A 30-year-old medical student, Sarah Ziegenhorn appears to be just another one of the 200 volunteers Iowa Harm Reduction Coalition enlists to drive the outreach vehicle full of naloxone, cookers, sterile waters and condoms.
However, Ziegenhorn has been aiding stigmatized groups for decades, and in 2016, while attending medical school, she co-founded the largest harm reduction in Iowa.
The Iowa Harm Reduction Coalition (IHRC) is a non-profit organization based in Cedar Rapids that offers safety services and supplies to sex workers and people who use drugs. Their services are available to the areas of Cedar Rapids, Iowa City, Dubuque, Des Moines and the surrounding rural areas. Mobile outreach and delivery of supplies, HIV/HCV rapid testing, hotlines, and treatment programs are among the variety of services the IHRC provides to its participants.
Ziegenhorn’s coalition provides a legal but quietly operated needle exchange program, which offers free, clean needles as well as sterile water, cookers and more supplies to people who inject drugs to prevent the transmission of diseases.
The IHRC also provides naloxone or narcan kits, which are used to reverse overdoses. IHRC gives out 100,000 needles a month, serves 5,000 to 10,000 IV drug users annually and has given out 30,000 narcan overdose kits since its founding, Ziegenhorn said. By 2017, IHRC reported that Iowa’s Hepatitis C transmission and opioid overdose rates were dropping fast.
Ziegenhorn’s history of harm prevention began with her family. She spent the majority of her early childhood in Muscatine, working and exploring her family’s farm. She attended the Iowa City Community School District for the entirety of her precollegiate education. However, growing up with a younger brother with severe autism and a father who had chronic depression, a lot of her childhood holidays were spent in inpatient care of the University of Iowa Hospitals. At age 15, Ziegenhorn’s lost her father to suicide.
“Between losing (my father) in such a traumatic way and then having a brother with autism, my family had to spend a lot of time seeking out mental health care and being engaged with the healthcare system while experiencing some pretty stigmatized conditions especially in rural Iowa,” Ziegenhorn said.
Ziegenhorn said that a lot of close family friends had no idea her father was hospitalized for suicidal intentions for most of his adult life, and his condition was so stigmatized in rural areas that many families kept mental illnesses a secret. His struggle with stigma lead Ziegenhorn to question how that treatment could be avoided.
After graduating from McAllister College with degrees in Geography and Community Health, Ziegenhorn moved to Washington D.C., a decision she describes as random and rash. She got a job with the Institute of Medicine, now known as the National Academy of Medicine, a nongovernmental organization that provided scientific information to the federal government.
After a full day of work, one or two nights a week, Ziegenhorn would drive an outreach van around the streets of DC from 10 p.m. until 7 a.m. the next morning, providing supplies such as clean needles, cookers, condoms, disinfectants and other materials needed for street-based sex work and drug use.
The more nights she spent providing basic healthcare necessities to people on the street, the more Ziegenhorn noticed the similar stigma formed around mental illness, like her father’s, and drug use. She concluded that both groups of people, those with mental illness and those who use drugs, face stigma that block them from accessing healthcare from normative institutions.
After five years in D.C., Ziegenhorn returned to Iowa, started medical school and began looking for harm reduction volunteering opportunities. Her search came up blank except for an Iowa law which declared needle exchange illegal. She began her coalition with help from Dan Bigg, the head of the Chicago Recovery Alliance. Bigg supplied Ziegenhorn with the naloxone and syringes when IHRC first started serving the Cedar Rapids area in 2016. Bigg passed away from an overdose a year ago, but Ziegenhorn remembers him as a man who only cared about the wellbeing of others.
“He had meetings with FDA where he’d show up wearing exercise shorts and a giant oversized T-shirt with barbeque stains on it. He would put up a PowerPoint that had the FDA acronym and it would say ‘FDA stands for Fuck over Drug users Always,’” Ziegenhorn said.
Ziegenhorn explains IHRC was created and is run by drug users, for drug users. Ziegenhorn’s seven staff members strives to create a safe, stigma-free environment for all their participants. Ziegenhorn built the IHRC with help from her partner Andrew “Andy” Beeler, who would later become Sarah’s fiancé. For 15 years, Beeler had worked in harm reduction, saving dozens of lives by reversing overdose and advocating for felon voting rights. Beeler also lead IHRC’s Hepatitis C program, counseled 25 participants and provided harm reduction training to methadone clinics. Beeler passed away from an overdose this past March.
“It’s pretty difficult. There’s been a lot of loss in the past year or two, losing a lot of people who were participants in our program, losing really close friends or family members,” Ziegenhorn said. “I don’t know if I have a good response to how I deal with stress other than try and take things day by day. Keep moving forward.”
To move forward, Ziegenhorn continues to focus on changing the legislation. Ziegenhorn has been fighting for legal needle exchange programs since she opened IHRC, however, the needle exchange bill she proposes has yet to make it to the governor’s desk. Ziegenhorn reports that noncontroversial bills take three to ten years to pass, and while 90-95% of legislators in each of the chambers supports the bill, the legislators are hesitant to pass the bill without the full support from every member.
Every year, IHRC hosts several events that work to inform the community and reform legislation. Among these are IHRC’s Day on the Hill where volunteers and advocates gather to speak with state representatives and push for change in legislation involving the opioid crisis, HIV and Hepatitis C.
This upcoming Oct. 4 and 5, IHRC is hosting their fourth annual summit. Five presidential candidates are booked to make an appearance and discuss the overdose crisis in America. Ziegenhorn hopes that this new batch of lawmakers will help push for legislation that would protect people like Beeler, her father and so many other Americans who are affected by stigma.