As a writer, one hopes at least one piece you write in your lifetime has a beneficial impact on people. Three years ago when I first publicly disclosed my HIV-positive status here on the Huffington Post and in my personal blog simultaneously, little did I know that piece would affect so many people around the world.
At the time I posted "Five Years On: My Diagnosis And Mission Living As HIV+" in 2008, I didn't really have an idea how few people in the world had actually written such a piece, let alone one so personal in nature. Even less did I understand how many people who feared they had contracted HIV had been looking for a positive story to give them a little bit of hope. To date it is still my most widely-read piece, with thousands of individual reads since 2008.
What I also discovered, though, is I have changed a great deal since that World AIDS Day "coming out" story, as has the fight to eradicate HIV/AIDS. What I understand now, of course, is that I was really coming out a second time. I had been "out" as a gay man for many years, having done so in the early 1990s. By comparison, "coming out as gay" was much easier than "coming out as poz." Now I understand that the latter was a much bigger growth experience for me.
Three years later, my life has changed dramatically, and the global fight to prevent new HIV infections, efforts to fund research for a cure, and pushes to more effectively treat survivors' needs goes on. Since writing the story in 2008, I have been fortunate to have a long run of successful news and opinion pieces published. I hosted a daily talk show on a streaming station that I created with colleagues from my previous jobs. I even began writing a book about living positively.
On the flip-side, though, I suffered through a break up with my partner of seven years, was financially crippled by the loss of my consulting business, and was forced by necessity to move away from Chicago back to the Madison, W.I., area with my family. I was forced to go on public assistance and move back in with them to survive. I faced unemployment, isolation, loneliness, and depression on a daily, if not hourly, basis. The reset button on my life was again triggered.
This time, though, I rebounded in a very curious way.
This time, because of what I had been through in the previous eight years, I had the inner strength and courage to completely start over from scratch, while not letting go of my own self worth or my pride at being a "survivor" with HIV. My status actually became a motivating factor, reminding me that I had been through tougher stuff than this and survived, even thrived. This time, with the help of colleagues who knew my work, I began writing for an LGBTQ newspaper and website in Milwaukee, covering news in Madison and across the state during the height of the protest season of winter and early spring 2011.
After being laid off from that job, I quickly re-learned that I could continue to improve my life and self, as an individual; but also as part of a family that loved me very much, with new friends who were also becoming like family. I was fortunate to spend a couple wonderful months being "Uncle Scott" to my 11-year-old niece, who came back from Arizona to Wisconsin to spend the summer with my parents and me, swimming on a local recreational team. I picked up a new job with a global hospitality company with a terrific diversity policy, great health care benefits, and supportive co-workers who really care about me as a colleague and human being.
Now, as I memorialize my former relationship with someone I loved very much, and lament that there is as yet no cure for HIV, I see light in the tunnel moving forward. Seemingly every month there is an increased emphasis on surviving HIV, and the growth of my life, not just stemming the tide of decline. Over the past year I've re-engaged in a workout program that has made me stronger and healthier than I have been since my college years; such that I hope to do a marathon within the next year, and perhaps a triathlon after that. I have re-committed to healthy eating habits, and dropped a major amount of body mass, raising my overall health and mental well being immensely.
Through my new job I have finally been able to secure full medical insurance benefits -- one of the hardest things for an HIV-positive individual to attain or maintain. The coverage is expensive, and I pay a substantial premium deducted from each weekly paycheck to have them. Due to these comprehensive medical, dental, vision, and prescription benefits, combined with the benefits I receive from AIDS Network Wisconsin, the Wisconsin Aids Drug Assistance Program (ADAP), and excellent care at UW Hospital's Infectious Disease Clinic in Madison; I finally have been able to regain the peak health I knew before contracting the HIV virus.
My viral load is undetectable, and my immunity levels are excellent for someone with HIV, thanks to the "horse pill" I take nightly in the form of Atripla. A combination single-dose prescription that keeps "the bug" at bay, it comes with an estimated real cost of more than $2,500 per month before the prescription drug and ADAP coverage, which picks up most of it.
