This Shouldn’t Happen
Recently I ran into a friend of mine, Jim, at the Center on Halsted, Chicago’s beautiful and somewhat lavish GLBT center which opened earlier last year. That particular sunny, summer afternoon the Center was hopping with a diverse group of folks, a few straight, most of them gay—all of whom were comfortably lounging in the café, which is immediately adjacent to the spacious Whole Foods housed within the same building.
Not long into my conversation I happened to inquire about a mutual friend of ours, who I’ll call Sam, who I hadn’t heard from in a while.
No, Jim said, he had not heard from Sam, but another friend of his had, just a few weeks earlier, when Sam had called him from a pay phone. Sam informed his friend that he wasn’t doing well, that his phone had been disconnected, he was about to lose his apartment, and his health was quickly failing.
I was shocked. For a second I was speechless. Sam and I have known each other for more than 25 years—he was one of the first to befriend me when I moved to Chicago way back in the early eighties. We became close friends, and shared a lot in common, having moved in many of the same social and professional circles. He tested positive around the same time as I did. After I became positive and started working at TPAN, he would periodically call me on the phone for advice about his treatment or health care, or sometimes just to talk. We would get together from time to time, but our lives eventually grew apart, and we began to see less and less of each other, as friends often do. He eventually moved out of state, but we still kept in touch. And we always made it a point to call each other on our birthdays, which are exactly six months apart.
The last time I had tried calling Sam was a few months ago, on his birthday. I got a recording telling me the number had been disconnected. Somewhat confused, I quickly leafed through an old, tattered address book, searching in vain for an alternate number, or an old snail-mail address. I dialed directory assistance, even tried a search using Google. But it was to no avail, Sam always made sure his number was unlisted, and he had never learned to use a computer, so there was no e-mail address to try sending him a message.
When Sam and I had last spoken, he was doing well and living on disability. Although he suffered from chronic pain and neuropathy, and experienced complications from the drugs and from HIV, he had recently gone back on meds, after having been on an unplanned, extended drug holiday. His numbers were up, and he was feeling pretty good, most of the time anyway. While he had initially had some difficulty accessing services and care when he had moved to a large city in a nearby state (a place that makes Chicago look like a walk in the park), he had finally gotten assistance from a local organization to help him navigate the system.
Yes, wellness begins with awareness. But once we are aware of our HIV status, and we start to become more in tune with our own health—and do what it is we need to do to learn how to navigate the often confusing maze of Medicare and our broken-down system of care, it still doesn’t always guarantee wellness. A recent poll showed that 90% of the people who called the 1-800-Medicare hotline—a helpline which was mandated by Congress in order to assist people who had questions about all of the recent changes in Medicare— were given at least one piece of incorrect information. 90%! And the majority of callers were given conflicting answers from different operators.
People with HIV/AIDS still struggle on a daily basis just to get the basic necessities such as decent and affordable housing, access to care and treatment, case management and mental health services, and to be free from stigma and discrimination. This shouldn’t be happening in the United States, one the wealthiest nations on the planet. And tell me, just who is going to advocate for these individuals during this next administration, which stands to inherit a budget deficit upwards of 10 trillion dollars?
As we go to press with this issue, the CDC released the 2006 HIV incidence statistics which show that new cases of HIV infection are actually 56,300 annually, not the 40,000 that had previously been reported. These numbers have probably been at that level for at least the last 10 years. The report indicated that this does not actually reflect an increase in the rate of transmission, but rather that the previous estimate of 40,000 was too low. Some consolation. And these statistics are already two years old.
So we push to test, test, test. People are still becoming infected. And they continue to fall through the cracks in a system in desperate need of repair.
This shouldn’t happen.
Sam, I know you’re out there, and if you’re reading this—I love you, man. Call me. I’m here for you.
Take care of yourself, and each other.
Jeff Berry
Editor
publications@tpan.com
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