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AIDS Activism history includes acupuncturists - An Elizabeth Ropp Article

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Find the original article on Elizabeth's Medium page 

A follow up on my Open Letter to the creators of POSE

Last year the Coronavirus pandemic kept me and other “non-essential” workers at home. I kept myself busy. I watched POSE seasons One and Two on Netflix. I read The Great Believers by Rebeca Makkai, a novel centered in 1980s Chicago at the height of the AIDS epidemic. I talked on the phone with other acupuncturists on unemployment.

After binge-watching POSE, I wrote an open letter to the show’s creators. I wanted one scene that includes acupuncture. A big ask, I know. I did get my article to a college classmate who worked as an editor on POSE. She had no idea that acupuncture was widely used in the 80s and 90s to support people living with AIDS and to manage side effects of medications. Since then I have connected more acupuncturists who shared their stories with me.

In 1987 four Chicago acupuncturists and one nurse emptied whatever was in their pockets. With $240 they started the AIDS Alternative Health Project (AAHP). “Everything we were doing was absolutely illegal, says AAHP co-founder, Mary Kay Ryan. As an acupuncture student, she watched her teacher, Jake Fratkin, get arrested. “An acupuncturist couldn’t even rent an office…Once we started these free AIDS clinics, the idea that anyone would raid an AIDS clinic was off the table. It politically would have been fucking suicide to do that.”

 

photo by Jennifer Griffin

Ryan and her AAHP colleagues came of age in the 60s. Ryan said goal was to challenge a healthcare system that costs money and to raise standards of care. They were influenced by the Black Panther Party, and other Revolutionary groups, who started free medical clinics.

“We made the hospitals look like complete shit.” Ryan recalls working with a patient who had sores all over his body. “It was because he was in the hospital for twelve weeks and no one bathed him because no one wanted to touch him.” Patients got better care from acupuncturists running free clinics. That made them demand better care from their doctors. “The patients kept saying [to their doctors] these people aren’t even making any money. They’re starving and they’re nice [to us]. And you guys make boatloads of money and you treat us like shit.”

AAHP co-founder John Pirog was mentored by Dr. Mike Smith director of The Lincoln Detox in the South Bronx. Lincoln was the first acupuncture based outpatient chemical dependency program in the country. Pirog also volunteered at St. Basil’s, a free clinic on Chicago’s Southside. St. Basil’s was founded by Austrian physician Dr. Eric Kast. Kast was a Marxist born to Jewish parents who converted to Christianity. He collaborated with Black Panther leader Freddie Hampton on establishing free medical clinics.

 

Photo by Sawyer Bengtson

 

AAHP moved around to a few different locations. They started in a church basement. They moved into a tiny cold office because it was free. The best arrangement was using the same offices as their private practices. “We were very busy when we first started. We had a six month waiting list.” Unfortunately this meant that people died while on the AAHP waitlist.

In 1990 Ryan split with AAHP over philosophical differences. She and co-founder Arthur Shattuck started a new clinic. They opened the Northside HIV Treatment Center (NHTC) in a fourth floor office of an old bank building. In 1994 they wrote the book Treating AIDS with Chinese Medicine.

Many doctors were skeptical of acupuncture. But some doctors were supportive. They snuck her into the Masonic Hospitals after hours to treat patients on their death beds. A few doctors also snuck her and Shattuck into meetings with other doctors. “There must have been 20 doctors there who were completely cynical. One doctor sneered at Arthur and asked “What do you mean by increasing energy?” Shattuck described a particular patient’s response to acupuncture treatment. “We mean that a patient who had been in bed for 12 weeks was unable to get up and go to the bathroom without help. Then he had acupuncture, and then he could get up and go back to work. That is what we mean by increasing energy.” The rest of the doctors laughed at their dismissive colleague.

AAHP and MHTC worked because of direct patient involvement. Patients painted and renovated treatment rooms. They ran the front desk and did the laundry. Fundraising was always a challenge. They got by on some grants and donations. It was hard to get funding for acupuncture, which was illegal to practice until 1999. The NIH and the City of Chicago encouraged Ryan and her colleagues to apply for funding only to turn them down.

Ryan moved on from NHTC shortly after publishing her book. She was raising small children and treating patients in her private practice. In the late 1990s she moved overseas and taught acupuncture at a college in Ireland. The work that she started in 1987 with her colleagues carried into the early 2000s. AAHP changed it’s name to Alternative Health Partners (AHP). They continued to provide acupuncture and massage therapy until 2001. AHP and NTHC even ended up renting offices in the same building in the late 90s.

Today, Community Acupuncturists offer treatment in group settings like AAHP and NHTC. Some practitioners started out at AAHP and NHTC as volunteers. Tatyana Ryevzina practiced shiatsu in Chicago and volunteered at AHP. Later, she moved to the Bay Area to study acupuncture. She co-founded Sarana Community Acupuncture in Albany, California. Robert Hayden volunteered at NHTC as a student at Midwest College of Acupuncture. Now Hayden runs Presence Community Acupuncture in Hollywood, Florida. Hayden had some poignant experiences at NHTC, “One night I treated one of my regular patients. When he left, he told the front desk receptionist that he felt completely at peace. He passed away later that night. We were the last people who saw him.” He also recalls a patient who was in charge of laundry service. “He was skin and bones and had sores on his face.” When that patient disappeared for awhile Hayden assumed that he had passed away. The patient returned to NHTC looking unrecognizable because he was taking protease inhibitors. “He was healthy and plump. I thought, ‘is this the same guy?’”

I wrapped up my conversation with Mary Kay Ryan talking about Bernie Sanders. We both agree that a for-profit medical system will never truly embrace acupuncture. “Acupuncturists need to join the fight for Single Payer Healthcare,” says Ryan. “If it ever passes and we are not there to help, acupuncture won’t be part of it.”

 

 

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