May #154 : Mission Impozsible - by Regan Hofmann

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Table of Contents
 

Mission Impozsible

Infected & Affected

POZ’s (Abbreviated) Encyclopedia of AIDS

POZ at 15

Viral Vernacular

POZ & Effect

Your Brighter Future Starts Here










The Wish of All Wishes

Imagine a Brighter Future

Editor's Letter-May 2009

Your Feedback-May 2009



 
Most Popular Lessons

The HIV Life Cycle

Shingles

Herpes Simplex Virus

Syphilis & Neurosyphilis

Treatments for Opportunistic Infections (OIs)

What is AIDS & HIV?

Hepatitis & HIV


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May 2009


Mission Impozsible

by Regan Hofmann

In honor of our 15th anniversary, we caught up with POZ’s founder, Sean Strub, as he looks back at the magazine’s origin—and ahead to his next move.

What inspired you to start POZ in 1994?
There were three reasons: (1) to disseminate information [about HIV/AIDS], as it was apparent that those who were better informed were living longer lives and had a better quality of life, (2) to expand the conversational ballpark, so those [living] with the disease as well as those affected by the disease—like families, coworkers, friends and loved ones—could get information that would save lives and create community, and (3) to give back to people with HIV the possibility of survival, which had been taken from us by mainstream media that always referred to AIDS as an inevitably fatal, dreaded disease [that left] no survivors. Language is important, as it influences how our body responds. Fear, anger or anxiety can provoke cold feet, raise the hair on the back of our necks and cause a sinking feeling in the pit of our stomachs. Our immune system must work in a similar manner; if assaulted with “death sentence” messages, how can it respond as effectively as it would if given messages that offer hope and the possibility of survival?

If you were to identify the key emotions you felt when launching the magazine, what would they be?

President Obama refers to the “urgency of now,” and that appropriately defines the aura surrounding the birth of POZ. People were dying, and many of those deaths could have been prevented if only they had the information POZ could provide. The entire group of people involved with launching the magazine (it was not a singular effort, to be sure) knew we were part of a greater mission. We were driven by anger and desperation, but also by hope and inspiration and the tremendous satisfaction we found in serving the community. It also was about documenting the lives of so many people I loved and taking pride in how valiantly and courageously the community had responded to the epidemic. Despite the pain and loss and death that were becoming part of everyday life, there also was a lot of joy, excitement and vital, vibrant living we showcased in POZ. From the first issue, we had a sense of bearing witness to something important and life affirming, even in the face of a cultural, political and media environment that had written us off.

How did you come to the decision, when you believed you were dying, to spend your days helping others versus nurturing yourself or pursuing your “bucket list”?
It wasn’t a decision that I ever consciously made. As a preteen, I found purpose in social change work, and that purpose and satisfaction have only grown over time. When I was very ill and thought I did not have much longer to live, I found tremendous peace knowing that through POZ I was able to contribute something of value to the community. Creating POZ was nurturing myself and pursuing my bucket list. It was what I wanted to do; it was not a sacrifice.

How did you fund the magazine’s start-up?
In roughly equal measure, from my savings and from the viatication of several life insurance policies I had. Later, I sold my house and raised some money (mostly from friends) in order to invest more in the magazine.

Did people think you were crazy to have a business model in which the content was about—and sometimes criticized—the very clients who paid to advertise in your magazine?
That may sound crazy to others, but not to me. We sought to be fair in the pages of POZ, not curry favor or take gratuitous slaps at the pharmaceutical companies. We wanted them to advertise in the magazine because they had no choice if they wanted to reach this “market,” not because they liked us or approved of what we published.

What was the social climate in which you started the magazine?
It was a time of tremendous social anxiety; few people thought anyone with AIDS would survive. The political environment had changed for the better as Bill Clinton took office in early 1993, but by the time the first issue of POZ came off press we were already disappointed in the failure of the Clinton administration’s leadership and it would become a focus of criticism. That [stance] was not popular with a lot of the GLBT community leadership that was awestruck over having someone in the White House who could say the words “gay” and “lesbian” and feel their pain. But we were dying; the epidemic wasn’t just about gay men; and we needed a lot more than symbolism and Hallmark-like affirmations. Clinton’s post-presidency AIDS work, which is admirable, on some level is his penance for allowing so many people to die while he was in office. His failure to fund needle exchange programs is one example of what was an obvious unwillingness to spend political capital in order to combat the epidemic.

When you launched, the media asked why we needed a magazine for people who were dying. How did that make you feel, and how did you respond?
Generally we had a sense of humor about it, but there were moments that were especially disappointing, like when the then-publisher of The Advocate told a publishing industry trade publication that he didn’t understand why anyone would buy or advertise in such a “grim” magazine. That hurt. But mostly the reaction of the press just proved the necessity for POZ.

Was there a moment when you knew you’d made the right decision to start the magazine?
Every time someone with HIV tells me what the magazine has meant to him or her. I started hearing that with the first issue, and I still hear it today.

