I choose life over death with HIV, and I owe it to you

I take one pill, once a day, provided to me by the state of Pennsylvania. Without this medication, and without the prior and ongoing work of pharmaceutical companies and HIV/AIDS activists, or the current and future dedication of myself to my own health, I would face, at the most, about 10 more years of life.

This is part of a series of essays called “Being [Blank] in Philly,” about what it’s like to be you in Philadelphia. In an attempt to discuss the issues that make us different from each other in a respectful and productive way, all readers are invited to submit an essay to speakeasy@newsworks.org to contribute to the series.

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“You are HIV-positive.”

I heard this in person after a several-hours-long wind-up that had me dreading this was exactly what I was going to hear that morning.

When I got up that day, I walked to a local pharmacy to pick up a newspaper and, while I was waiting in line, I got a phone call. It was my physician’s assistant asking me to come in for an impromptu appointment to talk about a recent HIV test.

Every time previously that I had been tested, my results were given to me a week later over the telephone. “You are fine!” was the affirmation I always got — after a week of near-irrational anxiety and worry. This time, however, they would only tell me my results in person. Sensing the worst, I yelled at my physician’s assistant through my iPhone.

“WHY do I have to come in this time?” I shrilly and pointedly demanded, as though being combative and knowing right then what they wanted me to hear in person was somehow better than coming in to talk.

“Josh,” she said, pausing. “You know why you have to come in.”

Several hours later, after leaving my doctor’s office, I walked to Wendy’s and got a Frostee. I mean, if I have to be an HIV-positive man, I might as well be an HIV-positive man eating ice cream.

February 7, 2012

Philadelphia’s AIDS Activities Coordinating Office says that 20,000 Philadelphians live with HIV or AIDS right now. In 2012, over 700 folks in Philly were newly diagnosed. Of these, 559 were male, 194 were female, over 500 were black, over 100 were latino, nearly 20 were Asian or mixed race, and over 100 newcomers to HIV were white. A little over 40 percent of all of these folks were men who have sex with other men.

I’m one of these numbers. If we’re talking racial breakdown, I’m number 14 or so that year. If we’re talking gender breakdown, I’m somewhere around 50 or 60. Regardless of how you look at the numbers, though, I’m just one of over 700 Philadelphians diagnosed in 2012. Today, I’m just one of that cumulative total of 20,000. In a city of 1.5 million, this represents just over 1 percent of the total population. So much for being a precious snowflake!

Yet, there is something special about living with HIV/AIDS. That is, unlike the vast majority of human beings on planet Earth, I have a virus living inside of me that, if left untreated, will surely kill me. Still, thanks to a forward-thinking, progressive healthcare system hard won by activists here in Philadelphia and, by extension, in Harrisburg, I receive all my HIV-related medicines and care at no cost to me. (Cost depends on the recipient’s income, but the limit is rather high to ensure access to treatment.)  

This state program, called the Special Pharmaceutical Benefits Program (SPBP) and funded in large part by the federal government, enables me to do things like live out a normal lifespan so I can create a family, have a typical daily quality of life that enables me to work for a living and, of course, eat ice cream. I should mention, too, that because of these healthcare services and medications, I am, generally and statistically speaking, unable to transmit HIV to others.

Major progress, for medicine and for myself 

Current research suggests that those who take modern HIV medicines, folks like me, pose little to almost no risk of transmitting HIV to others (science can’t prove a negative, after all). This is very good news; it means that if I snag a husband (unlikely, but still plausible) and he’s HIV-negative, there’s little to no risk of him acquiring the virus through our physical encounters. This is because I maintain an undetectable viral load.

An “undetectable viral load” simply means that when an HIV-positive person’s blood is tested, scientists can find almost no copies of HIV floating in that person’s blood. This has serious ramifications for HIV transmission; after all, HIV is a virus requiring blood-to-blood contact for acquisition either through blood directly or through plasma-based bodily fluids like semen or breast milk.  (For the record, saliva does not contain HIV which makes laws about an HIV-positive person’s spit inexplicable, unless we’re just saying “Ew, HIV-positive people!”).

Anyway, logically, if there are almost no copies of HIV floating around in my blood, there’s very little in my bodily fluids, too — though studies indicate that an undetectable viral load in the blood does not indicate that HIV is entirely absent from other blood-based bodily fluids. However, the Centers for Disease Control and Prevention says that in one study of serodiscordant couples (where one person is HIV-positive and the other is HIV-negative) “no transmissions occurred among couples” where the HIV-positive partner was on modern medications and maintained at or near an undetectable viral load.

Basically, thanks to the one pill I take daily, I have fewer than 20 copies of HIV per milliliter of blood tested. While that sort of sounds disconcerting (after all, “fewer than 20” is not “zero”), I should note that, at my diagnosis, my viral load was around 250 thousand copies of HIV per milliliter of blood tested.

If not for my medication, I wouldn’t just be at risk of transmitting HIV to my sexual partners — I would be dead or dying. You see, HIV is beautiful in its horrifically simplistic life cycle. All it does, if untreated, is tell cells in the immune system to stop replicating themselves and to produce HIV instead. This means that, without treatment, slowly but surely, my immune system would begin to fail. A lot of folks don’t know that HIV itself doesn’t kill anyone; instead, by destroying the body’s immune system, it gradually leaves infected folks unable to fight off things like pneumonia and influenza. These opportunistic infections eventually kill people.

A dedication to life and possibility

I take one pill, once a day, provided to me by the state of Pennsylvania.  Like the vast majority of people who take this particular medicine (and others like it), I experience no side effects, either.  Most importantly, because of the SPBP and my medication, I am looking at another 40 to 50 years of work, family, and life, according to my doctor.  Without this medication, and without the prior and ongoing research of pharmaceutical companies, the prior and ongoing work of HIV/AIDS activists, or the current and future dedication of myself to my own health, I would face, at the most, about 10 more years of life.  

In fact, it is likely that without my medication, without all of these things I’ve mentioned, I would not be writing this today.  Instead, knowing myself, I would likely be numbing myself with drugs, alcohol, and sex to avoid the fatalistic decade ahead. Yet, because I have scores of years in front of me — thanks to the hard work of doctors, researchers, politicians, bureaucrats, activists, and those who died before me when the virus truly was, for all intents and purposes, a death sentence — I now see little point in disengaging from life. Rather, I view every day as a new possibility for adventure, to build a foundation, upon which I may rest a future family — and I am busy living my life.

This Thursday, April 24, is Dining Out for Life. Started in 1990 by an ActionAIDS volunteer in 1990 here in Philadelphia, the event has grown to a national scale, with 3,000 participating restaurants donating proceeds to HIV/AIDS-related research and charities. Folks may visit participating restaurants, break bread with their friends, and enjoy one of the primary ways human beings celebrate living: through eating a life-sustaining meal together. The only cost to participate is the cost of a typical dinner out.

So, as well as bestowing codified individual liberty to the citizens of this nation, Philadelphia has given the world one of the easiest and most effective ways to support the option of life over death.  

Thank you

Every year, $6 million is raised for HIV/AIDS organizations nationwide thanks to this program. And, because of the culture of celebration around it, the choice of life over death, and the continuous work and care and generosity of all citizens, I am able to work hard toward and, dare I say, dream about my future.

So, thank you. Thank you, everyone, both living and dead, for your work and contributions. Thank you for your dedication. And above all else, thank you for allowing me to live instead of die.

I’ll see you at dinner. I’ll be the guy happily eating ice cream.