As Positively Aware celebrates 30 years, I reflect on the myriad ways this magazine has affected not only the lives of people living with HIV/AIDS but also my life as an HIV-negative ally.
In 1990, I began volunteering at Open Hand Chicago, a meals delivery program for people living with HIV. After three weeks, coordinators asked me to make a long South Side route my regular route. I loved it! Pretty soon I had a delightful young man as my driver and together we spent Friday nights delivering food to mostly families of color. Many of the caregivers looked surprised to see someone who looked like them. When some of them started to ask questions about the availability of various services, I hit upon the idea of giving them Positively Aware—in a plain white envelope so as not to out anyone’s status. It was seldom mentioned but never was it refused. I repeatedly heard that Black and Brown people abandoned their own, but here were folk invisible to most, going about the daily business of taking care of a loved one, oftentimes alone. It was both beautiful and heartbreaking to behold.
The magazine facilitated self-empowerment so that the women living with HIV/AIDS I worked with could better navigate safer sex, working in partnership with their medical providers, use safely, and generally take better care of themselves even under difficult circumstances.
As time progressed and I got a better handle on my job, first as a case manager at Chicago Women’s AIDS Project and then as a health educator at New York’s Gay Men’s Health Crisis (now GMHC), PA became an indispensable resource for my clients. With first-rate reporters and writers, issues affecting the everyday lives of my clients were taken out of the closet and aired in public, so the fear, ignorance, and stigma could dissipate.
They got word about new and ongoing clinical trials that were still enrolling, such as ACTG 175, a landmark study that made special effort to enroll at least 15% women and had women-related sub-studies. They learned about informed consent so they wouldn’t be blindly signing up. They also read the debate over whether or not low-dose oral alpha interferon deserved a proper drug trial since there were anecdotal reports that it worked in Black people, but not so much in others. Also, both providers and clients found the report-back from major HIV/AIDS conferences very helpful.
One enduring feature of the magazine is the HIV Drug Guide. It is a functional marvel covering HIV drugs, side effects, and drug interactions. Everyone I know, both client and provider, has come to rely on it. Another valued feature are the profiles of people living with HIV.
Because Test Positive Aware Network (now known as TPAN) as an organization was self-advocacy focused, so was the magazine. The magazine facilitated self-empowerment so that the women living with HIV/AIDS I worked with could better navigate safer sex, working in partnership with their medical providers, use safely, and generally take better care of themselves even under difficult circumstances.
Although I’ve retired and no longer formally work in HIV/AIDS, I use PA as a way to keep in touch with what is happening in the field. In addition, the lessons learned are now being applied to my own life, especially as I age with chronic medical issues. The knowledge gleaned from studies of people aging with HIV/AIDS has lessons for the wider aging population—such as what chronic inflammation does to the body, drug side effects and brain health, bone health, and immune responses to new technologies.
I also use what I have learned to be my own healthcare advocate. For instance, I have idiopathic chronic congestive heart failure (CHF), and the self-advocacy I learned from being in HIV communities has saved my life more than once. It has led me to clinical trials and helped me get medications through patient assistance programs from pharmaceutical companies. Above all, I learned how to work in partnership with medical and social service providers. As I age, I worry about some of the same things people living with HIV/AIDS worry about. What will happen to me when I become unable to care for myself at home or cannot afford my home, since I have neither a spouse nor children? I worry about suffering. I worry about becoming mentally incompetent. I worry about being alone. Living wills, advance directives, and powers of attorney can only take one so far. I have come this far by watching the struggles and successes of my brothers and sisters living and dying with HIV/AIDS and by adjusting accordingly my actions toward myself and others. PA is essential to my continued knowledge and well-being.
Saundra Johnson was an activist with ACT UP Chicago, HIV Case Manager with Chicago Women’s AIDS Project (CWAP), and an HIV/AIDS-TB Health Educator with GMHC. In addition, she was a part of the core faculty at the Black AIDS Institute’s African American HIV University as well as a volunteer with several agencies providing services to people living with HIV. Even as Saundra has been on disability since 2013, she still advocates for herself and others.