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Suffering in silence


Thirty-six-year old Samantha Glenn contracted HIV four years ago after having unprotected sex with her boyfriend. Glenn’s four children were the only ones who knew her status–until now.

“To this day, no one in my family knows. I kept it to myself. I told them I had cancer cells in my uterus,” Glenn said. “Lack of education and ignorance within my family prevented me from telling them the truth. This was easier for them to accept, but it’s like I’m leading a double life.”

Glenn cannot say with assurance whether or not her partner knew he had HIV. She is not bothered by the possibility of him knowing his status and failing to mention it to her.

“I wasn’t angry with him; I was hurt,” Glenn said. “I take sole responsibility, because I should have known to use protection.”

Sex is like a game of Russian roulette for more than 1 million people in the United States; and HIV is the gun. In the 30th year since the first reported case of AIDS was documented, researchers and those affected are commemorating the milestones they have reached. However, in light of these achievements, and in spite of the openness of such high-profile HIV-positive persons as Magic Johnson, it is a harsh reality that many HIV-positive people are ashamed to disclose their status.

Others, however, believe HIV-positive individuals should openly discuss their status in order to help eradicate the epidemic. Statistics clearly show they are not alone–so why is open disclosure an issue?

Glenn and countless others are choosing to suffer in silence because they believe HIV ignorance and lack of disclosure is embraced in the African American community.

“I had a fear of rejection,” Glenn said. “I wasn’t ready at the time, nor was I strong enough to accept it.”

This is a silent but deadly approach; one many researchers do not agree with. Despite Glenn’s experience, many researchers believe it is wrong to underestimate the amount of HIV education within the African American community. As of August 2011, African Americans represented approximately 14 percent of the population, but they account for an estimated 44 percent of new HIV infections, according to the Centers for Disease Control. With the community bearing this much of the burden, it appears as if everyone should know to proceed with caution.

“People do have some basic information on HIV,” said Cynthia Davis, assistant professor for the Medical Sciences Institute at Charles Drew University. “They want to know their status. They want to know they are clear.”

Davis strongly believes education is visible in the African American community, but she admits it was not always so.

“When I first started doing this work in the late ’80s, we would go out in the community and hand out literature and condoms. People would totally avoid our table,” Davis said. “After several years, people became more open to picking up the condoms in a public venue and asking questions.”

Glenn admits she was somewhat cognizant of sexually transmitted diseases, the dangers and the consequences. As a self-described hypochondriac, she never hesitated to learn her HIV status. She never missed the chance to schedule her annual physical. And during those visits, her physician always tested for STDs even when symptoms were not present. But one day Glenn’s physician called her in to deliver the unsettling news. Her initial reaction reflected her own lack of education and experience with the infection.

“I thought I was dying. I thought my life was over,” Glenn said.

Glenn’s initial thought is reflective of one of several HIV/AIDS myths and misconceptions, many of which could be eradicated with education.

Early on in the epidemic, death rates were very high. Now, drugs allow people to live much longer. Additional misconceptions surround medication and treatment. Many people believe HIV-positive people are prescribed a cocktail mix of medication to control the disease. However, depending on the individual, it is the exact opposite.

“I just started medication this year,” Glenn said. “My infection was detected within the first three months. Therefore, my immune system was healthy enough to fight the virus itself. That’s what it has been doing for the past three and a half years. I chose to go on medication this year because I was taking other medication that was compromising my immune system.”

HIV education and prevention methods are posted everywhere around Los Angeles. Posters, events, billboards, and public-service announcements are scattered across the city, but many people are unaware of their status. According to the CDC, approximately one in five adults and adolescents in the U.S. are unaware they are living with HIV. This translates to about 116,750 people in the African American community.

“People will tell you they don’t want to know,” Davis said. “A lot of people don’t want to disclose their status because they are afraid they will be abandoned. It’s not talked about regularly in our community, but African Americans are suffering the biggest burden.”