Name an incident that made you particularly proud of POZ.

Several times, especially in the early years, when some pharmaceutical companies threatened to discontinue advertising, we always stood strong. I must have said to the staff a thousand times that it was more important for us to be truthful and honest about our convictions than it was for us to publish the magazine. Shutting the magazine down was always an option and one that was preferable to allowing pharma—or anyone—to dictate our coverage. For example, when we first started writing about certain side effects, we were heavily pressured by industry and even some nonprofit agencies. They told us these things weren’t proven and we couldn’t write about them. But we did, and in time, virtually all parties came to understand that the collective wisdom and experience of people with HIV—as reflected in the pages of POZ—needed to be listened to; we were/are the canaries in the pharmaceutical coal mine, often discovering side effects long before they hit the radar screens of the drug development and regulatory folks.

I’ve been especially proud of the tradition of sex positivity, even in the face of a culture (and many in the gay community) that believed anyone with HIV should shut down sexually.

If POZ were a person you had to describe to a friend, what would you say?
POZ is full of vitality and life, utterly trustworthy and serious about its mission, while maintaining a sense of humor and healthy skepticism, never forgetting that the history of the epidemic is littered with now-discredited “conventional wisdoms.” POZ is also sexy, great-looking, and it transcends gender.
 
Any regrets about your time at POZ? Anything you’d have done differently?

In general, no, but I have three specific editorial regrets. One was how I stupidly misquoted, in my S.O.S. column, something my friend Michelangelo Signorile had written in The New York Times. Even though we corrected it in the next issue, it hurt our credibility at a sensitive time in the magazine’s development. The second was our profile on Lisa Tiger; in retrospect, I wish we had covered her story in more depth (even though she never complained about the article). And the third was the decision—which I made—to photograph barebacking advocate Tony Valenzuela naked on a horse for the cover of our February 1999 issue. The article on barebacking was important, and I remain proud of our pioneering courage of the issue, but in retrospect the cover photo gave fodder to critics who sought to dismiss or marginalize what we had to say about a profoundly important phenomenon, the understanding of which is vital if we are to stem the spread of the epidemic.

Did you achieve your initial mission?

No. We wanted to end the epidemic and make the magazine unnecessary.

What made you decide to sell the magazine in 2004?
I was burned out and could no longer provide the financial resources the company needed to continue to grow. The death of Stephen Gendin was also a factor. At the time of Stephen’s death I said, “Continued AIDS activism, in the absence of Stephen’s integrity, excruciating honesty and deep drive for meaning, at the moment, feels impossible.” That was true, for me, and I needed to take a break and tend to my own health.
 
Can you tell me about the company that bought POZ and how you felt about handing your brainchild over to strangers?

We talked to dozens of potential buyers or investors, including major medical education agencies, health publishers, gay publishers and others. But what I and our investors liked about CDM Publishing initially was its business model. CDM’s success was predicated on maintaining the trust of people with HIV. It simply will not work if the community stops trusting POZ. Jeremy Grayzel, the principal in the firm who is now the magazine’s CEO, was not a stranger by the time of the sale as we had been negotiating and working with him for more than a year, including several periods when the deal was dead. He demonstrated his integrity and commitment, to me and others at the magazine, so the actual sale was more comforting than traumatic.

What was your biggest fear in selling POZ?
Loss of credibility between POZ and the people with HIV we sought to serve. I knew POZ could not maintain the same activist voice I enabled; that was a luxury of having an owner/activist, something not easily found. But it was important to me that the magazine continue to serve people with HIV and be trusted by them, even if it wasn’t possible for it to be quite as “in your face” (and in the streets) as it was under my leadership.

Is the relationship between POZ and NAPWA an example of how a nonprofit organization and a company embracing social entrepreneurship can work together for the greater good?
Prior to the AIDS epidemic hijacking my life, I was active in the corporate social responsibility movement. I personally have straddled a sometimes-confusing line between entrepreneur and activist. The POZ/NAPWA relationship is one that has the potential to be of tremendous benefit to people with AIDS; The Denver Principles Project is the first example of that. The agreement essentially enables NAPWA to leverage POZ’s technology and data resources on behalf of the broader movement, and that is a great thing. So, yes, I am enthusiastic about the partnership.

Given how the epidemic has evolved greatly since you founded the magazine, do you think POZ has represented that change on its pages and on its website?
I think we have tried hard—and have in many ways been a leader in this regard—but we can and must try much harder. Representing the diversity of the epidemic has been something we were conscious of from the beginning. Our second issue featured an African-American man on the cover—the incomparable Bill T. Jones—and our third featured Cuban-American Pedro Zamora, and our fourth featured a woman, Mary Fisher. But a substantive analysis requires more nuance than simply looking at the gender or skin color of people on the cover or even inside the magazine.

