In its now 31-year history, HIV has never faced the kind of threats to its existence as it has in 2012. From groundbreaking antiretroviral drugs to an at-home screening test, HIV prevention, treatment and eradication are within closer reach than ever before.
But one major barrier persists, experts say -- the stigma associated with the disease, stigma that has kept many from getting tested for the virus and many of those living with it from getting into life-saving care.
Sabrina Heard, a community health worker with the Women’s Collective in D.C. and an advocate for the D.C. Female Condom program, knows the stigma well, having been diagnosed with HIV when fear (and crack cocaine use) were at their height.
Here, Sabrina shares what HIV looks like, a peek into her world that she hopes will further dispel the stigma she's encountered over the years, and bring about an AIDS-free world in her lifetime.
As told to HuffPost Black Voices:
I had a daughter who was about 9 or 10, another daughter who was about 6, and then here comes a baby. I went to the hospital because I was having complications with my pregnancy. I didn’t necessarily have prenatal care and at the time they stated that I would have to have a C-section. A date was set and even though I had been to the hospital maybe four or five months before, it wasn’t until I actually came in for birth that I was informed about my HIV status.
It was 1989 so they had a big neon paper on the door warning workers to be careful about bodily fluids. I was in a remote corner of the hospital and when they had to come in and take blood, nurses would be putting on two and three pairs of rubber gloves and wearing surgical masks. When you’d push the button for the nurse to come, they weren’t all that attentive. That was the first sign in my brain that something was wrong.
I really didn’t pay it a lot of attention, because when I got the diagnosis, it had pretty much numbed me. I could say it was a delayed reaction; I was in a very thick denial. I was not quite 35; I didn’t have any knowledge; I didn’t have anything. I was smoking crack at the time, so I wasn’t feeling anything either. I was in a fantasy mentally, with no knowledge about the devastation of this disease. I wasn’t looking at the news and there weren’t a lot of people talking about it -- at least not in my circle, so I wasn’t talking about it either.
I wish at that time there had been some information brought to me about possible prevention, even something like a female condom. That way, I could have taken it upon myself to use a condom with persons who otherwise didn’t want to use one. But I didn’t have that option.
When my children were very young and I had to take them to get their shots -- they were still babies, fresh out of the womb -- the nurses in the pediatric clinic would look at me and say things like I had killed my babies. They didn’t care if I heard or not. That’s pretty much when HIV was still a death sentence. My babies weren’t sick or anything, I was just bringing them in for their routine shots, but the nurses were still looking at me as if I had done something wrong.
As a result, I stopped taking them to the doctor. It wasn’t until they had to enroll in school and a learned doctor encouraged me to have them retested that I found out that they were no longer HIV positive.
In June 2000, I walked through the door of detox here in Washington, D.C. very much in need of something. My children were taken into foster care and as a result I was at my bottom. It was a process. I had to work towards getting my children back, getting another place to stay; I had to get a job and I also had a goal of homeownership. It’s all about making goals, achieving it and making more goals, so that’s what it’s been like for me -- just getting things done.
During that time I started to obtain some self esteem. I probably was at zero before that. I started doing outreach, which comes with a lot of rejection -- people don’t want that paper you've got; they don’t want to hear what you have to say -- but it led me to not really allow another person to define me, but to define myself, for myself, and let people know who I am, HIV and all.
If I see someone who has very high risk and they’re really not listening or not acknowledging their risk, then I may bring up my experience and, at that time, disclose my status to them. To someone who is totally devastated, I’m letting them know “Girl, you don’t have to be believing that you’re going to die. Look at me.”
If I am blessed to encounter any romantic interest, that’s something that comes out with “What’s your name? What’s your number? Where do you work?” because not only do I want to disclose my status, I want to know what yours is, too.
I do an educational piece about female condoms ... letting them know that everything still works, I still want to have sex, and to make me comfortable and confident, here I am using this female condom to protect myself and my partner. I am very much afraid of being reinfected with another strain of HIV, but I’m still very much alive and wanting to be sexually active, and I don’t want HIV to stop me from being comfortable with it.
I can’t see how being HIV positive has denied me from achieving the things that I've wanted to do. I can say some other things might have slowed me down, but actually stopping me from acheiving things that I want ain’t got nothing to do with being HIV positive.
