Talk Back to “Bareback”
We knew we were taking on a touchy subject with the February 1999 “Boys Who Bareback” issue, and your deeply felt responses only confirmed it. The unprecedented number of letters gave voice to many views—shock, outrage, grief, gratitude, testimonies, threats and a few cancelled subscriptions—and truly took the debate to the next level. Hear what your fellow POZ readers had to say in the expanded letters section of next month’s fifth-anniversary issue.
Huffin’ and Puffin’
Did Mario Cooper talk to anyone who actually lives in San Francisco before he wrote that preposterous puff piece about Mayor Willie Brown (“The Mayor of Market Street,” January 1999)? If he had, he might have heard about a mayor widely regarded as a sort of developer in chief, who is out of touch with the daily struggles of most San Franciscans, including people with HIV.
More important, he would have learned that Brown had little or nothing to do with the “innovations” with which POZ credited him. For example, the post-exposure prophylaxis program and efforts to study and support medication adherence among the homeless were instituted by the health department. When he took office, Brown inherited perhaps the best public health infrastructure of any city in America. To his credit, he has supported it, but in San Francisco that’s expected.
Furthermore, the city of Oakland and nearby Marin County have done far more than San Francisco to support medical marijuana. And San Francisco’s support for needle exchange predates Brown’s tenure by several years. Indeed, what is most striking about these two issues is the reluctance of Brown—arguably the most influential Democrat in California—to use his party clout to get President Clinton and drug czar Barry McCaffrey to call off their mindless attack on the sick.
Thank you for another fascinating issue of POZ and timely reporting of AIDS in the black community. I was grateful to see an issue like the “Eyes on the Prize” one, which devoted so much coverage to AIDS in minority communities. Keep up the fight.
New York City
I am a medical writer who reads POZ because it is such a quality magazine. However, in the article on neuropathy in your January issue, every mention of opiods for pain relief in the chart was accompanied by a warning about addiction (“Numb and Number,” January 1999). Actually, when opiods are used correctly for pain control, the chance of addiction is relatively low. Yet many doctors retain their fear of opiods because they are ignorant of the most recent clinical information.
Pain management and medicine is a fairly new specialty. Even though pain clinics are becoming more common, studies continue to show that AIDS pain is underrecognized and undertreated. People should know that they do not have to suffer—much of their pain is treatable.
King of Prussia, Pennsylvania
POZ responds: Multiple studies have shown extremely low risk of addiction to narcotic painkillers when used for treatment of pain in those without a history of drug or alcohol addiction. No one should suffer needlessly because of inappropriate reluctance to use opiate agents when needed. We regret the error.
I present your magazine to my five doctors as we track my treatment plan. Your reporting has helped many patients suffering from peripheral neuropathy. We thank you!
I enjoyed “The Best, Worst and Weirdest 1998” until I got to “The year Donna Summer last had a hit… That’s 1982” (January 1999). I guess the “worst” in your article applies to research on music. In 1983, Donna hit No. 3 with “She Works Hard for the Money” and in 1989 hit the Top 10 again with “This Time I Know It’s for Real.” Last year she won a Grammy in the first-ever dance music category.
Sean Strub’s article about his personal ordeal with his HMO and the prescription drug Serostim almost read chapter and verse like my own experience (“Waste No Time,” January 1999).
After reading “Body Snatchers” (June 1998), I carefully scrutinized my reflection, and there was no denying it—I had a protease paunch and a buffalo hump, in addition to escalated triglycerides and cholesterol. My doctor issued a prescription for Serostim, and the nightmare began: The HMO said Serostim is not in its formulary, it’s a pharmacy benefit. The pharmacy said it’s a medical benefit because it’s injectable. Then, “no, we can’t provide this as we have no information on lipodystrophy”; “yes, we can provide it. Have your doctor refax the prescription”; “no, it hasn’t been approved by the FDA for this condition. Have the patient send us the information he downloaded from the Internet, as we have no record that this condition exists.”
After three days of calling my HMO and being repeatedly rebuffed in my request for a supervisor, I said, “Today I will cease all meds. If you won’t honor a bona fide prescription, you’ll have the luxury of paying my hospital bills as my health declines, and be assured I will have my doctor order every conceivable test—regardless of expense.”
That got their attention—the prescription was filled by the end of the week, and so far the results have been startling: The hump is gone, my legs are fleshed out, my face no longer has a gaunt look, and my stomach no longer resembles a bloated watermelon. So it was worth the fight. And it was interesting to discover that California’s MediCal, the state-operated health plan, covers Serostim with little or no question. HMOs could learn a lesson: The patient always comes first.
This sentence in Sean Strub’s December 1998 editorial woke up feelings in me: “In some cases, a person with HIV is subject to arrest, prosecution and imprisonment simply for failing to disclose his or her status to a partner, even when condoms were used and HIV transmission never occurred.”
While serving a prior sentence at Central California Women’s Facility 7, I learned of my HIV positive status. My lover was negative, and we were found one morning sexually engaged. At first it was no big deal, but an official who was aware of my status went wild. I was placed in administrative segregation for two months, single-celled, with high risk written in red by my name. My lover was questioned, asked if she’d be willing to press charges and told that she could confide in the prison staff that we did not have safe sex.
I was moved to Frontera, California CIW for my remaining eight months—no yard, very little movement and my only contact with people was the 12 to 14 of us in Walker A Unit, locked down 24/7.
Three of my peers passed away in those eight months. And I never want to relive the pain, anger and fear I felt when I was put on exhibit in September 1994.
Strub Gets His Strokes
I’ve been reading POZ on and off for two years, and I just recently subscribed. Having Sean Strub’s blood work explained in language I can comprehend has helped me understand what I am going through. Seeing Sean’s picture and reading his editorials makes him a human being I can visualize.
Via the Internet
My partner and I have been living with HIV for more than 12 years. We both appreciate and look forward to each issue of POZ. I’ve noticed that Dr. Lark Lands has joined your staff as science editor. We met several years ago and she has been my idol ever since. She alone has done so much to improve the well being of people with HIV, and I enjoy knowing that she is serving in such a great capacity.
I’ve been in the Mark W. Stiles Unit since November 1995, and I’ve been HIV positive since 1988. The medical treatment in this unit stinks. There is
so much cruelty from the medical aides and some nurses that it’s enough to drive a person insane.
At the present time I’m supposed to be taking a lot of medication, but the aides either don’t come on time or forget your medication. I’ve been threatened twice by two different officers for informing the aides that they have forgotten some of my meds. Plus, I’m taking liquid Ritonavir, and these people expect me to take this nasty-tasting medication without chocolate milk or a snack. They tell me to drink water.
I asked the doctor at the University of Texas Medical Branch about being eligible for the study program, and the answer was no. So as I write this letter, I’m refusing all treatment and medication because I refuse to let the staff kill me. Because of their medical negligence, too many people here have already died.
Mark Stiles Unit