This past January I awoke to the news one day that David Bowie had died. My partner Stephen told me as I walked into the kitchen, and I thought it had to be a mistake, some kind of horrible, twisted hoax. When you are 57 years old, as I am, sixty-nine seems way too young to die.
When I graduated from high school in 1976, my parents gave me an all-in-one stereo system that I would play my vinyl records on (it even had a built-in 8-track player!). I would place David Bowie’s album “Young Americans” on the turntable, and listen to it over and over again. I was spellbound by Bowie—his unique sound, poetic lyrics, the androgynous look. Everything about him spoke to me. As a slightly effeminate, young gay man who was still in the process of coming out, I found confidence through Bowie, the sense that everything was going to work out, and that I would eventually come into my own someday. He gave me, and others like me, hope, and made it cool to be different.
This is POSITIVELY AWARE’s 20th Annual HIV Drug Guide, and I’ve been here for all of them; this is my twelfth as editor. Putting together this year’s guide has given all of us here an opportunity to look back and reflect on the many changes that have taken place over the years. While putting together the DHHS Guidelines section on page 18, I was immediately struck by how radically they had changed from just two years ago, when we last ran that section. Last year we removed six drugs from the Drug Guide that are no longer or rarely prescribed, and this year we took out seven more. Many of those drugs saved hundreds of thousands of lives, even my own, but they are now (mostly) relegated to the dustbin of HIV medicine.
While treatment advances have made HIV therapy simpler and safer, it’s more than just “drugs into bodies,” as Enid Vázquez points out in her article on Spencer Cox in this issue. Spencer provided the activist comments in our first Drug Guide in 1997, and was instrumental in helping design the clinical trials for protease inhibitors that kept me and many others alive, but ultimately he stopped treatment himself and died in December 2012, at the young age of 44. Spencer’s untimely death brought renewed attention to underlying issues such as mental health, substance abuse, and financial instability that need to be addressed in order to be successful in treating HIV.
It seems oddly surreal in many ways to see my (and many others’) journey through life with HIV reflected in the pages of this magazine. I am incredibly fortunate to be alive, and I give a lot of that credit to POSITIVELY AWARE and TPAN, because working here forced me to learn about the benefits of treatment, and the importance of treating the whole individual. I’m not sure if I hadn’t come to work here over 23 years ago, that I would have paid as much attention to that, at least not in 1992.
I encourage you to use this issue as a guide, but then take it upon yourself to create your own plan and path to wellness. If you’re depressed or feel isolated, talk to someone at a support group or even an online community (there are many on Facebook such as the “International place for people with HIV/AIDS, and the people who love us” or “HIV Long Term Survivors”). If you are using, there are resources to help you get and stay sober (AA, NA, or CMA) or at the very least play safely and sanely (such as tweaker.org). Seek out an HIV case manager at the nearest AIDS service organization in your area who can help you see if there are financial resources available to you to help ease some of the stresses of day-to-day living. Consult with a provider who is knowledgeable about HIV/AIDS, and come prepared with a list of questions about potential side effects and drug interactions that you might be concerned about. If you want to simplify your treatment or help make it easier for you to take it every day as prescribed, see if there is something better that will work for you.
Much has changed in 20 years: the dawn of the Internet, smart phones, social media, even treatment for HIV—but one constant remains. Treating HIV is as much an art as it is a science. Change is inevitable, but by embracing it we “turn and face the strange,” as Bowie aptly put it, and become the architects of our own future, and masters of our destiny.
Take care of yourself, and each other.
