TOYS ’R’ US
I was deeply touched by the article featured in the May 2003 issue [“Children of a Lesser God”]. The text and revealing photographs were truly compelling. In the late 1990s, I lived in Bucharest while working for an advertising agency. After seeing so many street kids and knowing that many of them were HIV positive, I took it upon myself to deliver McDonald’s Happy Meals to them. Although malnourished and living in poverty, these children were not interested in receiving food. They only wanted to play with the toys because they had none of their own. The bright smiles and warm hearts in the Romanian children feature reminded me of those I had met who also endured life in appalling conditions and who probably have now passed away.
I am glad that publications such as POZ are delivering hopeful messages, since the media plays a huge role in curbing this disease. Thank you for showing us the faces of those who are surviving.
Founder and Director, YouthAIDS
TAKE ME TO THE LIVER
Having had a liver transplant in July 2002, I want to congratulate you on the accuracy of your article, “Liver and Let Live” [May 2003]. I wish I’d been able to read it while I was awaiting my new liver. One caution: The article states that recovery time may vary, but to expect three days in the Intensive Care Unit (ICU), three weeks in the hospital and three months to fully recover at home. I had been told this, too, and became very concerned after my second week in ICU. In all, I spent five weeks in ICU, 10 weeks in the hospital and about two months at home recovering. I don’t want people to get their hopes up or unnecessarily worry if their recuperation time is not “average.” In the end, the outcome was great, and I have more energy now than I’ve had in years.
I have always felt that although POZ is extremely supportive of the HIV community, if a story doesn’t involve famous names or sad children, it’s generally overlooked. It seems easy for wealthy people or obnoxious activists like Larry Kramer to get financing to pay his medical bills, get his picture on the cover of Newsweek and get a liver transplant. But what about guys like me with no money, who continually get inept HIV docs and get labeled “problem patients” for taking aggressive action with their own therapies? It’s nice to know that HIVers can now get liver transplants, and the cost is only a quarter million, but that doesn’t mean someone like me could ever afford one, or even get on a list for one.
Via the Internet
POZ responds: “Obnoxious” activists like Kramer are busting their asses to raise awareness of the critical need for organ donors and resources to cover transplants. And for the record, no AIDS activist has ever made a Newsweek cover.
Your writer Tom Beer is obviously naïve about Social Security [“Big Easy,” May 2003]. With HIV, opportunistic infections, peripheral neuropathy and my pain still uncontrolled, I filed for benefits in December 2001. Twelve months later I received my first denial; the second took another nine months. My case has dragged on for 30 months now, every step taking at least double the statutory 90 days. Before publishing such ill-founded “reportage,” get your facts from more than one source, and preferably from both sides of the coin. Mr. Beer seems to have interviewed only some rara avis of a government worker.
River Edge, New Jersey
Tom Beer responds: No one denies that applying for benefits can be a drawn-out, dispiriting experience. In profiling Karl Ezkovich, POZ wanted to pay tribute to a volunteer advocate (he is not a government employee) who is making that process a little easier for HIVers. Rara avis? Perhaps, but we’re glad we sighted him.
I appreciated your Editor’s Letter on the 20th anniversary of the Denver Principles [May 2003]. It made me happy to see those brave souls remembered for forging a path that was righteous, bold and defiant.
During my tenure with Treatment Action Group, when I gave presentations on the history of AIDS treatment advocacy, I would enunciate my favorite principle: “Be involved at every level of decision making and specifically serve on the boards of directors of provider organizations.” I fear that now many PWAs and advocates have forgotten that right. We must use our voices, collective intelligence and strength. Not to do so would be playing the role of the victim. That’s unacceptable and a slap in the face to those who came before us.
THE NAKED TRUTH
I would like to explain what happened with former gay porn star Sir Bobby Blake at the Blacks Assisting Blacks Against AIDS function on July 20, 2002, which I attended [“BABAA Black Sheep,” April 2003]. From the start of the party to the discussion of health-related topics, everyone in attendance had a great time. Sir Blake came out wearing boots, a green towel and a red, sheer-silk, dragonlike housecoat. He gave a demonstration on what he can do, and it was great! The money that was used to fight syphilis should not have not been taken away from BABAA. Sir Bobby Blake did nothing wrong.
St. Louis, Missouri
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