August 17, 2011
"If I could go back in time to the moment before I started HIV treatment, what piece of advice would I give myself?" I would advise myself to approach my decision the exact same way. I didn't begin treatment until seven or eight years after my diagnosis. As a librarian I was heavy into research and worked to find out as much as I could about the current treatments available. I read Websites like TheBody.com, and read POZ magazine from cover to cover.
What was apparent from the very beginning was that there were not many options. For that reason I made up my mind that I would wait. Having heard any number of stories about AZT (Retrovir, zidovudine), many of which were horrors, I prayed and asked GOD to sustain me to a time when my options would increase. After the prayer came the conscious decision that I would not begin a med regimen until my natural body told me it was time.
I continued to read and research all of the newly FDA-approved meds, reading each description of each new med including the side effects, as well as the new magazines which became available. I have shared with you all that I know I was infected in 1989, and tested HIV positive in March 1991. In August of 1992 I married my first wife, and my son was born in November of 1992. I was in the first semester of graduate school. I finished in August of 1993 and immediately moved from Pittsburgh, Pa., to Washington, D.C. I began my first professional appointment as a children's librarian. The only person who knew that I was HIV positive, outside of my wife's physician, was my wife. I had convinced myself that from things that I heard and reading that if I were to seek treatment the medical insurance carriers of my employer would in fact inform my employer that I was HIV positive. So during the two years I served as a children's librarian for the Southwest Branch Library of the District of Columbia Public Library, I sought medical care at Whitman-Walker Medical Clinic. Only my wife and son used the private health insurance provider that I had.
Then I received an opportunity to take a position in a public library in New Jersey, where my wife was from. I accepted the position with the thought that I could take my wife and son back New Jersey where she would have the support of her family and I could die. The isolation from not sharing my status had me in a mental and emotional deep dark place, and I believed that I would never again see light.
Whitman-Walker Clinic armed me with referrals; one month after moving to New Jersey, finding a school for my son, a place for my family to live and starting my new position, my T cells had gone from 351 to 67. Still not wanting to use the private insurance provider, a case manager at GMHC in New York provided a referral for the Ryan White Outreach Clinic in South Orange, New Jersey. I need a prescription for Bactrim (co-trimoxazole) filled. I quickly found out that I was allergic to the stuff.
It wasn't until 1998 that I started my first medication regimen. Right now I can only remember that Norvir (ritonavir) was one of them. For me, out of the gate and taking 21 pills a day, this involved: seven pills in the morning as I prepared to get my son and myself out of the house for school and work; seven during the midday while serving as a manager in a public library; and seven in the evening after picking my son up from school and attending any number of afterschool activities I had scheduled for him. Not to mention I still had to prepare dinner when we got home, get him in and out of the bathtub and read a bedtime story.
I wouldn't change a single thing. I trusted myself, my God and my instincts to make the decisions I felt were best for me. These decisions were not always in agreement with my infectious disease physician, but I had done my own homework and developed a sense of what my body needed and could handle. It is amazing, when "my soul looks back in wonder how I got over." Look how far we have come. In April of 2010 I started Atripla (efavirenz/tenofovir/FTC), one pill a day.
What piece of advice would I give you? Read, share and trust yourself for what you need. Be the Chair of your own Board and allow the physicians, case managers, and others have a seat at your table.