Removing the Stigma

early 35 years ago, the human immunodeficiency virus (HIV) shook the world and dominated news headlines around the globe. In those years, a person diagnosed with the virus was expected to live less than 18 months. Now, the lifespan-if treated-is roughly the same as those without HIV. But the stigma attached to the disease persists. Many in the medical community and HIV advocate groups say that’s the biggest stumbling block to stopping the spread of the disease-particularly in the Black community where the rate of HIV is the highest and the shame can run the deepest. 

Sobering Stats

The Center for Disease Control and Prevention (CDC) has reported that approximately 658,507 people in the United States have lost their lives to AIDS and about 50,000 become infected with HIV each year. The CDC estimates that “more than 1.2 million people in the United States are living with HIV infection, and almost 1 in 8 (12.8 percent) are unaware of their infection.” 

Since America’s first HIV infection diagnoses in the early 1980s, significant progress has been made in better understanding the virus and reducing the number of new infections.  But although HIV infections have decreased among Black women, Black injection drug users, and Black babies, Black gay men are the only group in the Black community in which infection rates continue to rise. According to a 2015 report from the Foundation for AIDS Research, Black gay men in the U.S. have been disproportionately impacted by HIV infection compared to all other Blacks subsets.

The Foundation for AIDS Research findings show that of the 39 million Black Americans living in the U.S. there a total of 20,920 new HIV infections each year in the Black population, of which 6,100 are Black women, 3,800 Black heterosexual men and 11,020 Black gay men.

In Michigan, Black people account for 58 percent of those living with HIV according to the Michigan Department of Health and Human Services’ July 2015 Annual HIV Surveillance Analysis. In Detroit, Black people account for 79 percent of those living with HIV, according to


HIV infection numbers are higher among Blacks than any other racial/ethnic group, according to CDC findings. In fact, the rate of Black men living with HIV is nearly 9 times that of White men in Michigan, and the rate of Black females living with HIV is 21 times that of White females.  

1 in 2 Black gay men will be living with HIV in their lifetime, if things don't change.

Changing Perceptions

There is also a misconception that Black people have a higher prevalence of HIV because they engage in riskier behaviors. But, studies reveal that Black Americans do not necessarily engage in more high-risk behaviors than any other racial group.

So why does HIV disproportionately affect Blacks, especially Black gay men?

Institutionalized racism, socioeconomics, homophobia in the Black church, and hyper-masculinity in Black communities-to name a few-are generally pointed as reasons why HIV disproportionately affects Black people. That’s why AIDS service organizations and other like-minded advocates are confronting a rising challenge: Getting people to get past the stigma of living with the virus in the first place.

Sidney Skipper, program advocacy coordinator for the Detroit-based People Living With HIV, says stigma is the biggest reason and the root cause of why Black gay men HIV infections are steadily increasing. It’s the stigmas of HIV that kill, not necessarily the virus, only if left untreated. 

“Stigma is that degrading attitude that a society has towards a person or group of people because of their age, race, religion, weight, education, but in this case because of a disease,” says Skipper, who has been living with HIV for 25 years. “Most people believe HIV is a mark of disgrace, infamy or a stain on a person’s reputation. And stigma has caused some significant barriers to HIV prevention, treatment and care.” 

“Stigma is that degrading attitude that a society has towards a person or group of people because of their age, race, religion, weight, education, but in this case because of a disease.”

Progress and Prevention

Skipper is one of five HIV-positive leaders who conducted interviews for PLWH’s Stigma Index, a research endeavor that collected data on 70 people living with HIV in Detroit and surveyed them about their experiences with HIV-related stigmas and discrimination over four months.  The survey, Skipper says, asked questions like, “In the past twelve months, have you been rejected because of your HIV status from a lover, parents, friends, or pastor?”

“The Stigma Index has been implemented in over 45 different countries,” says Skipper.  “And Detroit was the pilot city for this stigma index in the U.S., thanks to Dr. Laurel Sprague who is a member of the Global Network of People Living With HIV and is a Michigan resident.”    

Advances in modern medicine have made living with HIV easier and manageable.  Improvements with HIV treatment can be attributed to antiretroviral therapy, which prevents the virus from multiplying and reducing the amount of the virus in the body.  Living with HIV is no longer the death sentence it once was.

“We’ve got Pre-exposure prophylaxis (PrEP), that’s one pill a day.  If you feel like you’ve been exposed to HIV, that will protect you from catching the virus,” Skipper says.

But despite all the progress with modern medicine, people aren’t still taking advantage of it because of the long-held prejudices against revealing a positive HIV status, or simply having frank discussion about the virus.  “We have treatment as prevention. The fact that I am on these drugs, there is over a 90 percent chance that I won’t pass the virus on to a serodiscordant partner. We hope to get people living with HIV, as well as members of the community-faith-based and community at-large-to help spread this information, so that we can educate people about the new realities of HIV.”

