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Surviving AIDS
Relates the experiences of long-term survivors of AIDS and includes reports on recent medical research
243 pages, Hardcover
First published November 1, 1990
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September 14, 2022
LONG-TERM SURVIVORS
Surviving AIDS by Michael Callen is an astonishing read, particularly if you keep in mind that it was written and published during the height of the AIDS crisis. My impression is that this book was a beacon of hope with its message that AIDS was not necessarily a death sentence. Callen writes: “Whatever its source, the endless repetition of the lie that everyone dies from AIDS denies the reality of—but perhaps just as important, the possibility of—survival.”
In his “Thanks” at the beginning of the book, Callen thanks feminism for its critiques of the health care system and, especially, he thanks “the women, particularly the lesbians, who have labored so thanklessly in the struggle to end AIDS.”
Following are several quotations from Surviving AIDS that I will remember for a long time:
“The common thread that runs through my AIDS activism has been a passionate belief that hopelessness kills.”
“Believing in the possibility of surviving AIDS is the necessary precondition of actually surviving AIDS.”
“One reason I’m alive today is because I’ve managed to avoid PCP.”
“I’m alive today because of what I didn’t do than because of what I did do.”
“Yes, attitude matters. But, ultimately, controlling AIDS is going to require finding the right combination of drugs.”
“The cutting edge of AIDS treatment research is the growing network of more than twenty-five community-based research groups in the United States whose top priority is the prevention of opportunistic infections.”
In Surviving AIDS, Michael Callen interviews thirteen long-term survivors of AIDS, “men and women, gay, straight, and bisexual, black, white, and brown, each of whom is living a remarkable life” (from front jacket flap blurb). Callen defines “long-term survivor” as “anyone who has survived full-blown AIDS for three or more years.” He writes: “The overwhelming majority of long-term survivors I interviewed have refused to take AZT.” The impact these stories had on readers of the book when it was first published must have been tremendous.
In 1990, Callen was optimistic that a cure for AIDS would be found. It’s now 2022, and, to the best of my knowledge, no cure for AIDS, no vaccine, is in sight.
In his afterword, Callen mentions: “All but four of the survivors profiled in this book are still alive and thriving.”
In Surviving AIDS, Michael Callen controversially included a chapter title “The Case against AZT.” I recall that an ex-partner who tested positive for HIV in early 1987 had told me that AZT made him sicker, so he stopped taking it. When he was in a drug trial, if he found out that he was on a placebo, he would drop out of the trial. He eventually reduced his viral load to undetectable. Unfortunately, he died of a heart attack in late 1999.
Also, in Surviving AIDS, Callen emphasizes the importance of being on prophylaxis to ward off PCP. Tragically, another partner of mine was stubborn. He would never get tested. When he went into the hospital in January 1996, he wouldn’t allow an HIV test. He was diagnosed with PCP and didn’t have a chance. Prophylaxis didn’t help him. He was on all the drugs that the ACT UP guidelines recommended at the time. He passed away on March 1, 1996. The protease inhibitors were just coming out.
I learned a great deal from Surviving AIDS by Michael Callen.
Surviving AIDS by Michael Callen is an astonishing read, particularly if you keep in mind that it was written and published during the height of the AIDS crisis. My impression is that this book was a beacon of hope with its message that AIDS was not necessarily a death sentence. Callen writes: “Whatever its source, the endless repetition of the lie that everyone dies from AIDS denies the reality of—but perhaps just as important, the possibility of—survival.”
In his “Thanks” at the beginning of the book, Callen thanks feminism for its critiques of the health care system and, especially, he thanks “the women, particularly the lesbians, who have labored so thanklessly in the struggle to end AIDS.”
Following are several quotations from Surviving AIDS that I will remember for a long time:
“The common thread that runs through my AIDS activism has been a passionate belief that hopelessness kills.”
“Believing in the possibility of surviving AIDS is the necessary precondition of actually surviving AIDS.”
“One reason I’m alive today is because I’ve managed to avoid PCP.”
“I’m alive today because of what I didn’t do than because of what I did do.”
“Yes, attitude matters. But, ultimately, controlling AIDS is going to require finding the right combination of drugs.”
“The cutting edge of AIDS treatment research is the growing network of more than twenty-five community-based research groups in the United States whose top priority is the prevention of opportunistic infections.”
In Surviving AIDS, Michael Callen interviews thirteen long-term survivors of AIDS, “men and women, gay, straight, and bisexual, black, white, and brown, each of whom is living a remarkable life” (from front jacket flap blurb). Callen defines “long-term survivor” as “anyone who has survived full-blown AIDS for three or more years.” He writes: “The overwhelming majority of long-term survivors I interviewed have refused to take AZT.” The impact these stories had on readers of the book when it was first published must have been tremendous.
In 1990, Callen was optimistic that a cure for AIDS would be found. It’s now 2022, and, to the best of my knowledge, no cure for AIDS, no vaccine, is in sight.
In his afterword, Callen mentions: “All but four of the survivors profiled in this book are still alive and thriving.”
In Surviving AIDS, Michael Callen controversially included a chapter title “The Case against AZT.” I recall that an ex-partner who tested positive for HIV in early 1987 had told me that AZT made him sicker, so he stopped taking it. When he was in a drug trial, if he found out that he was on a placebo, he would drop out of the trial. He eventually reduced his viral load to undetectable. Unfortunately, he died of a heart attack in late 1999.
Also, in Surviving AIDS, Callen emphasizes the importance of being on prophylaxis to ward off PCP. Tragically, another partner of mine was stubborn. He would never get tested. When he went into the hospital in January 1996, he wouldn’t allow an HIV test. He was diagnosed with PCP and didn’t have a chance. Prophylaxis didn’t help him. He was on all the drugs that the ACT UP guidelines recommended at the time. He passed away on March 1, 1996. The protease inhibitors were just coming out.
I learned a great deal from Surviving AIDS by Michael Callen.
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