Throughout this book, I’ve told stories of heroes in the war on AIDS as examples of how fortitude and perseverance can lead to victory, even when battling our dysfunctional healthcare system. As I readied this manuscript for the printer, I realized I needed to tell one more story, a truly inspirational account of personal commitment and courage. It’s the story of Harry Wingfield.
In Chapter 9, I mentioned Harry, a songwriter and musician who had been fired from his job in UAB’s theater department when his HIV-positive status became known. After participating in the L–697,661 study, Harry suffered additional bouts of pneumocystis pneumonia, the last of which, in 1995, was so severe that his family was called in to say good-bye. Fortunately, Harry survived that episode and went on to catch successive waves of new, more effective antiretroviral cocktails that ultimately returned him to good health.
Over the next few years, Harry continued to do well. He worked in his garden every day and was volunteering at the 1917 Clinic. Then, in 2002, the clinical trials research group at our clinic found itself in a crisis of sorts: The person who had managed the regulatory documents—Institutional Review Board paperwork, correspondence with pharmaceutical sponsors, and the like—had just resigned and left the office in a mess, with backed-up paperwork stacked on the desk and even the floor. Harry asked if he could take a shot at reorganizing the office, and we said, “Please do!”
In less than a month, Harry had revamped the entire operation. He submitted delinquent documents, filed stacks of papers into newly-created filing systems, and brought the entire operation into real time, responding to requests as they came in rather than shuffling them into stacks.
One afternoon Harry came to me with a concerned look on his face. “I have a dilemma,” he said. “I’ve been on disability ever since the theater department fired me and I really would like to come off of disability and go to work … with you.” We needed to fill the position in the regulatory office; Harry had more than proved his worth through the remarkable transformation he created there. “So what’s the dilemma?” I asked.
Harry listed his concerns: “Well, what if I come off of disability and find I can’t do the work long term? I have only been doing this a month, and I am pretty tired when I get home. What happens if I discover over time that I am really not up to it? I get all my health insurance through Medicare, and that requires me to have been on disabled status for two years. If I come to work for you, I lose that status. If I find I need to go back on disability because I can’t sustain the effort, can I get back on Medicare?”
We had filed plenty of applications to put people on disability, but rarely were we asked by a patient to come off of disability! So I didn’t have answers to Harry’s questions at that moment, but I was determined to get them. I thanked him for his courage and desire to do this and promised him we would do everything possible to assure his success no matter how things turned out.
Working with the Social Security Administration, we were able to arrange for Harry to come off of disability with a path back to that status if he couldn’t do the work. Harry came to work for us that summer and stayed for several years until he was hired away from us—by the UAB Institutional Review Board itself! They were so impressed with his organizational skills, attention to detail, work ethic, and knowledge of regulatory requirements that they stole him from us. I was never so pleased to lose a valued employee.
To me, this was one of our sweetest victories in the war on AIDS. So many others who were as sick as Harry never made it to the new life-saving drug cocktails. Among those who did survive to try newer drugs, many never regained enough function to go back to work full time. And even if they regained function, many lacked the courage to take on new careers and other challenges. Harry’s story represents the triumph of science over an evil virus, the triumph of the Ryan White CARE Act over gaps in coverage, the triumph of flexibility over inertia in the Social Security system—and the triumph of a single individual’s bravery over fear and uncertainty.
Above all, Harry’s story is proof that we can improve healthcare in America by listening to our patients and putting their needs first. That’s what we must remember, and what we must commit to, in this pivotal period for healthcare policy and reform. If we honor that commitment with reason and compassion, the results are bound to be positive.