Karen Ocamb

AIDS History: The 'Mark of Cain' & the Return of KS

Filed By Karen Ocamb | November 11, 2011 1:00 PM | comments

Filed in: Gay Icons and History, Living
Tags: Danny Warner, HIV/AIDS, Karposi's sarcoma, KS, KS lesions, Mark of Cain, Shanti Foundation

During the AIDS crisis in the 80s and 90s, before the discovery of combination drug therapy that turned HIV/AIDS into a "manageable" disease - there were two outward manifestations of having AIDS: the wasting syndrome where once strapping gay men became walking skeletons and the appearance of purple lesions, which some Religious Right types decided was the "mark of Cain" and the supposed visible manifestation of AIDS as "God's punishment" for homosexuality. These lesions were Kaposi's sarcoma (KS), which heretofore had only been known to affect middle aged men of Mediterranean and Jewish descent. Perhaps the best known public awareness of KS came through the 1993 film Philadelphia, in which Tom Hank's character is fired after a homophobic partner in his law firm discovers a lesion on his forehead.

LA Shanti co-founder Daniel P. Warner and singer/AIDS activist Michael Callen at LA Shanti event honoring Callen's fellow composer Peter Allen (Photo by Karen Ocamb)

But writer/activist Patricia Nell Warren's recent piece "KS is back" startled the crap out of me. I thought KS had disappeared with the scientific/medical miracle of combination drug therapy. Not so, as Warren thoroughly points out. As FrontiersLA.com HIV/Health writer Alex Garner noted in his reaction to Warren's piece, we don't have to freak out over the news. With the US Conference on AIDS (USCA) which started this Thursday in Chicago (Alex is attending and covering for Frontiers), we'll no doubt find out more about what's going on.

But just for the sake of LGBT and HIV/AIDS history, I want to take a moment and note how extraordinary it was for those with KS and those of us who cared about them to live with this particular manifestation of the disease. Daniel P. Warner was the co-founder and executive director of the Los Angeles Shanti Foundation, which was initially based on Santa Monica Boulevard in West Hollywood.

LA Shanti co-founder Daniel P. Warner pre-KS (Photo by Karen Ocamb)

Danny is an example of how gay men had to struggle not only with HIV/AIDS but also with the whole mythology around physical beauty. Danny died on his 38th birthday, on Monday, June 14, 1993.

Because of KS and the wasting syndrome and a number of other physical conditions that resulted from HIV/AIDS - the LGBT and other caring communities transformed their whole way of perceiving and being with others. Vanity returned with the miracle of the HIV meds and with the people no longer having to wrestle with spiritual priorities.

AIDS activists/artists gave President Ronald Reagan KS to criticize his lack of response to the AIDS epidemic (Photo by Karen Ocamb)

And while we know HIV/AIDS is far from over - and now know that "KS is back" - I can't help but wonder where are the vocal and visible HIV/AIDS activists? November 7, for instance, marked the 20th anniversary of the day basketball star Magic Johnson announced he was HIV positive and retiring from the sport.

But where are the more everyday folks - people like Flirtations' singer and composer Michael Callen who were transformed into heroes because they stood up for and helped found groups that empowered people with HIV/AIDS to fight for themselves. He raised hell on television and with Congress.

And he refused to let AIDS dictate his life. Diagnoses with HIV in 1982, he had KS in his lungs when he sang "Love Don't Need a Reason," which he co-wrote with Peter Allen and Marsha Malamet in April 1993. He was extremely proud of being able to hold the high note longer than his idol Barbra Streisand might have.

Michael also had KS in his feet and legs. On Dec. 27, 1993, Michael died of AIDS at Midway Hospital. He was 38.

Me giving Michael Callen a back massage in the hospital shortly before his death. KS has hardened his right leg.

If KS is back, as Warren indicates, hopefully the word will get out and people will get tested and treated quickly to avoid the pain and devastation endured by people like Danny and Michael.

(Crossposted in a different form at LGBT POV)

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as a matter of fact all of us should put in mind that hiv currently is incured so avoid contacting it at all means possible but don ignored the infected since they are still alive and we will all die as fact will remain we were born the same way

What a heart-wrenching story. It gives me a lot to think about.

Karen, thank you for sharing this. While I identify as a person living with AIDS, I was thankfully spared of the fate that many faced in the 80's and 90's.

I returned home early yesterday from the United States Conference on AIDS due to a friend having a severe stroke. Back in July and this past Thursday, I had a chance to sit one on one with Jeff Crowley, whom you reported will be leaving the White House at the end of the year, and Jeff stressed that LGBT-organizations are missing in action at a time when they leadership and participation is most critical to the success of the National HIV/AIDS Strategy.

I often ask myself, do our larger LGBT-organizations view HIV/AIDS as the "poison pill" in advocacy for LGBT-equality? At Thursday's lunch plenary, David Furnish, President of the Elton John Foundation stressed that HIV/AIDS is a gay disease that stems from homophobia.

Early next week, I will be posting a few pieces about the conference.

About testing -- if a person tests positive for HIV, this doesn't necessarily tell us whether the person will develop KS or not. KS is caused by a herpesvirus, HHV-8. So no one develops KS who hasn't already got a latent HHV-8 infection. A person can be HHV-8 positive for many years and not know it, because the virus can lay dormant. It only goes into aggressive activity and causes the KS tumors if that person's immune system is gravely weakened and the CD4 count is very low, as in advancing AIDS or chemotherapy. There is a test for HHV-8. Anybody who is HIV positive and concerned about this should talk to their doctor.

I must regretfully confess that the picture of Reagan warms the cockles of my heart.