Positively Aware Turns Twenty
A former editor remembers our journey
by Bob Hultz
Days of darkness, rays of light
If you’ve ever lost your cell phone, along with it probably went your friends’ phone numbers stored in memory. If your computer ever crashed, you know the chaos that follows when a virus hits your hard drive. All your data, photos, e-mail and contacts: gone.
Twenty years ago, a virus was erasing not just the phone numbers of our friends; it was erasing their lives. Lovers, intimate acquaintances, family members and friends were becoming critically ill and dying in rapid succession, one after the other, year after year.
When the darkness of HIV/AIDS first slithered across this country like some monster from an old sci-fi movie, many of us in Chicago responded by creating a new light. Together, we formed Test Positive Aware Network (TPAN) and Positively Aware (PA).
This article is about that decade and that time: when we changed lives with condoms, drug trials, pill timers, the stages of death and dying and the states of defiance and hope.
In an information vacuum, we gathered resources and learned from one another. We debated new cure quests: pharmaceutical drugs and Chinese herbs, bone-marrow transplants and blood swaps, egg yolks and acupuncture, drinking urine and blowing ozone gas up your ass.
We wanted to know everything about anything that might stop the devastating sickness and death. Because of our efforts, we were no longer isolated in fear and ignorance. And we carried that message to others nationwide: You are not alone.
In our beginning
In the summer of 1987, when TPA Network was founded, Chicago had no open support group for people concerned about HIV and no local printed information concerning HIV and AIDS.
“Virtually fatal” and “incurable” was how U.S. Surgeon General, C. Everett Koop, described AIDS during his address to the first President’s Commission on AIDS in September of 1987.1 Another year would pass before 107 million copies of Dr. Koop’s booklet, Understanding AIDS, would be distributed as the government’s first mass-education campaign on the subject.
Like most of the rest of the country, those of us in Chicago relied heavily on resources produced regularly in the three cities hit hardest by the epidemic:
New York City —Treatment Issues from the Gay Men’s Health Crisis (GMHC); materials from Body Positive; and publications from the American Foundation for AIDS Research (AmFAR).
San Francisco—Project Inform’s PI Perspective; John James’ AIDS Treatment News; and the Bulletin of Experimental Treatments for AIDS (BETA) from the San Francisco AIDS Foundation.
Los Angeles—The Being Alive Newsletter and numerous landmark publications of AIDS Project Los Angeles (APLA).
To help meet the Midwest’s need for support and information about HIV/AIDS, Chicago activist Chris Clason founded Test Positive Aware Network (TPAN), holding its first meeting on June 19, 1987.
Three months later, Chris wrote and produced the first issue of TPA News, which eventually grew to become Positively Aware (PA). Monthly, for more than two years, he cranked out TPA News on an Atari game computer and a dot matrix printer from his apartment on North Malden street.
In July of 1989, production of TPA News moved from Chris’ apartment to mine. As president of TPAN’s second Board of Directors, I volunteered to handle the newsletter’s writing, editing and production, an honor I held for 48 monthly issues.
Before I take you further into the history of our early years, take a look at the accompanying timeline to remind yourself about the decade when AIDS and HIV were first recognized and the years when TPAN and its publications began. [See sidebar.]
Guiding principles
Working with other dedicated volunteers and contributors, we steadily achieved higher levels of credibility and authority as an organization and as a publication. Our Editorial Committee helped maintain standards for balance and accuracy.
Experience in broadcasting and media gave me the skills to take on writing, editing and formatting the publication. An HIV-positive status and the loss of dozens of intimate friends to AIDS gave me drive and determination.
Type-setting and new page layouts made each issue more user-friendly. Contribution of my custom charts, graphics, and photographs helped to distinguish our monthly from all other monthly HIV/AIDS publications of the time.
The combined result was a unique, credible news source that was enjoyable to read, authoritative and yet accessible to readers with a wide range of education. We worked hard to provide a publication that was true to our founder’s goals, a tradition that continues twenty years later.
Month after month, we provided: informative reports and timely commentary; news of pharmaceutical treatments and complementary therapies; guest views and letters; listings of HIV/AIDS organizations, services and clinical trials; updates on legal and estate issues; “AIDS Basics” and glossaries; prevention information; and details of TPAN support meetings and social functions.
Above all, we championed our organization’s theme: Committed to Living. We were determined to be a reliable, unbiased source of life-saving information and support without advocating for particular courses of action.
In the first years of our publishing, most of our funding was provided by mail subscriptions and grants. Our first major grant came from the Chicago Department of Public Health (CDPH). Foundation awards and fundraisers were the other source of continuing financial support for PA and TPAN. Our most significant continuing fundraising was conducted by the volunteer organization Bringing Our Hearts Together, which eventually became the Hearts Foundation.