There is still an incredibly huge elephant in the room today when discussing living as a survivor with HIV, as well as the global fight to eradicate HIV/AIDS. It is the fact that we still don't have a cure. Despite being one of the world's most aggressive killers globally (an estimated 30 million people have it today), when compared with other chronic diseases, HIV/AIDS receives a fraction of the financial support for research or prevention efforts. Much of this shortfall comes from the stigma that still hovers over people who carry the virus or disease as "deserving it" or "cursed by God" as labeled by fundamentalist, conservative, evangelical, and political leaders of all stripes.
The stigma attempts to push aside the truth that no one "deserves" to contract a disease that is spread by sexual contact, needle-sharing, environment, etc. It is a symptom of a different problem -- that of a lack of research funding for a cure, and for prevention intervention in the spread of the disease through a complicated web of relationships, sexual networking, or under the scourge of illegal drug use. People who don't have it judge those who do, even though they themselves practice similar pre-exposure behaviors like illicit sex, drug use, down-low bisexuality, etc. The reality is that they are just one or two degrees away from being a victim themselves, whether they admit it or not.
In the past two years we have seen a massive shift towards increased research, global prophylactic HIV prevention through PrEP (Pre-Exposure Prophylaxis), and massive collaboration between U.N. member countries, the U.S. CDC, and other infectious disease research and treatment initiatives. More money has been funneled to global HIV/AIDS intervention, and a full-on initiative to eradicate the spread of the virus has led to partnerships that were unimaginable during the time I was diagnosed. It is still minute compared to the money that is raised and spent on various cancers, or other diseases.
In the global community there is massively higher awareness, most notably the annual World AIDS Day initiative on December 1st every year, spreading the message that living with HIV is not a death sentence, while reminding the Earth that entire generations of human beings have died from AIDS since it was discovered in the mid-1970s, exploded globally in the 1980s and 1990s, continuing through today. Unfortunately that awareness also comes with a fair amount of complacency, especially amongst communities at risk, who may think HIV/AIDS is someone else's problem, or that it is treatable with few inconveniences because of the available medications like the one I take.
This perception is why I continue to live out in the open as an HIV+ individual, with no shame, with zero tolerance for ignorance when discussing it, and always in an authentic, real, non-sugar-coated manner. Having HIV is no picnic, but it is no nightmare either. It is part of me, just like getting up in the morning. I keep it under control by being radically aggressive in taking care of my own immune system, getting enough sleep, working out regularly, practicing balanced nutrition, reducing my stress levels as much as possible, maintaining rigorous surveillance of the virus living inside my cells, and never missing my nightly meds.
Sounds like a lot of work, right? Well it is. That is exactly why we need to continue to educate, prevent, and do everything we can to stop the spread of the virus. It is why every human being needs to be aware that they are just a few degrees away from someone who is living with HIV, and might not even know it. It is why we must continue to pursue a cure with the same vigor and resolve that we pursue cures for cancer, diabetes, coronary and arthritic conditions, and other chronic ailments. It is why we must fight the stigma that surrounds HIV/AIDS, with the same compassion and intelligent conversation that has eradicated the stigmas surrounding mental illness, cancer, or polio.
On this World AIDS Day, it is important for me to tell those who are newly diagnosed to understand, having HIV does not mean your life is over. You have a lot to live for, and I am an example of what happens when one doesn't give up. On this World AIDS Day there is a lot of hope for a cure. A vaccine for HIV is in clinical trials right now, although it is a decade away from being even close to deployment.
We know, however, how to live our best lives right now, while we continue to grow and thrive despite the challenges we face in doing so. We can and will beat this thing. It is up to every one of us to stand up and tell the world that we are not taking it laying down, but rather standing up and being counted as the proud survivors we are; one at a time, with a unified call for a future without HIV/AIDS.