In fact, it has been an awakening for me, as far as my health is concerned. It has brought my medical awareness up; I might not have paid that much attention to my health otherwise. There’s no telling what I might have by now if I wasn’t HIV positive.
Education is the key. I’m not saying stigma is ever going to go away, because it has existed in different areas throughout history. But it’s going to take normal, everyday people who have been there and back to let it be known that yes, this thing is devastating, but it’s not anything to be ashamed of. If you don’t want to walk this walk that I have, then you need to talk, ask what your HIV status is, get tested and let it be something that’s normalized.
Are you living (and thriving) with HIV? Show us what HIV looks like. Email your story to email@example.com and help put an end to the stigma associated with the disease.
Related on HuffPost:
1. Most Don't Have Their Infection Under Control
Only one quarter of the 1.1 million <a href="http://www.cdc.gov/nchhstp/newsroom/docs/2012/Stages-of-CareFactSheet-508.pdf">people with HIV</a> have their <a href="http://www.huffingtonpost.com/2012/07/27/hiv-under-control-1-in-4_n_1711260.html">condition under control</a>, where "under control" means the virus has been suppressed, according to a report released this summer by the Centers for Disease Control and Prevention. "Only if we get <a href="http://www.philly.com/philly/health/HealthDay667108_20120727_Only_1_in_4_Americans_With_HIV_Has_Virus_Under_Control__CDC.html">everyone under regular care</a> for HIV/AIDS can we recognize the full benefits of treatment and prevention," Irene Hall, an epidemiologist at the CDC and one of the authors of the report, told HealthDay. <em><strong>CORRECTION</strong>: The first sentence has been reworded to more accurately reflect the number of people with HIV.</em>
2. Bone Marrow Transplants Could Play A Part In Being HIV-Free
Two men with HIV and cancer no longer have <a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html">detectable blood levels of the virus</a> after receiving bone marrow transplants for their cancers, news outlets reported this year. Doctors were unable to <a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html">find any traces of HIV</a> in the men's cells after they received the bone marrow transplants while also being treated with antiretrovirals. The finding "suggests that under the <a href="http://abcnews.go.com/blogs/health/2012/07/26/two-more-patients-hiv-free-after-bone-marrow-transplants/">cover of anti-retroviral therapy</a>, the cells that repopulated the patient's immune system appear to be protected from becoming re-infected with HIV," Dr. Timothy Henrich, of Brigham and Women's Hospital, told ABC News. However, the Boston Globe pointed out that it's still too soon to say that these men have been<a href="http://www.huffingtonpost.com/2012/07/26/hiv-free-men-bone-marrow-transplants_n_1707505.html"> full-on <em>cured</em></a> of HIV, since they are still on the anti-retrovirals. There's no firm word on whether they will go off of the medication.
3. No-Cost HIV Treatment Could Cut New Infection Rates
New <a href="http://www.huffingtonpost.ca/2012/11/27/free-hiv-drugs-decrease-infection-bc_n_2200393.html">HIV infection rates</a> can be dramatically lowered by making antiretroviral drugs free, a study from Canadian researchers found. The Canadian Press reported on the study, conducted by B.C. Centre for Excellence in HIV-AIDS researchers, which showed that British Columbia -- a province that offers <a href="http://www.huffingtonpost.ca/2012/11/27/free-hiv-drugs-decrease-infection-bc_n_2200393.html">free access to antiretroviral therapy</a> -- had the lowest rate of new HIV infections over a more-than-10-year period, compared with Ontairio and Quebec.
4. Many Young People Don't Know Their HIV Status
More than half of HIV-infected young people are <a href="http://www.huffingtonpost.com/2012/11/27/hiv-youths-infected-aids-young-people_n_2198629.html">unaware that they have the virus</a>, according to a Centers for Disease Control and Prevention report. "Given everything we know about HIV and how to prevent it in 30 years of fighting the disease, it's just unacceptable that young people are <a href="http://www.huffingtonpost.com/2012/11/27/hiv-youths-infected-aids-young-people_n_2198629.html">becoming infected at such high rates</a>," Reuters reported CDC Director Dr. Thomas Frieden saying. The report also showed that for young people, 72 percent of the new HIV infections were in men who have sex with men, while almost 50 percent were in young, African-American males, Reuters reported. These figures are based on 2010 data.
