World AIDS Day 2007: What about the day AFTER?
Sharon D. Allison-Ottey, MD www.sharondeniseallisonottey.com
Millions of persons around the world observed World AIDS Day 2007 in various ways. I participated in an event in Maryland as well as interviews and speeches in the days leading up to and on December 1st. My commitment to HIV/AIDS education, research and advocacy is ever present and growing. Since I first learned of HIV/AIDS as a young medical student many years ago, I’ve been fascinated by this disease. Little did I know that this exposure to patients in the early days of HIV/AIDS would spark an interest and compassion that would manifest itself throughout my life. How could I have known that the lessons that I learned from my first AIDS patients actually would teach me about the science of the virus and disease but more importantly about the “heart” and the human face of those infected and affected.
I so remember my first AIDS patients from medical school in the 90s, their prognosis was bleak. The majority of the patients were Caucasian homosexual males and intravenous drug (IV) users who had the “misfortune” of living in the eastern part of North Carolina. The residents of this part of the state were often not open “different” people; whether the difference was found in race, religion or sexual orientation. This is certainly does not discount the efforts of the many healthcare professionals and others that worked tirelessly for these patients. However, there was a huge stigma that did exist in the early days with HIV/AIDS worldwide . This stigma was even more pathologic in some areas/regions of the United States and other countries. Many of the AIDS patients’ families, friends and indeed lovers had abandoned them and they were simply left to die. As a wide eyed medical student, I remember vividly a male patient who had herpetic lesions literally all over his body. There wasn’t more than an inch of skin spared by the herpes sores. The herpes virus was in an uproar because of the presence of AIDS and his severely weakened immune system. I couldn’t hide my initial horror and my empathy for his suffering as we examined him. I knew what one cold sore felt like on my lip; I couldn’t imagine hundreds or thousands of them all over my body. I quickly tried to wipe away my tears, it was not professional to cry; even when my heart was breaking for this patient. The patient ended up comforting me; “I’m okay; I’m a tough bird, a speckled one-- but tough.” He said with a slight smile as he extended his painful, sore ridden hand and patted me on my back.
I remember the first African American female that I ever met with AIDS and boy was she was a character! The patient was an IV drug user who was still in the throws of her addiction; she was a master con artist and was in and out of the hospital. This patient would sneak out of the hospital with her IV line in place, this provided easy access for her boyfriend to shoot her up in the parking lot. The couple would have sex in the car after she got her fix. Afterwards, the patient would come back into her nice clean private hospital room with 24 hour service and nurses at her beck and call. This was like a hotel for her, it was also comforting because she knew the staff and had a level of notoriety; she was the “queen” on the floor. Further, the hospital provided much better than living conditions than her home which was always changing. I believed then, as I do now, that you can learn something from absolutely everyone that you meet and that you can’t discount those lessons whether from a college professor or a junkie. I’d talk with her and learned about her life through these chats. She was a masterful con artist so I was constantly sorting fact from fiction and dodging her manipulations. Almost daily, she would ask for $2.00 or less, (never more) so that she could buy candy or a card for her mother, at least that is what she told me and the other medical students, residents, nurses, cleaning crew and anyone who would listen. I imagine that she amassed a hundred or more dollars over the course of a week as we all slowly learned that we were all “buying her candy.” Ironically, we never saw her eat any candy or have a stash in her room. This patient was a “hospital celebrity” partially because of her antics but moreso because of her disease. She had a rare disease because of AIDS called “Wolfman’s Syndrome” which resulted in excessive hair all over her body. This oddity made her a prime candidate for medical students, interns/residents and other physicians eager to learn more about HIV/AIDS. Further, this was in the early 90s and the HIV/AIDS epidemic wasn’t common in women at that time.
This fascinating patient became the subject of my mandatory case presentation during my Internal Medicine rotation. This had special meaning for me because I’d decided that Internal Medicine would be my specialty. I was hooked on Internal Medicine within the first days of my rotation; I had never met doctors that were so smart. I was dedicated to her case and fully examined her several times, completed an in depth review of her extensive medical history and treatment course and spent hours in the library doing research. I put together what I thought was a stellar presentation; I took a different direction and focused on her medical, psychiatric and social conditions. Yes, I looked at the “whole” patient and worked on what I thought should be the best plan of action to address her case. I talked about her addiction, low self esteem, the rape as a child and subsequent mistrust of men; I talked about her financial imprisonment and dependence on men to take care of her and her one living child. My presentation included her guilt over delivering a HIV positive baby who died within the first year of life. I delved into the hurt and pain of having her family abandon her. Yes, I discussed her physical conditions and the cruel facts that were her daily reality. I told my classmates and instructor of the humiliation and shame that she experienced when she ventured into the real world. This patient had bravely told me of the pain of rejection and feeling like a “freak” when she walked on the streets because people would stare at best and spew venom at worst when they saw her. I shared her tearful stories of children who screamed at the sight of her and of her only living child being afraid to touch her. We talked about her current boyfriend that was also an addict and living with AIDS. I was also very committed to presenting the medical facts in her case and went into great detail about her T cell counts, organ damage, status of the disease and long term prognosis. The medications, to which she was no longer responding, were discussed in detail along with the reality of her not being able to afford them once she was released from the hospital. I proudly whipped out my impressive diagrams and charts and put them on the overhead projector and I completed in my mind, this award winning presentation.
