings of Lambda Legal Defense and Education Fund’s report released earlier this week about stigma fueling an increase in the reports of criminalization cases involving those with HIV.

In recent years there have been many prosecutions across the country based on sexual activity by people with HIV, even when the sexual activity was consensual, there was no intention to transmit the virus, and the activity involved little or no risk of transmission and, in fact, did not result in HIV transmission.

The report highlighted the case of Daniel Allen, a Macomb County resident who was charged in 2009 with bioterrorism for allegedly biting his neighbor during a fight. Lambda and other groups working with people living with HIV filed friend of the court briefs with the Macomb County Circuit Court saying the prosecution of Allen increased stigma against HIV-positive people. Judge Peter Maceroni agreed with the defense, Lambda and other groups and rejected the bioterrorism charge in June.

President Barack Obama also took a swing at stigma associated with HIV in his Presidential Proclamation declaring World AIDS Day this week.

Our Government has a role to play in reducing stigma, which is why my Administration eliminated the entry ban that previously barred individuals living with HIV/AIDS from entering the United States. As a result, the 2012 International AIDS Conference will be held in Washington, D.C., the first time this important meeting will be hosted by the United States in over two decades.

Addressing stigma, including addressing criminalization of those with HIV, is a specific goal in Obama’s National HIV/AIDS Strategy, the first comprehensive review and goal setting effort by the federal government since the epidemic was identified nearly 30 years ago.

Noah says that the entire experience has made him realize that he has not really taken the time to understand his infection. He says he now understands the importance of disclosure as part of a relationship and wishes he had informed Susan of the infection.

Strub says that breaking down the stigma attached to HIV would help those like Noah to reach that conclusion sooner, regardless of what the law may require.

“Had Noah received the support necessary to combat stigma and become more empowered,” Strub said, “it is likely he would have had the ability, desire and strength to disclose his sero-status, protect his partner and meet the moral and ethical disclosure mandate documented in the Denver Principles (the historic 1983 manifesto that is the foundation of the people with HIV self-empowerment movement).”