As the name suggests, this day was created to focus on the specific epidemic of HIV & AIDS in black communities. And like everything that racism and bigotry touches, the AIDS crisis has been no different. We are not going to go into the full history behind AIDS as we will discuss that in June when we finally cover the AIDS epidemic. However, in this episode we will discuss the many biases and overt as well as subtle racism that prevented early treatment in black and brown communities. We will also give a fairly thorough explanation of HIV and AIDS and address some of the stigma around the virus.
Blacks Educating Blacks about Sexual Health Issues
Early in the AIDS epidemic studies showed the need for treatment and education in black communities. Yet the government wouldn’t even publicly acknowledge AIDS until the mid 1980’s, let alone offer help and funding to poor black communities. So African Americans shouldered the burden themselves. The first AIDS organization founded for and by black people was established in 1986 as Blacks Educating Blacks about Sexual Health Issues.
This group was formed in Philadelphia and was a hands on street approach to offering information and protection. Across the country in California the “Black and White Men Together” coalition formed in San Francisco. It was lead by black organizer Reggie Williams who created a task force to address local AIDS concerns. Not too far away, Unity Fellowship Church created the Minority AIDS Project (MAP) in Los Angeles.
A government grant was secured in 1987 by the National Coalition of Black Lesbians and Gays. They hosted the first National Conference for AIDS in the Black Community and saw an attendance of over 400 medical professionals and educators across the country. Leaders of the conference also manage a 2 hour session with the attorney general to discuss the specific needs in communities of color. Later that year in October, the American Public Health Association hosted its first panel discussion on AIDS. However, the black community was shut out showing a deliberate ignorance to the crisis happening among people of color. Storming the stage in frustration black activist and proud gay man Craig Harris grabbed microphone and declared “I will be heard!”. He then addressed the crowd about the specific issues surrounding the AIDS epidemic and African Americans.
The War on Drugs
As the HIV and AIDS crisis continued to build in America, another plague was running parallel to this issue, and that was the racist and classist War on Drugs. While the two would seem disconnected, in reality they were woven together especially when they overlapped concerning communities of color.
The most common way HIV is spread is through unprotected sex, the second most common way is through shared needles. Mix those two together with people high, having unprotected sex, and sharing needles, and we can imagine the results. Then place stigma, racism, and prejudice into the situation and now the individual can’t get treatment or is never even offered the opportunity.
Studies have long showed that drugs are used at comparable rates across races. In fact when it comes to heroin, white men use at a 40% higher rate than black men. Yet the War on Drugs directly targeted black and brown communities. We know this for a fact by the vast increase in prison populations that disproportionately house people of color. In 2017, Pew Research reported that Black and Latino people comprised only 28% of the adult population in America. Yet adult prisons were made up of 56% Black and Latino inmates; meaning, that nearly 2/3rds of our prison population is people of color when the majority of Americans are white. And what does this have to do with the AIDS crisis?
It has a hell of a lot to do with the HIV/AIDS epidemic. To say that racism isn’t central to the staggering numbers around HIV in black communities is to say that the ocean isn’t wet. One is directly responsible for the other. The War on Drugs did not eliminate drugs, instead it forced drugs to go underground and allowed authorities to openly discriminate while claiming innocence from racism. There was also an often ignored form of racism called cognitive bias.
Michelle Alexander discusses this concept in her highly acclaimed work, The New Jim Crow. This is a bias within a group which people may not want to have, yet this prejudice has been conditioned within them. People will often remember past events in a racist manner. For instance, in some studies an individual will be shown a quick clip of a thief robbing a store. When asked to remember the thief, participants often remembered a black man. Even if the thief was white or the race of the person was hidden.
And as we should know, racism -whether overt, subtle, or cognitive- matters because prejudice against black and brown communities reduces funding, education, programming, medical treatment and more. In 1988 a law banned funding for needle exchange programs. Of course people in more privileged areas could afford to buy new needles or to get a prescription from their doctor. But in poorer communities, a needle exchange was often the only way to access sterile needles. Because this funding was not only cut but forbidden, addicts lined up in the so-called ‘shooting galleries’ to share needles. Spreading the virus as they went.