5. More People Are Living With HIV Than 10 Years Ago
The number of people <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">living with HIV</a> has increased by 18 percent from 2001 to 2011, according to a report released this year from the United Nations Programme on AIDS. An estimated 34.2 million people around the world are living with HIV. The report also showed that <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">deaths from AIDS </a>have <em>dropped</em>, from 2.3 million in 2005-2006 to 1.7 million in 2011, Reuters reported.
6. The Cost Of HIV Drugs Is Decreasing
According to the same United Nations report, costs for the cheapest UN-recommended <a href="http://www.huffingtonpost.com/2012/07/18/hiv-aids-numbers-statistics-worldwide_n_1682936.html">antiretroviral therapy drugs</a> have also decreased over the past 10 years, Reuters reported. A year's worth of the drugs used to cost $10,000 in 2000 for one person; now, it costs $100 a year.
7. HIV Treatment Truvada Can Also Be Used As A Preventive Measure
The Food and Drug Administration this year officially approved the <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">drug Truvada</a> -- which has been used since 2004 as a treatment for HIV -- to be sold as a preventive measure for people who don't have the infection, but are at high risk for it. The FDA said that the pill should be considered for <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">preventive use</a> not only by gay or bisexual men who are at high risk for HIV, but also heterosexual men and women who may also face HIV risks, the Associated Press reported. <a href="http://www.huffingtonpost.com/2012/08/09/truvada-heterosexuals-aids-hiv-prevention-pill_n_1760542.html">Heterosexual men and women</a> make up more than one-fourth of new cases of HIV, and "that's not a portion of the epidemic we want to ignore," the CDC's Dr. Dawn Smith, who was the lead author of the new recommendations, told the Associated Press. The FDA also approved a new drug this year, <a href="http://www.huffingtonpost.com/2012/08/27/stribild-hiv-treatment-fda_n_1834734.html">Stribild</a>, to treat HIV, Reuters reported.
8. Engineered Stem Cells Could Play A Part In Fighting HIV
In findings published this year in the journal <em>PLoS Pathogens</em>, scientists from the University of California, Los Angeles found that it's possible to <a href="http://www.huffingtonpost.com/2012/04/16/stem-cell-aids-hiv-study-ucla_n_1428660.html">genetically engineer stem cells</a> to attack living HIV-infected cells in mice. While the study was only for "proof-of-principle," it "lays the groundwork for the potential use of this type of an approach in combating HIV infection in infected individuals, in hopes of eradicating the virus from the body," study researcher Dr. Scott G. Kitchen, an assistant professor of medicine at UCLA, said in a statement.
9. Pretty Much Everyone Should Be Screened For HIV
People should be screened for HIV even if they're not at high risk of contracting the infection, according to draft recommendations released just last month by the U.S. Preventive Services Task Force. The recommendations would mean that everyone between the ages of 15 and 65 should be <a href="http://www.huffingtonpost.com/2012/11/19/routine-hiv-screening-us-preventive-services-task-force-uspstf_n_2161090.html">screened for HIV</a>, even if they're not at high risk for it, Reuters reported. "The prior recommendations were for screening high-risk adults and adolescents," Dr. Douglas Owens, a member of the USPSTF task force and a Stanford University medical professor, told Reuters. "The current recommendation is for <a href="http://www.huffingtonpost.com/2012/11/19/routine-hiv-screening-us-preventive-services-task-force-uspstf_n_2161090.html">screening everyone</a>, regardless of their risk."
10. People Should Be Treated With Antiretrovirals As Soon As They're Diagnosed WIth HIV
<em>All</em> HIV patients should be <a href="http://healthland.time.com/2012/07/23/new-advice-calls-for-putting-all-hiv-patients-on-drug-treatment/">treated immediately with antiretrovirals</a>, according to new guidelines issued this year from a panel of the International Antiviral Society-USA, as reported by <em>TIME</em>. The recommendations are counter to previous guidelines, which said that antiretrovirals should only be used if the CD4 count -- a measure of immune cells in a person's body -- becomes less than 350 cells for every mm3 of blood.
Growing Up with HIV
During the AIDS 2012 conference, Christina Rodriguez talks about growing up with HIV.