As the HIV/AIDS epidemic continues to grow, education may be the only chance for survival.

Chances of survival are reduced, when HIV-positive people are discouraged from disclosing their status and from putting themselves at the forefront of their communities in order to increase awareness. The stigma associated with the disease is apparent at all levels of society, but especially in the African American community. Various things have caused the stigma, but HIV-positive people hope to de-stigmatize the disease by gaining acceptance.

“There is such a big stigma around the name,” Glenn said. “I had no education about it back then. I was ignorant to it until it was forced upon me. Now I’m strong enough to deal with it. I’m going to tell my family, but I had to educate myself first.”

In addition to herself, Glenn was also positioned to educate people who should already have extensive knowledge about HIV. One day this year, the paramedics were called to her side after she almost fainted. After a quick examination, the paramedics decided to take her to the hospital. In the ambulance, Glenn told the paramedic she was HIV-positive.

“The look on his face when I said that was worth a million dollars,” Glenn said. “He did not want to touch me. I asked him for a blanket and he threw it at me. I was just like, wow, and you’re in the health field. You would think he would have that education, but I see there is still work that needs to be done.”

“For those who are honest enough to disclose their status, there’s always going to be ignorance or fear,” Davis said. “If you know your status, you have an obligation to not expose someone to the disease. HIV-positive individuals have some obligation to protect the public from a communicable disease.”

Even if an HIV-positive person wanted to disclose his or her status in order to educate the masses, unbeknownst to many, they face an ethical and sometimes legal dilemma.

A fine line is drawn between the right to privacy and the obligation to protect the well-being of society. According to the CDC, 80 percent of those infected with HIV are aware they have contracted the disease. As a result, many have altered their sexual behaviors. However, due to discrimination and lack of acceptance, this simple public good has created more problems than HIV-positive individuals may have bargained for.

According to the Center for HIV Law and Policy, “thirty-four states and U.S. territories explicitly criminalize HIV exposure through sex, shared needles or in some states, exposure to ‘bodily fluids’ that can include saliva. At least thirty-four states have singled out people who have tested positive for HIV for criminal prosecution or enhanced sentences, either under HIV-specific criminal laws or under general criminal laws governing crimes such as assault, attempted murder or reckless endangerment.”

These laws were created to protect the well-being of society, and to prevent the malicious spread of the disease. Sadly, many believe the criminal justice system is interpreting these laws unjustly.

Across the country, there are numerous cases where HIV-positive individuals were subjected to criminal liability for otherwise non-criminal conduct based on their status. In the U.S., there were at least 124 cases of prosecutions and arrests for HIV exposure between 2008 and 2011. According to the Positive Justice Project, examples of prosecutions and arrests in 2011 included, but were not limited to:

* Felonious assault–a woman was arrested for allegedly spitting on people and telling them she had HIV. Another HIV-positive individual was charged with assault for biting a police officer.

* Aggravated assault–a man was charged with failing to tell his girlfriend he was HIV-positive prior to sexual intercourse.

* Reckless endangerment–A man was arrested after spitting at police officers and saying he had AIDS.

* Criminal exposure to HIV–A man was charged with failing to disclose his status to his sexual partner.

The commonality in many of these cases is severe ignorance of the routes and risks of HIV transmission. Spitting poses no significant risk of HIV transmission, yet it has resulted in criminal convictions and severe sentences despite the absence of transmission.

“I think, unfortunately, we have created a system that encourages people to not know. We say get tested, but then the law really lets people down, if they do get tested,” said Beirne Roose-Snyder, the managing attorney for the Center for HIV Law and Policy. “Unfortunately one of the things about the law is it feeds a lot of ignorance about HIV, how transmissible it is, and how people with HIV live. There is a very strong assumption that no one would willingly have sex with someone that is HIV-positive. Everyone in public health knows that people have sex for a lot of reasons. A judge may not give (this reality) as much merit as necessary.

