“The Eyes Have It” declares the first cover of Positively Aware, November 1990. Back then, figuring out what to do about complications of AIDS—like cytomegalovirus (CMV) that can cause blindness—weighed heavily. There was only one HIV medication, AZT, and used by itself it was a weak fighter against the virus.
Today we don’t even say “AIDS” anymore. True, too many people, even young people, still develop AIDS and even die.
Most people who acquire HIV today, however, are expected to remain AIDS-free if they can stay on the powerful and tolerable medications available today—just one pill a day. They can also enjoy a normal lifespan.
Today, as then, Positively Aware is here to help for better health and for a better life. Below are excerpts from our journey over the decades.
You Are Not Alone
by Jim Lewis and Michael Slocum
Maybe you tested HIV positive very recently, or maybe you’ve known for some time but this is the first time you have reached out for information or support. You need to know that YOU ARE NOT ALONE. There are an estimated 1.5 million people who are HIV positive in the United States and over 40,000 here in Chicago.
Testing positive for HIV does not mean you have AIDS, but HIV is probably the greatest test to your life you have ever faced. This virus may remain inactive in your body for a long time, but it may not. If you are healthy now, you may still go on to develop some sort of health problems related to HIV. You may develop AIDS.
There remain many uncertainties surrounding HIV, and though there is currently no cure for HIV infection, there are treatments. You need to learn what information is available, and work to make informed choices about your health.
HIV A to Z
Editor’s note by Bob Hultz, Senior Editor
Looking for books about HIV and AIDS can be a depressing experience. Many stores carry nothing on the subject. Most have just a few light-weight titles. And a few have so many dense and expensive texts that the shopper is overwhelmed.
This issue of Positively Aware is intended to provide relief for those who are thirsty for information and for those who are drowning in information.
Ryan White Legacy Hangs On—For Now
by Steve McGuire, Editor
More dramatically than ever—and more than just about any other illness—HIV/AIDS shows that questions of health cannot be disentangled from politics. And any politician, bureaucrat, or government official who argues that policy and funding decisions are made with little more than good health and good policy in mind is fooling no one but him- or herself.
Interest Accrues Over Time
Editor’s note by Brett Grodeck, Editor
Since I tested positive for HIV 10 years ago, my battle cry has been a simple, satisfying phrase: “Charge it.” Armed with credit cards, I became a shopping monster. I filled out credit applications like lightning. Bill me later? You bet. Deferred payment plan? I’ll take the 10-year option. Interest accrued over time? No problem.
After all, I had HIV. And back in the 1980s, that meant I was going to die. Yeah, yeah, we’re all going to die someday. The difference was that I was going to die about 50 years early. So I went shopping. I toured Europe. I hung out at nightclubs. I drank beer, smoked cigarettes, and ate greasy hamburgers. I figured I had little to lose.
…Thanks to recent medical breakthroughs, my T cells outnumber the dollars in my checking account. Those Visa bills have caught up with me. Oh, well. I’m thrilled to be around to pay.
HIV and Community: Discovering Treatment Strategies
by Steve Whitson, Editor
At first it seems a rather odd notion that those who are HIV+ belong to a community. But the diversity that brings us together is a powerful and influential reminder that our many different voices speak to the same causes and concerns. Coming together politically and culturally empowers us in an activism coalition that is truly powerful.
HIV, Drugs, and Feeling Like Crap
by George Carter
The meds are working. Your viral load is undetectable. Your T cell count is good. Yet you feel like something the cat dragged in. Maybe you feel okay but you look like hell (at least as far as you’re concerned). Or maybe you’re not on drugs—because you’re still relatively healthy and you want to wait, or you’re scared of side effects. There is more to life than T cells and drugs. Just as you’ve taken care of your health and life confronting HIV disease, now you must also try to figure out how to get the best use from the drugs without them disfiguring or killing you.
ADAP in Crisis
Editor’s note by Charles E. Clifton, Executive Director/Editor
This issue of Positively Aware focuses primarily on the promising news related to HIV therapy and new treatment options coming out of the 2003 Conference on Retroviruses and Opportunistic Infections (CROI). Yet, the reality of the situation is that more and more men, women, and children in the U.S. are being left on the outside looking in when it comes to access to healthcare and medicines. In a guest editorial, my good friend Carl Winfield discusses the crisis in ADAPs across America and what it means as the number of uninsured and low-income people living longer with HIV climbs, as the annual cost of anti-HIV drugs continues to increase, and federal support for ADAP slows.
by Enid Vázquez
Gone are the days when transplant centers refused patients with HIV. Today, it’s common knowledge that with the powerful HIV medicines available, people living with the virus can expect a much longer and healthier life, making the arduous job of a transplant more feasible.
“Most transplant centers are not looking at HIV as a contraindication [two things that don’t go together], but as a challenge,” says Dr. Patrick Lynch, a hepatologist at Northwestern Memorial Hospital in Chicago. “Although not everyone with HIV will meet all the criteria for a transplant, it’s good to know that it’s available.”
Sexual Encounters with Undetectable HIV-Positive Men
by Daniel S. Berger, MD, in his column, The Buzz
Many HIV experts have recently become embroiled in a new controversy: Does an undetectable viral load translate to significant reduction in HIV transmission during sex? If so, are condoms necessary? What message should be imparted by physicians to their patients who confront this situation in their lives?
In January 2008, an important and prestigious panel of experts from the Swiss Federal Commission for HIV/AIDS boldly produced the first-ever consensus statement saying that HIV-positive individuals on effective antiretroviral therapy and without sexually transmitted infections (STIs) are sexually non-infectious. This opinion was also published in the Bulletin of Swiss Medicine (Bulletin des Médecins Suisses). Hotly discussed at the International AIDS conference in Mexico City this summer, it was soon followed by a rejection statement by a joint Australasian group of experts.
…In layman's terms, this means that barebacking among HIV-positive persons who are on the cocktail who have undetectable viral load would not transmit HIV to their partners.
HIV Stigma and Disclosure: Can Social Support Help?
by Zoltan Nabilek
One might wonder how much our friends and family influence our lives. Being HIV-positive, we rely on our social network for advice, emotional support, and information. In order to receive this support, we have to disclose our HIV-positive status. Disclosing one’s status almost always has some risk attached to it. We might be rejected by the friend or family member, or might suspect discomfort from them when they find out about our status. The advantages of disclosing one’s positive status are well known, and one of them is that there is a “practice effect.” After carefully considering when and to whom to disclose, we might receive a positive response from our social network. This positive experience could encourage us to disclose our status to others as well.
Reclaiming Emotional Wellness: The Challenges of HIV and Mental Health
by David Fawcett, PhD
Deep in the shadows of the AIDS epidemic there are powerful forces that dramatically impact the quality of life for many living with HIV. Depression, anxiety, post-traumatic stress, and other mental health disorders can confuse, discourage, and stigmatize a significant portion of HIV-positive people.
Mental health impacts the full spectrum of HIV. It can determine who is at risk for acquiring the virus (people with a history of trauma or depressive disorders are more likely to become infected) and, after sero-conversion, it affects quality of life, medication adherence, levels of social support, and even the progression of the illness.
A Day with HIV
(From the cover) 5:42 p.m.: Denver, Colorado; Davina Conner: At the park with my great niece. Showing everyone that joy doesn’t stop. Live life to the fullest. Stop HIV stigma.