Skipper adds, “In all of the social determinants of health surrounding HIV and HIV infection, PLWH chose five advocacy priorities to focus on.”  Those five priorities are: internalized stigma, HIV-related stigma and discrimination in the faith-based community, HIV criminalization, youth education and advocacy, and the transgendered community.

Stopping the Shame

Internalized stigma, Skipper says, is “that degrading attitude or belief system that both the stigmatizer and the person being stigmatized shares.” 

The Stigma Index reports that 56 percent of its HIV-positive respondents to its questionnaire felt worthless and had low self-esteem; 60 percent of its respondents agreed that they were ashamed of their HIV status; 8 percent felt that they should be punished because of their HIV status; and 17 percent had either thought of or attempted suicide. 

“Now, why is this important?” Skipper asks. “It (stigma) leads to depression, anxiety and loss of work. And we’re talking about people who are productive, who can live a long productive life. HIV/AIDS is not a death sentence any more; it’s a chronic manageable disease.”

The PLWH’s second priority is confronting HIV-related stigma and discrimination in the faith-based community.  “What I’m finding from our questionnaire is not that the faith-based community isn’t aware of HIV and that they’re not willing to discuss it with their parishioners, but that the parishioners have perceived stigma,” Skipper says.  “That’s where you believe you’re going to be stigmatized against because of your HIV status. A lot of them are afraid to go to pastors and leaders to talk about it, because they think they are going to judge them.”

For years, Black clergy and their parishioners have had a central role in civic affairs in the city of Detroit.  A number of public opinion surveys reveal that religious organizations are places where political education occurs.  This church-based political activism grew out of a historical struggle for racial justice that placed some clergy and their congregations in the middle of the fight. So, coagulate the Black church’s view on sexuality and homosexuality with the rising HIV infection rate among Black gay men, and this dichotomy of ideologies creates the highly charged stigmas people have in the Black community, perpetuating increasing HIV infection rates.

Stigma also fuels HIV criminalization, Skipper says.  He says 88 percent of the Stigma Indexes respondents didn’t trust the Michigan courts to give them a fair trial if they were accused of not disclosing their HIV status; 62 percent of respondents felt it was reasonable for someone to avoid getting an HIV test.  

“If you don’t know you’re HIV positive, you can’t tell anyone, and they can’t prosecute you if you don’t know,” Skipper says is the mentality of some.  “But if you know, they can prosecute you and 46 percent of our respondents, in fear of prosecution, felt it very reasonable for a person living with HIV not to disclose it to their partner.” 

Stopping the Spread

Youth ages 13-24 are getting HIV faster than the general population and Black youth at even higher rates,” Skipper says. “In Detroit, it’s frightening. The CDC has said that even though Black men having sex with men are not a large portion of the population, but, one in two of Black gay men will be living with HIV in their lifetime, if things don’t change.”

Male-to-female transgender individuals, in particular, are at very high risk for HIV infection, according to the Foundation for AIDS Research. “Transgendered issues are more blatant,” Skipper says, “because they have so many levels of stigma and belong to so many marginalized groups that their stigma is compounded.”

So how do we eradicate the spread of HIV and reduce the number of new infections to zero?

In 2010, President Obama signed the first National AIDS/HIV strategy to reduce HIV incidence, increase access to care and optimizing health outcomes, and reduce HIV-related health disparities.  The vision of the strategy is to “provide a roadmap for policymakers and the general public,” as well as to, “clearly describe the areas that require the most immediate change.

Here in Detroit, the city’s health department says HIV remains in focus. “We really remain committed to continuing the fight of the epidemic,” say Dr. Abdul El-Sayed, executive director and health officer.  “We are thinking very critically about who we can partner with, in terms of the African-American community, and also the LGBTQ community who bears a larger proportion of the burden to create partnerships, increase awareness and bring people into care, all working together to decrease the burden of HIV in our community.”

Know Your Status

The first step for the department is getting people to know their status.

“People need to know their status, so they can get into care. And the goal of the national strategy is to help people learn their status to get into care quickly, if possible, and then get to viral suppression,” says Patrick Yankee, director of the HIV/AIDS Program, City of Detroit Department of Health and Wellness Promotion.  “Viral suppression is the goal of HIV treatment. Now, 30 years ago, we never discussed (viral suppression) because all we did was help people die.  It was very quick and there were no medicines, but now we’re so lucky today that if a person is detected with HIV, they can expect to live a normal lifespan with current medications.”

Yankee says DHWP’s key initiative is linkage to care. He says that’s the area the department has seen the most progress in the past year. “If you were diagnosed today, one of those linkage workers would meet with you today, or at least call you and have a conversation on what they will do,” Yankee says. “About half of them are living with HIV, so they’ve already been through it.” He says they help you understand what the next steps can be and to get you the insurance you qualify for. If you can’t qualify for insurance they will assist you in paying for your medication and the medical care you need.

Yankee says: “We have a lot more awareness and we still are always working to get new information out to the most impacted community, which are young, Black gay men in the city of Detroit.” 


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