“This all affects who the person can tell,” said Joseph Weiner, an attorney for HALSA, HIV & AIDS Legal Services Alliance, one of the nation’s leading public-health legal services providers. “It’s just very stigmatized and looked down upon in a lot of communities. It’s a cliched answer, but education–that’s all you can do to get rid of it. I think the more people who are willing to reveal their status on their own (the more it) will combat the attitude. You’re changing complete ways of thinking and that takes time.”

But many individuals are afraid to make themselves vulnerable to these issues. HIV criminalization makes them feel as if their bodies are deadly weapons, and disclosure might not be worth the risk. However, Freddie Williams, a man who has been HIV-positive for the past 17 years, believed it was.

“When I first got diagnosed I was numb. I felt like it was a death sentence,” Williams said. “I was self-medicating by using drugs and alcohol to escape. I was using it as my coping mechanism in order to deal with having a disease with no cure.”

Soon after his diagnosis, Williams began abusing drugs and alcohol heavily. He began to live a lifestyle where the streets became his home, and stints in jail were the norm.

“Addiction is very selfish,” Williams said. “It wants everything you got and then some.”

On his third strike, Williams faced at least 25 years to life in prison for a drug possession charge. Thinking his addiction had cost him freedom, Williams was pleasantly surprised by the verdict.

“The judge sent me to a special treatment program rather than back to jail,” Williams said. “The judge knew the medical system in California was in dire need of reforming. The system is notorious for not treating people like human beings. The judge knew people were dying and he did not want to subject me to it. I think my status worked in my favor. It allowed me to get more treatment for my addiction and my condition instead of jail time.”

With a second chance at life, Williams opted to make the most of his freedom by inspiring others. He makes it a point to show other HIV-positive people that this diagnosis is far from a curse.

“I put my face on HIV,” Williams said. “I disclose my status openly to try to break down the stigma of someone being positive. I don’t care who knows. I’ve gotten past being afraid to disclose. It’s a human disease and it has nothing else to do with anything else but a human disease. I don’t allow the opinions to bother me or disrupt the things I do.”

Williams works in the community as an HIV activist. He founded the Shifting Gears Counseling and Consulting Services, an organization specializing in behavior change, problem-solving, and addiction counseling. He also co-founded the Community Health Partners, a HIV prevention nonprofit organization providing services to heterosexual African American and Latina women who date post-incarcerated and drug-abusing men. Williams said he continues his advocacy work because he is motivated by the thought of enriching the quality of life of others.

“The people who are affected with HIV need to be nurtured and empowered to step out and see what this disease is doing to their community,” Williams said. “Be more upfront about having the disease in order to kill the stigmatization. We have a responsibility to ourselves, to our community and everyone we encounter. Instead of being selfish and self-centered and thinking how I’m going to feel about it. Think about how it’s going to affect other people.”

In addition, Williams believes “HIV-positive people are truly blessed. We are actually doing God’s will by educating his people. We all want to leave a legacy, and you can. We all seek love, want love, and to be loved.”

And for those who think love and acceptance is not possible, Glenn shows them it is. She will be married next year to a man who is not HIV-positive, and she has found a home-away-from-home at the Minority Aids Project; the first community-based HIV/AIDS organization managed by people of color. The organization provides free education and HIV/AIDS-related support services.

“I’ve been working here for a year,” Glenn said. “When I first was diagnosed I thought I was the only one. When I came here, I saw everyone living their life and I realized, OK, I am HIV-positive. It’s not the end of my life. If my family were to find out, I am now at a place where I am comfortable enough to discuss it with them.”

In a place where she felt acceptance, Glenn was able to become comfortable with her status. In a community where silence is golden, researchers and HIV advocates can only hope others like Glenn will want to stand at the forefront of the HIV epidemic. They can only hope in their efforts to decrease the stigma surrounding the disease, those receptive of the message will begin to accept those who unashamedly disclose their status. And those infected, will find a good reason for why they should disclose their status in the first place.