Why is Amazon.com pushing "Goodbye AIDS" while DC infection rates are on the rise?
While our lawmakers are busy on CNN placing the blame for the financial crisis instead of just trying to solve it, Americans are dealing with an ever-increasing problem - poor or no health insurance. Just as things were beginning to look up for people living with AIDS, it seems as if our medical plans and financial means are running in completely different directions. It is April 1, and only last week I started to whittle down my deductible with my quarterly blood work. Regardless of the gratitude I feel for having a health insurance policy like I do, the company still designs creative ways to prevent me from reaching that elusive $2,000 goal. The annual co-payment maximum is so out of reach, I do not even bother to remember it anymore. I just know that it is going to take at least two weeks of major hospital care to reach it. Finally, after dozens of prescriptions and refills, I finally discovered generics that work, thus keeping that cost down as low as possible. However, it remains a challenge, thanks to the gods of financial deregulation, just making the $500 each month to keep the policy in place.
I recently flew back from a trip to DC and NYC, enjoying the New York Times on my flight. There was a story discussing a man battling prostate cancer. To prepare for his "battle" his shaved his head, likening himself to a warrior. It made me think about my "battle suit." I realized it was my black Armani Suit. In a well-fitted Italian suit, anyone can look successful, confident, and, yes, even healthy. During one visit to my doctor, I was very sick but very dressed up. The nurse commented on that, saying that I could not feel that bad because I looked so good. I told her, "Start to worry when my sense of style leaves me. You know it's down to the final count when I start to dress bad." Dressing up is my way of saying, "fuck you" to the virus, "you have not won today."
I was wearing it the other day in DC when I visited Joseph's House, a hospice for homeless individuals with HIV/AIDS. Last World AIDS Day I read about Joseph's House in the Washington Post. It was a story that should have been picked up by the national news. Joseph's House is an amazing place where hospitals and nursing homes send people with no other options to spend their final days. If individuals last a month at Joseph's House, they are considered long time patients. Patty Wudel, Executive Director at Joseph's House, invited me to learn more about their services first hand the next time I was in DC.
Walking into the cozy three-story home in the Adams Morgan section of DC, I was instantly struck by the warmth of the place. It immediately felt like home, as if someone was wrapping me in an invisible security blanket and it was all going to be okay from now on. I expected to find a quiet, delicate place, but instead I found this hive of activity, with individuals running about making sure the work gets done. Chocolate chip cookies were even baking in the kitchen. Who could not fall in love with a place that greets you with a freshly baked chocolate chip cookie?
Wudel shared with me the history and mission of Joseph's House. We discussed the recent reporting of the increase in DC area HIV infections rates. She also told me that their Ryan White Grant had been canceled, for reasons yet unknown. Joseph's House's annual budget depended on that grant. With no knight in shining armor at her door, Wudel was left with no choice but to explain the situation to the staff, stating that she would be forced to make some cuts. Instantly the staff volunteered to do it themselves, working shorter weeks, taking days without pay, in the process solving the problem for Wudel. Such is the fiber that exists at Joseph's House.
Wudel asked me if I would like a tour. I was eager to see the inner workings of such an incredible and much needed place, but was concerned about invading their clients' privacy. I allowed Wudel to do the guiding. She told me that prior to its current incarnation, two people shared this rather large home, as we walked up the stairs leading to the clients' rooms.
Wudel took me into a room of a young man named Jimmy. Right beside Jimmy was a woman who reminded me of my grandmother. I had seen her downstairs and assumed that she was staff. I was wrong. She was Jimmy's mother. She stood beside her son and stroked his hair and caressed his face. I was introduced to them both, and, did my best to keep my composure. Jimmy is this very, very attractive 33-year-old man, with beautiful soft light brown hair, and blue-grey eyes. He was unable to speak clearly and was not able to move his body without difficulty. He was wearing only a hospital gown and diapers. So much was going through my mind, so many questions were screaming to be answered, but I focused only on him, wanting to make him feel comfortable. I reached out and touched his hand after our introductions, and started to make conversation with him. I told him that he had very beautiful eyes. I found out a few minutes after that that he could no longer see with those beautiful eyes.
Jimmy had been HIV positive for quite some time, apparently believing that since he was healthy all was fine and therefore he did not need to go on any drugs or monitor his health. Apparently, he could not have been further from the truth. About a month ago, Jimmy was diagnosed with PML, a very, very rare opportunistic infection that affects people with AIDS. Jimmy's immune system had come crashing down and he was unable to rebuild it in time to fight this demon off. I was stunned for I had not heard of PML until that day. PML is very similar to MS, as it affects the white matter of the brain. However, unlike MS it has no treatment, and life expectancy is about six months. Oddly enough, on Reuters last week, Biogen announced a test for the virus that causes PML. Biogen is not doing this because of people with AIDS, but because it affected their profit margin as a nasty side effect to their recently launched MS drug.
So this beautiful boy, with those amazing blue-grey eyes, probably has about a month left.
This interaction struck me to my core, for it is easy to distance yourself from someone unlike you, but when they are a member of your tribe, and have something that could have just as easily taken you down, its becomes overwhelming. No amount of Armani could have saved me from this emotional bullet.
How can we live in a country where people are only outraged when others make more than them - fairly or not. How can we call ourselves the richest, most powerful nation ever to exist when Jimmys all over the country continue to die? Why can't we just start to actually solve the problems with actions, rather than listening to talking heads drone on and on? Why, as a country, are we so resistant to preventing a problem, preferring instead to rely on the reaction to the crisis to fix the problem?
America, for all of its forward thinking and wanting to be progressive, remains a country steeped in religious guilt. People, incredibly conservative, very religious people, called Puritans, who were seeking refuge from what they considered too liberal of an environment for them and their religious beliefs, founded us. This concept remains in the very fiber of what makes up our country. It is the basis for judging others because of a drug problem, a sexually transmitted disease, or even obesity. Many of us always take the holier than thou road, in order to distance ourselves from the situation, and avoid the pain involved with dealing with it head on.
I had forgotten how lucky I was, that in spite of my own personal fiscal meltdown, that all parables involving your own good health remained true. Apparently, the universe felt I needed a reminder.
As I fool everyone with my Armani suits, deep down inside I remain a scared boy, praying each day that no health crisis will happen that I cannot deal with, that the pills I take morning and night continue to work, that somehow there will be a end to this crisis called AIDS.