And because of 250+ years of slavery, and another 100 years of Jim Crow, many black communities had been deliberately pushed into poverty. Federal regulations and restrictions had formerly made it impossible for most black and brown people to escape out of these conditions. With the Civil Rights Act of 1964 less that 20 years had passed when the AIDS outbreak began. Therefore, the racism and prejudice had hardly thawed, let alone allowed for enough funding and education to take place among marginalized communities to stem the spread of the epidemic. As a whole, almost no American’s had any knowledge of HIV and AIDS. White Americans were simply more privileged and therefore not as often exposed to the virus.
A disease for the dirty
So HIV was pitched by leaders as a ‘gay cancer’ or a disease that only the filthy and the dirty contracted. The stigma and myths around who could and couldn’t get the disease grew over time. In October of ‘86 the CDC released a report that showed that 25% of cases for adults with HIV were black, 14% were Latino, and 58% of children diagnosed with the virus were black or brown The statistics were presented as further prejudice against minority groups. In reality, simply offering education on safe sex and free needle exchange programs would have greatly reduced the spread of the disesase. But because it was still viewed as a gay disease or simply not a threat to white hetero Americans, AIDS became the burden for marginalized communities to bear on their own.
Throughout the 90’s, LGBTQ organizations partnered with many African and Latino American groups to spread awareness on HIV prevention. The diagnosis of HIV and the public announcement by world star Magic Johnson in 1991 pulled communities other than the LGBTQ into the spotlight. Studies found in 1993 that AIDS was the leading cause of death among young black men. Then, a decade after the ban on needle exchanges began, Clinton refused to rescind the order. This move proved crucially devastating to black communities. In 2003 half of black women with HIV had received it through drug use or by having sex with someone who used drugs. Andy by 2004 AIDS had become the leading cause of death among young black women and the second leading cause of death among middle aged black women.
The Black Aids Institute
The year 1999 BAI (The Black Aids Institute) was founded and became the first organization focused exclusively on reducing HIV/AIDS among black people. It was this same year that the National Black HIV/AIDS Awareness Day was founded. Yet even with the amazing progress we have had in combating the AIDS epidemic, Black communities are still greatly suffering.
Between 2010 and 2016 there was a significant decrease in HIV diagnosis among most sections of the black community. However, there had been a 40% increase among black gay and bisexual men between the ages of 25-24. And as of a 2017 report, African Americans account for 43% of all new HIV diagnoses despite making up only 13% of the population. Which can only mean that our federal and state institutes and organizations are continuing to devastatingly fail black communities.
Simple programs could be set in place to educate in marginalized groups. Free needle exchanges, better sex ed in schools, free condom and lube distribution, free HIV testing on a monthly basis, and access to the Prep and Pep medications would all benefit any community but especially those less priviledged. However, the first step is ending the stigma and understanding HIV and AIDS. So allow us to give you a 101 on the topic. First, what is the difference between HIV and AIDS?
Human Immunodeficiency Virus
HIV stands for Human Immunodeficiency Virus and it enters the body through the bloodstream or mucous membranes. Once inside, the virus attaches itself to the CD4 cells in our immune system. These are our defense cells, HIV infects and turns them into disease carriers rather than immune defense. This slowly drains the bodies ability to fight off other outside infection. If not treated, in time the body becomes too weak and will succumb to illnesses and disease. Treatment today can keep HIV at bay for decades and most HIV individuals live a relatively normal life. However the disease is not currently curable and eventually will progress.
The progression of the HIV virus varies from person to person and also factors in an individual’s treatment and health prior to and after infection. Upon initial contact the individual who is infected will experience flu-like symptoms. A rash, fever, headache, muscle cramps, sore throat, and swollen lymph nodes are the most common reactions. Sometimes they are severe enough that the person will go to the doctor, other times the symptoms are mild and cause little concern. And of course, we must address the fact that many people cannot afford the copays or have no insurance and therefore will avoid the doctor.
