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Blacks and HIV

There are more than 1.7 million people living with HIV here in the United States. About 18% are unaware of they’re even infected.

Living with HIV and taking HIV medication
Living with HIV and taking HIV medication Louis "Kengi" Carr Photography
Self portrait
Self portrait Louis "Kengi" Carr Photography

Los Angeles County is roughly about 4,084 square miles, 88 incorporated cities and over 10 million residents making it one of the largest counties in the country with populations larger than 43 of the 50 States. In fact, Los Angeles is 88 times larger than its sister city San Francisco. It is also larger than Washington DC, Houston, New York City, San Francisco and Philadelphia combined. It is the most ethnically diverse geographical region in the country and is home to some of the nation’s largest and most respected private and public colleges, universities and hospitals. Moreover there are plenty of HIV and AIDS clinics, AIDS service organizations (ASO’s) as well as research facilities.

Nearly 200,000 Californians have contracted HIV and nearly 90,000 have died since the epidemic began in the early 1980s. California ranks second in the nation in cumulative AIDS cases at 157,719, surpassed only by New York. Approximately 109,000 Californians are HIV-positive, among whom 69,728 are living with AIDS. (Source: California Office of AIDS, AIDS Surveillance Report as of June 2010)

Los Angeles is home to an estimated 63,000 people living with HIV. Of that number about 14,000 are unaware of their infection and about 25,000 are living with AIDS. Since the AIDS epidemic began in 1981, 1.7 million Americans have been infected with HIV and 641,976 have died of AIDS-related causes. More than 60% of Californians living with HIV reside in Los Angeles County or the San Francisco Bay Area. (Source: California Office of AIDS, AIDS Surveillance Report as of June 2010)
It is estimated that 94% of people living with AIDS and 71% of those living with HIV who are eligible for treatment were receiving it. However females, transfemale , Blacks, Native Americans, injection drug users, and heterosexuals were less likely to be receiving treatment at all.

According to the Centers for Disease Control (CDC) the main reason for the huge disproportions is lack of education, stigma and shame, but many of the people I spoke to for this story tell a very different story.

“The first case of AIDS was in 1980, but here we are some 34 years later with outstanding advances in caring for people with HIV or AIDS, but the infections and deaths among Blacks have gone unchecked and all they can say is lack of education, stigma and point the finger at our families and churches. Let’s just keep this one hundred ok? They’ve done very little and I want to stress very little to locate education and access to care in our neighborhoods.” says 27 year old Debra, a student studying environmental health. “I mean come on now, they can pinpoint down to the zip code the so called hot zones in our neighborhoods, but when you ask what they've done to change it they never have an answer.”

“I lost my brother around 1991 and we tried as hard as we could to get help, but we were on our own” Sharon Moore explained “My mom called all over begging for help, we received nothing. My parents took out two mortgages to care for him and lost their home soon after he died. They did the best they could for my brother with no help. To this day there is no education or outreach where I live.”

“I've been living with AIDS for about 10 years now and the biggest problems I've encountered have come from the people who are supposed to helping me.” Kevin tells me “Doctors act like you bothering them and you bet not question them or raise concerns because you will be treated like you just tried to infect them. I hear people say it aint like it used to be or shit like people no longer die, but I know 6 people who have died in the past year. Guess the folks saying that shit aint in contact with Black folks”

I could say that speaking with and hearing the stories from over 60 people currently living with HIV and AIDS surprised me, but that would not be true because I've been living with HIV over 6 years now and my journey has not been easy. But I wanted to hear more from people living with HIV or AIDS. I wanted to hear their stories in their own words from their own mouths, not some scripted speech designed by some agency.

Brian has been living with AIDS for about 5 years, although he knew of his HIV diagnosis for well over 15 years, but fell out of care because he was confused about how care worked and went several times without access to his medications. “First off they made me feel awful, but I was told I needed to deal with it. I even had one nurse tell me that it was my own fault I had HIV and I should not complain about it.” Many of the people I spoke with also said the level of respect and compassion for them is greatly lacking. “The last straw for me was when I went three months with any medication and no one could seem to correct it. There are times when I wish I would just die already.”

I even spoke to a homeless woman living with AIDS who said “They don’t give a damn about me. They treat me like scum when I go in, so half the time I don’t bother to go. Why go to a place for help and walk out feeling so much worse.” Fighting back tears she told me. “I know I smell bad and I know I’m dirty most of the damn time, but I live on the streets with no place to shower and no clean clothes. I don’t need to go to some clinic to be abused by someone who don’t care about me.”

When I asked about outreach, education, even access to testing and care the answers I heard were pretty much for the same “not only is all of that nonexistent where I live, but more importantly they don’t know how to engage us” says Pat who lost her mother to AIDS last year.

As I said before I've been living with HIV for over 6 years, but I've been on Stribild for a year as of today (August 23, 2014) I was not required to take any HIV medication, but at the time I was dating someone who was HIV negative and although we both used condoms we felt it would be best to add another layer of protection. There have been plenty of times, once over a month of not having access to my medication. Access to care and treatment has not been as easy as it is portrayed.

On April 24, 1980, Ken Horne, a resident of San Francisco became the first recognized AIDS case in the United States. Reported to the Center for Disease Control with Kaposi's sarcoma (KS) and also suffering from Cryptococcus neoformans.

October 31 that same year Gaëtan Dugas a flight attendant of French-Canadian decent made his first visit to New York City bathhouses. For his connection to many of the AIDS cases in the United States he would later become known as patient zero.

Today there are more than 30 different treatment options and people in care are living long healthy lives, but rate of HIV infections and AIDS deaths among Blacks is beyond alarming and the accounts as to why the numbers are the way they are is told drastically different from those providing care and those receiving it.

“You can’t help or engage people sitting in some office way on the other side of town”

says Cliff who has been living with HIV for 4 years. “The past three years have been horrible with so many changes in my care and no one even knows what is going on. There are far too many people having meetings and making changes to my care without even speaking with me which make it difficult for me to trust how my care is administered. I seriously don’t think I will be in care by the end of the year if not sooner than that. It’s just too much to deal with and 90% of it has nothing to do with HIV whatsoever.”

One thing is for certain, something besides stigma, guilt or lack of education is playing key roles in how HIV and AIDS affects Blacks and there is far more to this story than we are being told. Moreover access to education, testing, care and treatment should be located in neighborhoods carrying the heaviest burden.

HIV and AIDS will end when we take the fight to the front lines