June 3rd was my 45th birthday. When I tested positive at the age of 20, I was told that if I was lucky, I might live two years. My mother spent a few years preparing herself, and agreed to make my final arrangements according to my wishes, not hers. It was the most loving and parental thing either of my parents ever did for me. Then she got a mild form of cancer. Even then no one in my family, or in the medical community, expected that I would out live her. But every three months for eight years, I went to the doctor and my life expectancy was raised by exactly three months. A year after anti-viral treatment became available, my mom died of her cancer. She died shortly after hitting her lifetime health insurance cap at the age of 57. Then, two years later, I hit the lifetime cap on my health insurance at the age of 29. I had to switch jobs to get coverage. The move required that I go without coverage for a very scary six months. A few years later, I had to quit that job because it’s high stress demands were costing me T-Cells. Luckily, by that time, I was in a relationship that allowed me to get covered under my domestic partner’s policy. During the seven years we were together, my medications, my quarterly blood tests, and my regular out patient “diagnostic and preventative” procedures ate up more than half the lifetime cap on his policy. In all of that time, I have never had an AIDS diagnosis. I have only ever been HIV positive. And every year as my birthday rolls around, I feel both blessed and guilty for the relatively easy road I have had when it comes to this virus. And each passing year it is hard not to spend this day lost in the memories of people (both living and dead) who were less fortunate than I.
In my last blog post, in defense of PrEP, I openly discussed an encounter where I accidentally put another man at risk. This occurred because I mistook the man as positive. Most of the responses to this blog were positive, but one Facebook response reads as follows:
All the gay men who are advocating for PrEP are already HIV+. That isn't about prevention. It is about HIV+ men wanting HIV- men to bareback with you because you are turned off by the idea of sex with other HIV+ men.
First off, I will be blunt. I cannot knowingly have sex with a negative man without a condom. I simply cannot maintain an erection whether he is on PrEP or not. I sero-sorted the men I dated for nearly a decade and a half, meaning I only dated positive men because of the overwhelming fear of infecting another man. The incident I wrote about occurred because I mistook the man to be positive. Recently, thanks to new studies about transmissions, I have been able to change this fact about myself, and I can engage in sex with negative men with condoms. But I have always been, and remain, much more comfortable having sex with positive men over negative ones.
It truly captures the kind of ignorance and fear that is thrown in my face every day as a positive man. Not a day goes by that I am not reminded that I am on the wrong side of “healthy”. And I have been living with that “stigma” for 24 years.
Thanks to ObamaCare, I do not have to worry about health insurance for a while. But the cost of the drugs that it takes to keep me living “healthily” is in excess of $5,000 per month. My out of pocket expenses for health care has topped $8,000 every year of my adult life, with the most expensive year costing me nearly $38,000. PrEP is not cheap, but it costs much less than maintaining my health as a positive man.
So, to the man, and those like him, that think that I am using my platform for PrEP as a way to bed negative men, I say, you are an idiot. There is a very strong reason why there are many positive men in favor of PrEP. Positive men know what it is to be positive. We know what it is to be feared. We know what it is to have to stay on top of each and every new medical advance just to live a semi-normal life, and we know what it is to go bankrupt to stay healthy. We also know how fast and easy a seemingly random choice (intentional, unintentional, or intoxicated) can change your life forever. We know choices are your best defense. We advocate for a wide range of preventative options for your protection so you will never have to learn the stigma and fear we know, and then live out the balance of your life with it’s bounds.