The next stage is Asymptomatic. During this time the infected individual could go 10 – 15 years without ever showing signs of the disease. If they did not go to the doctor upon their initial infection and if they have not had an HIV test since, they could have no clue that they are carrying the disease. This points to the importance of protection and regular checkups which we will address in a few moments. However, if a person is checked and catches the disease at this stage then their chances of surviving dramatically increase. As we said, eventually the disease will play a part in the individuals death. But as we can see from survivors such as Magic Johnson who has been diagnosed for nearly 30 years, individuals could live most of their lives in a fairly normal routine. Unfortunately, the average cost of lifetime medication for an individual is just under $380,000.
The third stage of HIV is Symptomatic. This is the point in which the disease typically begins to progress more rapidly though it can still be slowed down. In this stage the individual begins to feel the effects of the disease. The former flu-like symptoms return along with diarrhea, weight loss, yeast infections, and shingles. CD4 cells are rapidly dying off and typically reach below 350 at this point – the average person has 500-1500 CD4 cells. Treatment is increased and thus becomes even more costly. However, it is essential to trying to fight the disease. Once HIV progresses to AIDS there is typically little time left. Which brings us to the final stage, Acquired Immune Deficiency Syndrome.
Acquired Immune Deficiency Syndrome
Once a person is diagnosed with AIDS they usually have 6 months to 3 years to live. At this point treatment can still continue but is simply staving off the inevitable. There are many AIDS centers around the world and across the country which house people terminally diagnosed. These homes simply make the individual as comfortable as possible, providing treatment, pain relievers, entertainment, and comfort in their final days’. Last year 770,000 people around the world died of the dreaded disease. As devastating as this is, we have seen continued progress in viral suppression in the last 30 years. Viral suppression is the term used for limiting the spread of HIV/AIDS through treatment and early testing.
Getting to the root of the problem
But the epidemic persists. Men who have sex with men are 22 times more likely to aquire HIV, the same statistic goes for people who inject drugs. Sex workers are 21 more times at risk and transgender people are 12 times at risk of HIV infection. As we’ve discussed countless times on this podcast, all of these statistics are central to the queer community. LGBTQ people suffer higher risks of substance abuse problems due to social and cultural rejection. The inability to obtain fair and equal employment often drives queer people to sex work. Especially transgender women who feel they have no other option. We do not disparage sex work, it is an honest way for an individual to make a living if they so choose. But it can be dangerous and many people do not feel they actually have a choice in the matter.
And of course, the intersectional identities of black and brown queer people stacks the odds even higher against them. They government turns its back on marginalized people, allows them to wallow in poverty and oppression, and then has the audacity to be alarmed when these communities suffer. But if our so-called leaders won’t help us then we must continue to help ourselves. And how do we do this? We must end the stigma and the irrational fear and myths around HIV/AIDS. As we stated, HIV is transferred through the bloodstream or mucous membranes. Which means you can’t get the virus from touching an HIV positive person or their belongings.
You also can’t get the virus from saliva unless that saliva has blood in it. So don’t make out with someone with bleeding gums. In fact, in the 74 million plus cases of HIV reported since the epidemic began, only one woman ever reported getting HIV from kissing her partners. Coincidentally, she also admitted to having unprotected sex with her HIV positive partner and having sex after a condom broke. It is virtually impossible to acquire the virus through non sexual intimacy. And many couples where one partner is HIV positive continue to have normal, healthy, PROTECTED, sex lives.
And that’s our second point – and hopefully the heteros and the people in opposite sex relationships are paying attention – USE PROTECTION! It’s not all about pregnancy. STD’s and STI’s are just as much a factor when it comes to safe sex. Please bring condoms with you wherever you go and make sure you use silicone lube to reduce friction and to make sure the protection on the condom is worn off by oil or water based lubricant. Another protection is the PreP pill. This pill must be taken every day but by doing so a person decreases their risk by 90%. Again, this is especially ideal for couples where one partner is infected and the other is not. Most medical insurances cover PreP and the manufacturer Gilead offers an assistance program and even free medication in some situations. We’ve included a link in our online script if you would like to apply.