ACT UP led demonstrations [against U.S. HSS Secretary Lewis Sullivan] at the opening of the 1990 IAC, protesting government inaction on AIDS and U.S. immigration policies restricting entry of HIV-positive people into the United States. Photo by Bob Hultz.Early publishing milestones
In April of 1990, we began printing our monthly on a commercial web printing press, allowing us to print thousands of newsletters with color accents at a fraction of the cost of photocopying or offset printing. The lead story in that issue concerned aerosolized pentamidine, the first treatment approved to prevent pneumocystis carinii pneumonia (PCP), the leading killer of people with AIDS.2
November, 1990, marked the first issue of our news magazine bearing the new Positively Aware name and banner, created by Chicago AIDS activist Drew Badanish.
Three months later, we released our first “spin off” publication: a stand-alone 104-page Directory of Chicago HIV/AIDS Clinical Trials. Based on the consistently authoritative listings of HIV/AIDS clinical trials in our monthly magazine, TPAN obtained funding and source material for the project from AmFAR, the American Foundation for AIDS Research.
Sections were included in English and Spanish and the entire publication was made available on disc for customization and distribution by other HIV/AIDS organizations. PA continues to be a source of information about clinical trials locally and nationwide.
Another breakthrough publication was released the next year when TPAN published the first Chicago Area HIV/AIDS Services Directory, a 62-page book funded by the CDPH.
By this time we had established a tradition of providing our readers first-hand reports and photographs from the annual International AIDS Conference (IAC). I and other reporters from Positively Aware covered the IAC beginning with San Francisco in 1990; these first-person reports continue today.
PA goes national
In the spring of 1992, TPAN secured funding to expand Positively Aware from a local to a national publication. Working closely with Executive Director Steve Wakefield, I developed the concept and we successfully applied for a three-year grant from Burroughs Wellcome, manufacturer of AZT.
The award was controversial because critics feared we would become a mouthpiece for the drug industry. To the contrary, we vowed to provide critically-needed, accurate, unbiased information to our readers—a promise PA upholds today.
The funding allowed us to acquire computers and production tools, furnish offices and hire staff to carry on the work that had been handled for years by me and other volunteers. Assistant editor Cesar Chavez, production editor Dave Thomas, writer Scott Williams, distribution coordinator Jeff Berry and other paid professional staff worked with me as Senior Editor. Together with dozens of volunteers and contributors, we achieved levels of production, reporting and circulation undreamed of just a few years earlier.
Our press run for Positively Aware expanded to nearly a million copies annually. Beginning in June of 1992, in addition to our monthly local edition, every three months we distributed more than 200,000 copies of PA to 245 HIV/AIDS organizations in more than 190 cities.
Additional to publishing “generic” versions without any city-based details, our staff worked with writers at community-based organizations to customize these quarterly editions for ten “second tier” cities. These ranked just behind the “first tier” cities of New York, Los Angeles and San Francisco as having the highest numbers of reported HIV/AIDS cases.
As the magazine developed in size and sophistication, our monthly mailing list grew from a few hundred in 1988 to more than 3,500 by 1993. Today, Positively Aware reaches readers in more than 17 countries and in every state of the union.
Letting go, holding on
Some personal reflections may help add perspective to the magnitude of TPAN’s accomplishments in creating and expanding Positively Aware.
Throughout much of the 1980s, I spent many hours with other TPAN members attending funerals and memorial services of friends and loved ones who perished from AIDS. Even more hours were invested visiting the homes and bedsides of those who were dying of AIDS-related illnesses.
One night, I was sitting quietly in the hospital room of a dying TPAN member who was wheezing for breath, tortured with pain and terrified with panic. I watched as one of his visitors leaned over and whispered in his ear, “Let go. Just let go.”
This message of permission, calm and comfort was intended to communicate that it was all right to stop grasping for air, to relinquish control and pass in peace without regret for the past or fear of his final heartbeat.
Ironically, a day or so later, another visitor stood at my friend’s bedside with a message that defied the doctor’s prognosis, mixing faith, hope and denial.
She leaned over and, with quiet determination, urged him, “Hold on; hold on.” Her message was a valiant effort to impart strength and courage in the presence of certain death.
Such ironic twists constantly punctuated those years as we learned to face our own mortality with hope, realism and resolve.
More than a motto
Under the banner Committed to Living, we formed an organization to encourage, sustain and inform others in the face of an unprecedented, unknown disease that was rapidly killing us.
Some died within months or weeks of their diagnosis of HIV-related pneumonia, spinal meningitis or PML brain tumors. Many were disfigured from Kaposi’s sarcoma lesions on emaciated bodies that had previously been the envy of others in gyms, bars and clubs. Molluscum looked like clumps of cottage cheese on the gaunt faces of some. Others used canes to walk, having lost most of their eyesight to CMV (cytomegalovirus) retinitis or because their limbs burned incessantly from peripheral neuropathy.
In addition to the many men and women I met through TPAN, dozens and dozens of my intimate and close friends have passed away from AIDS over the years. My first lover, Cliff Counts, died of PCP in San Francisco in 1983. My second life-partner, Tony Kiser, died of AIDS in 1993. He served with me on the Board of TPAN, supported my work at Positively Aware, and together, we attended fellowship meetings from the first months of the group.
