— from Leif —
December first is the thirtieth anniversary of World AIDS Day. Until actor Rock Hudson’s death three years earlier in October 1985, most here were unaware of the looming worldwide pandemic. The cause and risks of transmission were unidentified.
In the first decade, 250,000 Americans had contracted AIDS and 200,000 had died of it. Those numbers roughly doubled in the following decade. In 2016 over 1 million Americans had the disease caused by HIV the Human Immunodeficiency Virus, with about 40,000 new infections. It now costs about $400,000 to treat someone with the disease. $26 billion is spent annually by HIV/AIDS programs.
I remember the day when nurses became scared to touch someone they cared for with AIDS. In my first week volunteering in an AIDS hospice I had to decide whether to sit down and share a bowl of popcorn a resident offered to me. This is where one’s science molds one’s professional heart and fear wars with one’s convictions.
To me this is the day to remember that many measures to combat this pandemic were first hampered by the battling egos of medical researchers, moralists believing AIDS was literally the righteous judgment of God, and many who felt it could not happen to anyone in their own “tribe.” We feared toilet seats. And the virus raged like a wildfire through those at the margins of society and singed us all.
It is a day to remember what we have learned about ourselves, our “Human Deficiencies.”
thank you, Leif. Beautifully said, and alas still necessary.
Lief, Thank you for a reminder to treasure those I have lost over the years… Wick, Ron, Michael, you were all so dear to me and will always be in my heart!
Leif is absolutely right. Well said, and thank you!
AIDS emerged in the 80’s amidst a “Doctor Knows Best” approach to medicine. In fact, nobody knew best. Providers and patients were learning as fast as they could, and proven treatments didn’t exist. The therapeutic duo learned to become co-equals travelling an uncertain path. Much of the patient rights and empowerment we take for granted today evolved through candid conversations, painful law suits and/or the loud protests of ACT UP.
In the early 90’s Congress enacted state/community HIV Prevention Planning Groups as a prerequisite for receiving Public Health HIV Prevention dollars. Some governments resisted, but came to value the engaged expertise of constituents. Just as in their doctor visits, planning group members no longer met to listen and hear what was going to be done to them. These citizens were charged with three tasks: 1) assess evidence-based prevention strategies, 2) prioritize populations to be served, and 3) approve (or disapprove) the state’s HIV prevention budget. They had moved from having a token seat at the table to planning the menu.
Patients and advocates who died before HIV became a manageable condition- even those who suffered the adverse effects of experimental drugs that didn’t work- didn’t die in vain. Today both publicly funded medicine and government have models for ways to better serve the public when there is a willingness to engage and be responsive.
I hope you had the popcorn with him. There was so much fearmongering and misinformation about AIDs. So many beautiful souls have died of it; without the comfort of touch and sharing. I miss the ones I was fortunate enough to know.
Leif, I well recall hospice nursing in Birmingham, AL., where AIDS patients from the surrounding small towns moved so that they could remain anonymous and find treatment. Birmingham had the first AIDS Support Organization, BAO. We all had a lot to learn about this disease and about caring for the young and dying patients – male and female. Molly
Very poignant, Leif. Thank you!
During my first years as an undergraduate at Columbia in NYC we spent many weekends and week nights with neighbors and their friends suffering from AIDS; we’d meet at the original Stonewall Bar, if not at St Vincent’s Hospital on 14th street in the West Village. We worked along side Act Up activists and its founder, Larry Kramer. We also volunteered to field desperate calls at the GMHC, also founded by Larry. From there ACT UP protests spread nationwide eventually breaking down barriers to funding. Far too late, though, to save so many young souls next to whom we sat for what seemed like a nightwatch for the ages; hospital staff suspended visiting hours to allow us to be present at the very end; I didn’t have any direct friends who suffered from AIDS though it seemed older friends of mine did and so many were taken ill so quickly all around us; while we were unable to do anything more than provide a morphine drip and caress foreheads, we whispered soothing words of release into their final moments. In the early years, many were disowned by their parents; but we there and redefined family when they were most vulnerable and alone. It taught us all a powerful lesson about showing up!
This Tuesday, Dec. 4th, several high school students will be distributing information about HIV/AIDS prevention in the Orcas HS Commons, during their lunch break at 12:45 – 1:30. To recognize World AIDS Day, Teen Representatives of the Island Reproductive Health Initiative have made posters and fact cards for increasing awareness about HIV/AIDS. They hope to promote student support for all efforts to prevent, and eventually cure, this potentially fatal sexually transmitted disease.
Dr. Michael Saag founded the AIDS clinic that Molly Robert’s mentioned in relation to her hospice experience working with AIDS patients in Birmingham, Alabama. Dr. Saag has written a book, “POSITIVE: One Doctor’s Personal Encounters with Death, Life, and the US Healthcare System”, published in 2014. The clinic was connected with some of the early medical research trials the University of Alabama was conducting in the search for treatment to fight AIDS, which Dr. Saag led. The book provides an excellent picture of what problems the medical and patient community faced at that time, and still does.