POZ came from and grew out of a white gay male culture, and it is tough to overcome the privilege that clings to that environment. POZ pioneered the concept of an HIV community, helping to teach gay white men about racism and communities of color and others about homophobia, so we have much of which we can be proud. In retrospect, though, we were not angry or assertive enough around how little was being done to prevent HIV in communities of color. The hand-wringing today—including by some government and public health officials—over the seroconversion rates among young African-American men who have sex with men, for example, is disgusting. This is not a surprise. It was obvious what was happening, and the same officials expressing dismay today are the ones who could and should have allocated the necessary resources [to stop the spread of HIV in these communities] 10 and 15 years ago, but did not. In the same vein, I don’t think POZ was as attentive to this as we should have been.

In addition, there rarely is an issue of the magazine today—or in years past, including when I was actively editing each issue—that cannot or should not be legitimately criticized for its occasional insensitivity or even cluelessness—in nuance or substance—concerning issues of race and class.

You have a new job. Can you tell me about it?
I have accepted a position as president and CEO of Cable Positive, which is the cable television industry’s AIDS organization. It is an exciting opportunity for me, as they have an admirable record of service to the community, creating interesting and worthwhile programs, and it will provide a platform for me to reengage in the epidemic full-time. I will oversee a small staff, several regional chapters and a variety of programs, including a small grant-making program, production of public service announcements and their Youth AIDS Media Institute, which teaches young people how to create multiplatform educational campaigns about sexual health and HIV prevention.

Do you have a vision for evolving Cable Positive’s mission?
Yes, but I want to spend time getting to know their programs, staff and the cable industry better before discussing this in detail. What I can say is that the cable industry’s support in the fight against AIDS has been truly admirable and, quite frankly, largely unrecognized. Part of what I hope to accomplish will be to inspire other corporate leaders to be as responsive and engaged in the epidemic as the
cable industry has been.

You are one of the most influential AIDS activists alive today. What advice can you share?
There are so many supposed truths that were absolute conventional wisdoms in their time that subsequently were discarded. A healthy dose of skepticism is a necessary part of any treatment strategy. If I had followed the treatment strategy that I was told I “should” follow, I would not be alive today. Should is a word, when applied to anything about the epidemic, that I advise be taken with a grain of salt. There is still much we do not know or understand about prevention, progression and treatment of HIV. Never forget that.

How does it feel to be here today, leading a powerful AIDS organization once again?

I don’t think of it in terms of power, but it is satisfying to be engaged day to day, rather than occasionally speaking or writing from the sidelines about issues that interest me or which I feel deserve attention. It mostly just feels good to be here at all, let alone what I am doing or what organization I am leading.

Do you think Obama is the answer to America’s health care needs, particularly for Americans living with HIV?
No one person is the sole answer, but I do believe President Obama is the best person to lead us to the health care reform that we so urgently need. I donated to his campaign and organized events for his campaign, and my oldest sister ran to be an Obama delegate to the convention. I found my faith lagging in the last years of the Bush regime; it all seemed so hopeless. But Obama inspired me, restored my faith and is at least part of the reason I’ve gotten so involved again.

What can we, as individuals and as a community, do to ensure that all people living with HIV can get access to the best information, care and treatment today?
Making sure that independent sources of information—those that aren’t filtered through some institutional agenda—are protected and enhanced, as well as finding new strategies for making government, industry and service providers accountable to the communities they serve.

What three things would you like to see change around AIDS?
First, I’d like to see more involvement of people with HIV in the development of HIV-related programs and policies and in the governance and staff of service providers; second, a focus on individualized treatment rather than population-based (or “one size fits all”) treatment strategies; and third, greater understanding of AIDS as a social justice issue inextricably linked with racism, sexism, homophobia and poverty, rather than simply a public health “threat.”

What three AIDS-related priorities would you address if you were the new head of the CDC?
I would fund true community-based HIV prevention strategies, including pre- and post-exposure prophylaxes [PrEP and PEP]; fight HIV-related stigma and, specifi-cally, state and local criminalization statutes; and seek to expand the sexual safety zone for people with HIV, respecting and understanding the importance of sexuality as it relates to personal health.

Any final words?
Yes, it is impossible to talk about the history of POZ just in terms of my role. POZ would not have the reputation it has without the contributions of many others, most notably Stephen Gendin, who really should be considered POZ’s cofounder; Walter Armstrong, who was our editor-in-chief for so many years and helped make my passion articulate in print; my sister Megan, who began her AIDS activism as a teenager in 1984; my former partner Xavier Morales, who not only helped launch POZ but also helped create POZ en Español and who cared for me when I was so ill; and many, many others.

Some of the strongest voices that gave POZ its early credibility and integrity are gone now—like David Feinberg, Kiki Mason, LeRoy Whitfield and others—and it is a disservice to reference POZ’s history without noting their contributions and those of hundreds of others. I have been lucky and honored to know and work with them, and I wish they were here to celebrate this milestone.

Search: Sean Strub, Cable Positive, NAPWA, Regan Hofmann


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