In this unique support setting, we all learned how and when to “let go” with grace, to choose our battles carefully and fight them courageously. At TPAN and through the pages of Positively Aware, we studied the essentials of making a will, applying for disability, obtaining food and housing or enrolling in hospice.
We gathered each week to face unpleasant realities together. We calculated costs of cremation vs. burial. We took notes as Hemlock Society speakers explained how to take our own lives if we chose to let go under unbearable waves of pain.
TPAN member Danny Sotomayor, a Chicago artist and AIDS activist, helped keep our organization and publications current on HIV/AIDS political and prevention issues. He is shown at right at a 1990 local protest featuring the Gran Fury advertising campaign, “Kissing Doesn’t Kill, Greed and Indifference Do” see: http://creativetime.org/archive/?p=84
Drive and determination
At the same time, we embraced one another, dried each other’s tears, found ways to laugh, learned to forget and remember, and encouraged one another. In countless ways on countless days we told one another to “Hold on.”
We were bound together by a hope that one day there would be better treatments or a cure—perhaps before our time was over. We were buoyed by each other’s courage in the face of discrimination and rejection from society, employers, landlords and our own families.
Together we learned to meditate, exercise, eat better, try complementary and alternative therapies, take our meds and switch when they no longer worked. We donated our blood to drug trials so that we and others might benefit from our misfortune. We enjoyed yoga and massages from Hannah Hedrick and spiritual guidance from Rev. Brian Hastings.
We attended picnics and vigils. We biked, walked and marched for AIDS. We studied Conversations with God, The Road Less Traveled and the Twelve Steps of AA. We learned how to simultaneously let go and to hold on, to fight as if we were going to live even though the odds then were against us.
Eventually, millions of readers around the country and around the world were able to share our determination to face the worst of HIV’s realities with an affirmative spirit.
We were inspired and rewarded when letters of appreciation poured in from readers at hospitals, schools, churches, prisons, substance-abuse treatment centers, and hospice facilities. Mothers and fathers, sisters and brothers, friends and lovers learned from us ways to hold on, ways to let go, and how to choose wisely between those seemingly opposite courses.
Changing lives then and now
The world is a better place and I am a better man for my work with Positively Aware and the members of TPAN.
Today, at age 60, I’ve lived far beyond my expectations during those early days of TPAN. I’m determined to hold on longer as a tribute to those I’ve loved and lost and as encouragement to others I’ve yet to meet.
I represent hope to those who test positive. And I try to bolster others with ways to stay negative while enjoying sex and life.
If someday I decide to let go, I can do so with the peace of having made a difference through my contributions to Positively Aware and its inestimable gifts to readers around the world.
I often wonder why I have survived more than two decades with HIV when so many millions of others have not. I believe that one reason is to be here today, bearing witness to you from all those, living and dead, who were a part of the early days at TPAN and Positively Aware. From me and them I say to you, “hold on.”
Bob Hultz was Senior Editor of TPA News and Positively Aware from 1989 to 1993. Bob now lives in Los Angeles and may be contacted at bobhultz@aol.com.
Referenced footnotes available online at www.positivelyaware.com.
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[1] Address by C Everett Koop, MD, ScD, Surgeon General of the U.S. Public Health Service, Presented to the President’s Commission on AIDS, Washington, DC, September 9, 1987
[2] MMWR Weekly (1981) “Kaposi's Sarcoma and Pneumocystis Pneumonia among Homosexual Men - New York City and California” , July 4,30 (4); 305-308
[3] CDC (1982) “Kaposi's Sarcoma (KS), Pneumocystis Carinii Pneumonia (PCP), and Other Opportunistic Infections: Cases Reported to CDC as of July 8, 1982”
[4] MMWR Weekly (1982) “Diffuse, Undifferentiated Non-Hodgkins Lymphoma among Homosexual Males, United States”, June 4,31(21); 277-9
[5] MMWR Weekly (1982) “Current Trends Update on Acquired Immune Deficiency Syndrome (AIDS) United States”, September 24, 31(37); 507-508, 513-514,
[6] Barre-Sinoussi F. Montagnier L. et al, (1983), “Isolation of a T-Lymphotropic retrovirus from a patient at risk for Acquired Immune Deficiency Syndrome (AIDS)”, Science, May 20
[7] Marx J.L. (1984), 'Strong new candidate for AIDS agent', Science, May 4
[8] 'Pear R. (1985), 'AIDS blood test to be available in 2 to 6 weeks', the New York Times, March 3
[9] Marx J.L. (1985), “A virus by any other name?”, Science, March 22
[10] Coffin J., et al, (1986) 'What to call the AIDS virus?', (Letter), Nature, 321:10
[11] Krieger N. and Appleman R. (1986), 'The politics of AIDS', Frontline Pamphlets, the Institute for Social and Economic Studies
[12] Bureau of Hygiene & Tropical Diseases (1986) 'AIDS newsletter' Issue Volume 2 Issue 1 January 15
