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by Diedra Levi, CEO, The Living Affected Corporation
(As an advocate, in the field of sexual and reproductive health in Arkansas, I hear the crisis of getting people that are HIV positive into care over and over again. I am also in personal conflict on evidence based interventions as prevention methods. I think common sense leads us to enforcing the human rights framework before any science really works for those living or affected.)
In Arkansas, over 4000 people that are HIV positive are not in care. Why? “Why” has been the question for many of us. I, personally, have come to the conclusion that the people not in care have resigned their selves to dying because life, as they know it, gives them no reason to continue to want to live after diagnosis. I cannot tell you how it is to live with this disease inside of my body. I can tell you how it is to have this disease in my life. I have seen so many die that I have lost the sense of loss. Many of you knew my friend, Patrick. I remember him calling me while I still lived in Tulsa and telling me that his doctor said that he had only six more months to live. I searched all around my brain to find some words to console him. I told him to make his doctor a liar and live. He lived for 5 more years. But did he really? Did he really live?
Patrick had listened to the doctor and watched for death for the next few years. His outward appearance had changed so drastically that he was self-conscious about people looking at him. He couldn’t stay at any functions long without being offended by a stare. Usually the stare was simply someone recognizing who he was. I tried so hard to get him to participate in things other than waiting for death. I argued with him about going to the doctor and eating so often that it became routine. I was selfish and wanted my friend to get better and hang out with me like he used to. I even convinced him to go back into treatment. In treatment, he was told that he had 7 T-Cells. How encouraging was that? He also had to get $5 from me so that he could get some gas to go get a fuel card to make it to and from his doctor’s visit. When Patrick died I had interaction with his family who, like many, did not want HIV/AIDS to have anything to do with his demise. They also didn’t want any of his life mentioned because they were ashamed of him. He was denied his personhood in death.
Then there is Carl. Carl is such a loving soul tormented by the two most stigmatized diseases on Earth, mental illness and HIV/AIDS. Carl just recently found out that the psyche drug he has been taking for 3 years suppresses his white blood cells. He even had to make the decision of buying his AIDS meds or paying rent. He chose rent. By some, this decision would make you question Carl’s intelligence. Carl chose his quality of life and no one has the right to judge that.
There have been calls in the night to visit other friends in the hospital and by morning they were dead. There have been medical anomalies brought forth by AIDS that have taken my breath away. I remember when Junior’s brother, Dennis, was hospitalized with a cancerous tumor behind his eye. Patrick and I went to visit him. When we walked in and saw Junior sitting by the bed next to Dennis in the dark. I flipped the light switch and Patrick collapsed in tears. Dennis’ head was twice its normal size. I later admonished Junior for not giving us fair warning. Dennis was released from the hospital but needed constant care. I remember bathing him in the tub in oatmeal and other herbs to help with the sores that were all over his body. His hair had matted with extensions in it and I brought my new clippers over and cut his hair. The clippers never worked again and I never saw him alive again.
I have heard horror stories of intentionally infecting and the casualties of criminalization. Women, by my account, have the most horrific stories. It is the pain of betrayal that enables me to relate. In the women’s stories, the men run from their children, the woman, and leave the disease. I have digressed into these stories to reiterate what I believe is the key to ending the epidemic. We must give people a reason to want to live. The dis-ease of life probably began prior to the diagnosis of HIV. Through misogyny, homophobia, apathy, racism, and classism we encourage groups of people that are not like us to die. We then expect the same people to believe that we suddenly care about them because they have HIV. The truth of the matter is that we have all concentrated on the epidemic and not the person(s). We have mastered and PhD’d public health to the point that we forgot that the least common denominator of the public is a person, a human being. Let us try giving a person an education, a meaningful job, a decent place to live, nutritious food and comprehensive medical care. Our unmet need of over 4000 people would disappear because we are addressing the person’s unmet need not the epidemics. This is real care and it is possible. Anything less is folly. People, not programs are important. We’ve made HIV/AIDS care and prevention into a machine; a science based apparatus that no longer renders the results needed.
Let’s think about it another way. If one tenth of the people without care wanted care, we would have over 400 people on the waiting list to receive care. Although this may raise the eyebrows of legislators who believe we have everything under control, the bottom line is that we don’t have enough funds to take care of our people with unmet needs in HIV care. Without Ryan White funding from the Federal Government, we have no funds. Yet, we have those that want to decrease Washington’s spending without understanding that it is all that we have. It becomes a death sentence for someone who has not committed a crime. Housing, employment, food, treatment, and education (HEFTE) is care. I hope not to have the discussion again about getting people into care until we decide to actually care about people. For more information contact www.livingaffected.org or all 1.877.902.7HIV