Also, if you’re sexually active then it is advisable to be tested every 3-6 months. Many large cities host free HIV testing a couple of times a year at various facilities. And some LGBTQ organizations now have free testing year round. In addition, most pharmacies such as Walgreens and CVS now see over the counter HIV testing pods. These are gum swabs that give you a result within 20 minutes. However, if you are certain you’ve been exposed to the disease in any way then please still get a blood test from your doctor. Typically, the virus will not show up for a few weeks or months. Which is why you should follow up your initial exam every 3 months for a year after being exposed to HIV.
An individual who has been positively exposed to HIV can also use the antiretroviral medicines PeP. These are a combination of meds that reduce the chance of the infection taking hold and must be started within 72 hours of exposure (the sooner the better, every hour counts).
As we’ve stated, sex isn’t the only way that HIV is transmitted though it is the most common. Needle sharing is the second biggest cause of the spread of the virus. 33 states have implemented needle exchange programs. Simply by allowing people access to sterile needles will aid in decreasing the epidemic. It is important we continue to lobby for federal funding and nationwide acceptance of these programs. It is also important to continue to oppose the racist War on Drugs. Until these issues are repealed or put to rest, state and local funding and awareness is essential. We included more information about this in our link to the American Addiction Centers on our published script.
A final important factor in the spread of HIV is through pregnancy and breast-feeding. A mother who is HIV positive should talk to her doctor and should avoid breast-feeding. Treatment during pregnancy can greatly reduce the risk of infecting her baby and doctors can begin to test for signs early on. By educating people on the importance of safe sex and their resouces to prevent HIV, by implementing needle exchange programs, and by informing mothers of the risk of the spread of HIV through breast-feeding, we can greatly stem the epidemic of AIDS and HIV. And we can especially help marginalized communities which have had most of these resources kept from them.
Finally, by standing up to misinformation and fear we can end the stigma around HIV. We can take inspiration from a prominent figure in the fight, Magic Johnson himself. Who stated upon announcing his diagnosis.
“I will now become a spokesman for the HIV virus because I want people, young people, to realize they can practice safe sex… sometimes you’re a little naive about it, and you think it could never happen to you. You only thought it could happen to….. other people….[But] it has happened.”
Johnson, like so many others, could have walked away and silently treated his disease. But instead he decided to face the backlash and cruelty and end the stigma. We are responsible for helping our siblings in need. Whether we are directly affected by the disease or not. By lifting each other up and we can end this epidemic. Your recommended resources are the Black Aids Institute and aidsvu.org which provides a map of where you can get tested.
- Frontline (Black AIDS Timeline) – https://www.pbs.org/wgbh/frontline/article/timeline-30-years-of-aids-in-black-america/
- Black Aids Institute – https://blackaids.org/cut-the-stigma/
- National BHAAD – https://www.hiv.gov/events/awareness-days/black/
- Target HIV – https://targethiv.org/blog/NBHAAD/
- Pew – https://www.pewresearch.org/fact-tank/2019/04/30/shrinking-gap-between-number-of-blacks-and-whites-in-prison/
- Mayo – https://www.mayoclinic.org/diseases-conditions/hiv-aids/symptoms-causes/syc-20373524/
- Tools – https://www.cdc.gov/hiv/default.html
- Fast Facts Video – https://www.avert.org/about-hiv-aids/what-hiv-aids/
- Testing – https://www.ucsfhealth.org/conditions/hiv/diagnosis/
- Myths and Facts – https://www.thebody.com/health/hiv-transmission-risk/
- Transmission (Video) – https://www.avert.org/hiv-transmission-prevention/how-you-get-hiv/
- Kissing – https://www.verywellhealth.com/can-i-get-hiv-from-kissing-49558/
- Prognosis – http://www.aidsmap.com/about-hiv/life-expectancy-people-living-hiv/
- More Facts – https://www.unaids.org/en/resources/fact-sheet/
- Gilead – https://www.gileadadvancingaccess.com/
- American Addictions – https://americanaddictioncenters.org/harm-reduction/needle-exchange/