This became more than a routine presentation for me; I was uniquely engrossed in this patient’s case. I delved indepth into this patient that was like me, an African American female living in North Carolina. However, unlike me she didn’t have the love of family, friends and the hope of a long life. She had AIDS and was a junkie with no hope and only her next con to keep her motivated. I must admit that I was moved to tears at the end of the presentation as I was forced to conclude after all of the facts and scientific evidence that she would probably not live more than 3 months if she stayed in the hospital and less than 3 weeks if she were discharged.
My classmates asked questions after the presentation, as we often did, and I eagerly anticipated my attending physician’s response. I was ready, I’d practiced this presentation in front of a few of my closest classmates that I knew would be honest and ask piercing questions. I wanted to nail this presentation not only for me but also for the patient as her treatment plan would be discussed with the attending and major decisions made. My attending waited for the questions/comments from classmates then asked a few questions on her medical history and treatment. However, the life changing moment came for me when he coldly asked “Is she worth all of the time and resources that you’ve spent and propose to spend?” He further went on to poise the philosophical question of need for care, expense for care and the time/energy that it would take to sustain her life for even a few more months. This seasoned physician made comparisons for her treatment, the cost to the hospital, the state and the government versus the number of children that may not receive care because the funds would be spent on her. He further challenged me on the number of hours that I’d already spent with her and told me essentially that her social history had no merit as it related to her medical course of treatment. When I challenged him and defended her care, a few of my classmates joined me in the discussion. This became a heated debate and finally the attending physician said that I’d wasted my time on a patient that would be dead in a few weeks and that I would be one of the few,if any, that would mourn.
I was floored and devastated but I fought back tears as I continued to advocate for her treatment. As I was mid sentence talking about the issue of access to transportation and the need for follow up; the attending abruptly said “Thank you” which was code for shut up and sit down. We moved to the next case and I sat stoically with my face burning with initial pain that quickly turned to rage as I fully understood his objections. This rage was fueled as I heard the next case of a 22 plus year smoker with chronic obstructive pulmonary disease (COPD). This patient was also in and out of the hospital and was still smoking two packs a day. This case was discussed by my fellow classmate, although not with the painstaking detail that I’d provided for my case. The attending physician listened intently and we agreed with the overall plan.
I was struck with the amount of empathy that was shown for this patient and the fact that his tobacco addiction was never addressed as an “addiction”. I boldly raised the issue of cost, medical expense and “worth” as was poised to me during my presentation. My attending was obviously annoyed and it was interpreted as a personal confrontation. His face twisted as he looked at me and told me that I didn’t have the “stomach” for Internal Medicine and the decisions that would have to be made on a daily basis. He dismissed my arguments and moved the presentations along. However, I never felt comfortable with this attending again but I didn’t let his words deter me. I actually thought of him many years later as I accepted an award from the American College of Physicians (the national organization of Internal Medicine physicians) for my research on HIV/AIDS. I have to thank him for neither of us could have known that his prejudices and shortsightedness would provide fuel for my commitment to HIV/AIDS.
That was decades ago, but is a memory woven into the fabric of my life’s experiences. The patient did die within a few months just as most AIDS patients did in the 90s. However, she taught me that this disease, like most of medicine, is all encompassing and cannot be distilled down to a simple diagram on the board and prescription. The disease is only a part of who the patient is and is not the definition of them. I had no idea that in the years between my first AIDS patients and evolving career to follow that I would have completed pioneering research on HIV/AIDS, educated tens of thousands on the disease, facilitated free testing of thousands, and written a novel that has been read all over the country wherein the main character is an African American woman with AIDS. The novel, “All I Ever Did Was Love a Man” is a fictional story that takes the reader on a journey into the life of the main character; mind, body and soul. The very fabric of my life has been interwoven with this disease and my heart has forever been changed. I’ve spent many Dec. 1st in different venues addressing the issue of HIV/AIDS and as long as there is a breath in my body and this disease is not curable; I’ll continue to demand education, awareness, understanding, and treatment for all of God’s children that are infected and affected by HIV/AIDS.
My question for the millions that observe the day is simple; what about December 2nd and the days after? What happens when the red ribbons no longer grace the lapel? What happens when the political speeches end and the funding that’s promised gets bogged down in bureaucracy? What happens when yet another baby becomes an orphan due to this disease? What happens when another mother buries her son or daughter who dies in the prime of their life? Yes, I ask America and indeed the World; what happens when the cameras are gone, there are no headlines in the newspaper and December 1st is yet a memory. What happens when another 27 year old African American woman goes to the doctor and is told that she has HIV? What about the 73 year old Caucasian widow who lives in an assisted living condo and has a younger “friend” whom he sees once a month that exposes him to the virus? What happens when we hear of the thousands of persons worldwide who are dying with AIDS due to lack of affordable medications? What about the 12 year old that has no idea what a condom is but is dared to have sex with a 15 year old at a party in the closet so that she can fit in? What do we do when rumors start on our job about a co-worker? What do we do when our minister or clergy preaches that HIV/AIDS is a curse from God? What about the married female in her 50s that is told by her husband that he’s been unfaithful and living a double life with another man? What happens when our sons, daughters, friends, mothers, fathers, grandmothers, grandfathers, aunts, uncles, nieces, nephews and those we love tell us that they have HIV or AIDS? What do we say or do when it is our boyfriend, girlfriend, fiancée, husband or wife? What happens when your doctor tells you that you are HIV positive?
Do we wear the red ribbon on the outside for a day or two or do we pin it our hearts and commit to making a difference in this fight against the disease and all of the prejudice/injustices that often accompany it? What happens on December 2nd, what do you personally do to protect, prevent, provide, and move towards a world when there is no need for a December 1st? To read and learn more visit me at www.sharondeniseallisonottey.com.