Stories of Hope

I never even told my mother I was gay and she didn’t know. While lying there in what I perceived to be my deathbed, I thought that my mother would abandon me. She never did.

I was a graduating senior at Prairie View A&M University in Texas and on my spring break visiting my mother when I was diagnosed with AIDS and end-stage renal failure. When I arrived home, I was greeted very warmly by my mom.  Her retirement party was that night. Over the weekend, my health continued to deteriorate. On March 10, 2008, the anniversary of my father’s passing four years prior, my mom insisted on taking me to the emergency room. She drove us to the hospital, where I was born and where my father passed away. I was beyond terrified.

After check-in and having my vitals taken, the nurses began taking several laboratory tests. Within 24 hours, I was checked into the hospital and had an AV fistula implanted into my heart. I was diagnosed with end-stage renal failure. The nephrologist assigned to me was shrewd and proclaimed that my kidneys were “gone” and I would never urinate again.

The same general physician I saw previously in the presence of my mother informed me about my AIDS diagnosis, and thereby outed me — twice.  I will never forget what that physician said to me.

“Wake up! It’s AIDS. Are you surprised?”

Miraculously, during one of my dialysis treatments over that summer, my kidneys regained their proper function.  I was able to return to my undergraduate studies.

In May 2009, I graduated cum laude from Prairie View A&M University with Bachelor of Business Administration in Management degree.  I also graduated cum laude from Texas A&M University – Commerce with a Master of Science in Technology Management degree.

I’m Sean Strub, and in 1994 I founded POZ magazine with the tagline “Help, Hope, and HIV.”

Hope was important.  At the time, not many people believed there would be many survivors, if any, of the epidemic.  And while the media context at the time was AIDS was inevitably fatal, dread disease, terminal illness, no treatment, no cure, no survivors – I was living in a world full of people with HIV who were living vibrant lives, raising their children, making art, going to school, creating businesses, engaging in activism, going to demonstrations, caring for others, despite this tremendous health challenge that was likely and only did kill most of us.

It was important to show the example of people who were leading vibrant and full lives, despite that challenge – especially for people who were culturally and geographically isolated and didn’t have the option of going to an ACT UP meeting in the Village and being surrounded by that kind of support.  

At the time when we started the magazine, we had a number of, sort of, rules. When we had science coverage, we made sure that a person with HIV was quoted in the first few paragraphs of the story.  We didn’t want to hear just from scientists or just from the clinicians; we always wanted to hear from people with HIV themselves.  

We sought to make stars.  We put people on the cover no one had ever heard of.  They weren’t famous; that’s not why we put them on the cover.  They were doing really important and inspiring work, and we wanted to bring attention to what it was that they were doing.

The idea of the magazine was to strengthen our community, foster empowerment, resistance and pride, and give that example of survival and hope to people anywhere who read the magazine.

Our first issue featured Ty Ross on the cover.  Ty was a very attractive young man who was the grandson of famously conservative presidential candidate Barry Goldwater.  He was interviewed by Kevin Sessums, who at the time was the top celebrity interviewer for Vanity Fair magazine.  Hollywood photographer Greg Gorman took really great pictures of Ty, added to the appeal.

Frank Rich was a columnist for the New York Times, and he called POZ “easily as plush as Vanity Fair, and against all odds, the only new magazine of the year that leaves me looking forward to the next issue.”

We were criticized, even for the fact that we had high production values and glossy paper and beautiful photography.  As if somehow people with AIDS had to have a publication on newsprint with typos, or something.  I never understood that criticism.  At the time, the publisher of The Advocate said to a trade publication he didn’t understand why anyone would ever advertise in a magazine with such a grim topic.

In those first years, every month, we ran my lab work — the actual scan of the report from NetPath or Quest or whatever the lab was — and explained each of the different things on it.  And then we had different physicians and experts comment on my health.

One of my very favorite ones was when my CD-4 count was down, I think, to 1 and my viral load was in the millions.  And one doctor looked at my health records and said:  Sean is in very serious shape, he is at great risk at becoming ill, and what he needs to do immediately is A, B and C.

In the next paragraph was a different doctor, also an expert, and said:  Sean’s situation is dire, but what he shouldn’t do is A, B or C.  He should be doing X, Y and Z.

And it wasn’t about trying to call out one doctor or the other.  That was the reality at the time is that people were getting conflicting advice even from people who were expert and well-meaning, because so little was known about how best to treat the disease and the opportunistic infections that arose from it.

We were also very focused on the Clinton administration and their failure to support syringe exchange programs when the science was utterly clear that they were incredibly effective at reducing HIV transmission.  And that became a campaign that went on for several years.  And we were a thorn in their side.

Bob Hattoy, who worked in the White House, used to surreptitiously report to me what people were saying at meetings when the topic came up or things about the epidemic came up.

A year or so after we started, my health had really plummeted.  I had spent the money I had saved in my life; I’d sold my insurance policies to fund the magazine.  My CD-4 count was almost non-existent, I had pulmonary Kaposi’s sarcoma in my lungs, and I had lesions all over my body.  But we carried on, and we found a path through to a point where POZ became the most trusted information source for people with HIV.  

In survey after survey, done by us or by government agencies or even the pharmaceutical industry, found that people with HIV trusted POZ more than they trusted even their own personal physicians or any non-profit organization.  The only category of information source that they trusted more were their personal friends who were also living with HIV. 

In 2004, I sold the magazine and it found a new life online with a much broader audience around the world.

I’ve done a lot of things in the epidemic.  I was involved with ACT-UP, co-chaired the fundraising committee, raised a lot of money.  I was at demonstrations at St. Patrick’s Cathedral, climbing on the top of Jesse Helms’ house, putting a giant condom over it, working with the People With AIDS Coalition in the early ‘80s even before ACT UP was around, running for Congress as the first openly HIV-positive person to do so in 1990.  I produced David Drake’s hit play The Night Larry Kramer Kissed Me, and in 2014, I published a memoir called Body Counts.

But POZ holds a very special place in my heart, because of what it came to mean to so many millions of people living with HIV and affected by HIV in the U.S. and around the world.  And I’m proud that it endures and our community endures.