More than a death sentence…

Thirty years ago, the United States experienced a pandemic unrivaled since the Black Plague in Europe. A disease surfaced with no cure, no treatment, nothing. The only thing that was available was hospice care for the infected. The disease…. Human Immunodeficiency Virus – HIV.
At the time, being diagnosed with HIV was like being on death row – except without any appeals. Since then about 600,000 have died from complications resulting from HIV. Today, I have met people that have been living with HIV for over 15 years, but that was not always how it was. In the 80’s there was no survival rate; you got HIV – you died. Today, we might be heading in the same course. As advocacy for domestic HIV decreases so does its funding. For instance, in Ohio there is a waiting list for people who can’t afford their HIV medications, and many patients who are getting assistance are not getting all of their medications. Although, as Barak Obama says, “We are citizens of the world” – which is true – we need to consider the needs of our kin before looking outside our house. The HIV / AIDS epidemic is unequivocally worse in Africa than it is in the United States, but who is to say if we neglect the needs of American’s then our incidence won’t increase to a level that is just as unimaginable as was in the 80’s.
To get off of my public health soap box, I am going to transition into the one – on – one interactions that I have had with people both living with HIV and those that have had a significant other in their life die because of it.
Joe Smith (with a clearly changed name) is a 55 year old African American, film maker, concession worker for the Cleveland Browns, and an HIV advocate. I was fortunate to hear his life story while I was visiting the AIDS Task Force of Greater Cleveland. He was diagnosed with HIV 16 years ago and has been living with it ever since. He grew up in a small southern Georgia town in a relatively conservative family. Throughout his entire life, he has struggled with his sexual orientation. Since his family was conservative, he could not come out as gay to his family. Joe coped with this added stress by turning to drugs (pretty much every kind you can think of) and alcohol. As he says, “For twenty years, I did not live my life. The drugs lived my life, and I was just along for the ride.” Living his risky lifestyle, sharing needles, unprotected sex (especially men with men), etc he contracted HIV. Throughout his life, Joe had been to a lot of funerals for all of his friends that had died of HIV, and he decided to change his life with this. Since then, he is on the mend, “living life day by day”, decades later he is still alive and healthy, taking classes at Cleveland State University and has a passion for becoming a movie director. One could say Joe is lucky. However, the recently his Social Security was cut (lack of government funding) and he has no way of paying for his medications. Within months all clinical signs of HIV will return and he will potentially be dead within 16 months.
The Rodriguez family moved to America from Cuba to start a new life. Jose, the father, moved first to get a job and to send for this wife, and daughter. Six months in America, Jose’s wife, Clara, got a letter saying that Jose has found another woman and is leaving Clara and their daughter, Maria. A year later, Clara gathered enough money and moved both Maria and herself to the Cleveland, Ohio area and obtained a job working in a factory. This was enough money to support her family, and allow Maria to go to a public school and succeed; Clara was going to go to college. However, at the end of the first year, Clara got a phone call from Jose, saying that he was so sorry that he left and he wants to come back into his ex-wife’s and daughter’s life. As Maria described, it was her mother’s loving heart that made her take him back. In that year, Jose had a child with his mistress and during childbirth his mistress died. Clara’s loving heart again, decided that she was going to raise this extra child as her own. However, 6 months after the family reunited Clara got really sick and was forced to go to the hospital.
At the hospital, she was diagnosed with HIV. This was a surprise because she was celibate since moving to Cleveland. As part of the diagnosis, Jose was tested and he was also HIV positive. As it turned out, Jose’s mistress was living with undiagnosed HIV (which caused the complications during childbirth) and had even passed it on to their newborn daughter. Maria, now living with both of her parents and her sister as HIV, had to drop out of school – forgetting her dreams of college, to support her family.
Within five years, all three members of her family were dead and for a while Maria had survivor’s guilt (feeling guilty for being the one that survived) and turned to alcohol to help her deal with the issues / betrayal that has happened in her life. What moved me in this story, is the concept that the one’s with HIV are hardly the only people effected with this awful disease. Decisions and in turn their consequences are not made in a vacuum and even though a small proportion of America has HIV – it is truly an epidemic that affects us all.