CARBONDALE — From 2011 to 2015, a small pocket of rural Indiana became a hotbed for HIV.
Over 200 new infections were reported in Scott County, an area of about 4,200 people, the great majority transmitted between intravenous drug users. Hepatitis C spread rapidly, too.
Hindsight would show the outbreak was highly preventable. If state officials had acted quicker to provide harm reduction services like syringe exchange and HIV testing, dozens to hundreds of cases could have been avoided, according to a Yale University study.
And Scott County was not the only outbreak of its kind. Micro-outbreaks of HIV have occurred recently among injected drug users in Ohio, Kentucky, West Virginia and Massachusetts, according to the U.S. Centers for Disease Control and Prevention.
In 2018, CDC researchers identified another 220 counties around the country that are at significant risk of an outbreak. Most are rural and low-income, with high rates of other risk factors like drug overdose deaths and unemployment.
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Among them is Hardin County, in southeastern Illinois. People in the county of just over 4,000 obtained opiate prescriptions at a rate about three times higher than the state average between 2012 and 2017, according to the Illinois Prescription Monitoring Program Database.
The county also has no dedicated harm reduction services.
“Many cities have needle exchanges and methadone clinics, but those things are not easily transferable to rural areas,” said Wiley Jenkins, a physician and researcher in the Southern Illinois University School of Medicine’s Department of Population Science and Policy. “They require a lot of funding that’s simply not available in low-income areas with low population density.”
Scott Fletcher knows that disparity well. Since 2015, he has been the executive director of the only full-time, region-wide harm reduction provider in Southern Illinois: The Community Action Place.
He spends his days driving from town to town, providing no-charge clean needles, alcohol swabs, condoms, disease screenings, and used syringe disposal to clients across about 12 Southern Illinois counties, an area of thousands of square miles.
TCAP meets some clients at its offices in Murphysboro and Cairo, and does home deliveries for others, Fletcher said.
“That’s what often works best for our rural area,” he said. “Clients call us, they get on our schedule and we take them out what they need.”
Today, the organization has about 300 clients on its rolls, with about 90 to 150 receiving syringes each month. Fletcher distributes them in bundles of 100, which might last a client one to several weeks.
He starts deliveries around 6:30 p.m. and sometimes works into the early morning hours.
“It’s about accessibility,” he said. “That's when people want our service. When it’s dark. When the neighbors won’t know what’s going on.”
Fletcher has been involved in the push for region-wide harm reduction since the early 2010s. He built the Community Action Place to fill a treatment void in Southern Illinois after the state budget impasse.
From 2015 to 2018, Fletcher was his organization’s only employee, providing all disease testing and needle exchange services himself, supported principally by a $13,000 annual grant from the Illinois Department of Public Health, plus small private donations and occasional volunteers.
“I went years without a steady paycheck,” he said.
Meanwhile, TCAP struggled to earn the trust of people who use drugs in Southern Illinois.
Fletcher, a tall white man with dark glasses and a buzz cut, has been accused of being a cop more times than he can count, he laughs.
He’s had the door slammed in his face at flophouses, and helped clients who refused to give back their used syringes, afraid of incriminating themselves.
“It took a long time to get those first 90 clients,” he said. “We were almost underground.”
But steadily, the organization’s reputation and its capabilities have grown.
Fletcher built his client base through word of mouth, secured new grants to broaden his services to include sterile drug preparation equipment, and recruited interns and practicum students from SIU Carbondale.
“Sometimes the manpower was nothing more than stuffing bags with cotton swabs or condoms and business cards,” he said. “This journey has really been a community effort.”
This year, through a partnership with Southern Illinois University, TCAP is growing in a big way.
In January the SIU School of Medicine and the University of Chicago announced a three-year, $5.1 million grant from the National Institutes of Health, to study and fight disease transmission among rural drug users.
The goal is to make sure what happened in Scott County, Indiana never happens in Southern Illinois, said Jenkins, who is leading the project, called ETHIC, together with physician and researcher Mai Pho, of the University of Chicago.
Similar federally funded projects are underway in high-risk areas across the country, Jenkins added, from Wisconsin to West Virginia, to Oregon.
Jenkins and Pho first turned to The Community Action Place during ETHIC’s preliminary phase in 2017, asking the organization to help recruit people who use opioid and intravenous drugs across Southern Illinois to share their stories.
The 176 participants were paid a small financial incentive to submit to a survey and a medical screening for transmittable diseases like HIV, hepatitis C, syphilis and chlamydia.
They were paid another small cash gift for recruiting fellow users to take part.
“We asked people to describe the frequency of their drug use, the drugs they use, their sex lives, their interactions with other users, if and when they share needles,” Jenkins said.
What emerged was the most in-depth snapshot ever taken of drug use and its relationship to disease in Southern Illinois.
Some results were reassuring. The study detected a low prevalence of HIV compared to most of the country, Fletcher said: about 4%.
Hepatitis C, however, was much more prevalent, found in about a third of all participants.
“The risk for a swift spread of disease is there,” Jenkins said. “People in Southern Illinois do share needles. Many know it’s not a good idea, but they may do it anyways, or they may not necessarily know that sharing (drug) cooking supplies can also spread disease.”
Now, the universities will use the federal funding to attack drug use and disease from several angles.
They’ll train Southern Illinois doctors on how to treat and manage Hepatitis-infected patients, how to administer craving-reducing treatments like suboxone, and how to build trust with patients who use drugs.
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“Clients reported stigmatizing interactions with doctors to the point that they didn’t want to go to the doctors office,” Jenkins said. “Many feel they are looked down upon. If we can create a more welcoming, respectful environment, people who use drugs will be more likely to seek preventative care.”
The ETHIC project will also expand harm reduction and disease testing across Southern Illinois, by providing substantial new funding to The Community Action Place.
“We are more than tripling our capacity,” Fletcher said.
He and Jenkins hope the scale-up will allow TCAP, the only full-time needle exchange south of Champaign, to expand its footprint in Southern Illinois.
Before the ETHIC project, the agency had clients in 12 counties with a consistent presence in about seven: Jackson, Williamson, Franklin, Alexander, Union, White, Saline and Johnson, Fletcher said.
Now the agency hopes to cover the bottom 16 counties consistently, including more time in Hardin County.
“We’ll be able to expand to places we know have seen upticks in overdoses,” Fletcher said. “There’s towns where we’ve had people tell us: ‘People here need you.’ But we need to establish a presence there to gain their trust.”
Today, TCAP’s offices along Illinois 13 near Murphysboro are stocked with tens of thousands of clean syringes (about $20,000 worth, Fletcher estimates), plus hundreds of vials of the lifesaving overdose antidote narcan, fentanyl test strips, HIV pre-exposure prophylaxis (PrEP) and thousands of condoms.
Four company vehicles sit in the parking lot.
The organization has purchased four centrifuges to allow it to take blood samples in the field for confirmatory disease tests and will soon be opening a location in Benton, to compliment its offices in Murphysboro and Cairo and its pop-up locations at community health departments around the region.
The agency has added five staff members and a practicum student from SIUC over the last year, Fletcher said, including for the first time, an employee to help him do deliveries.
Most of the new workers are current or former clients of TCAP, Fletcher said. Many have attended rehab. All adhere to strict rules around drug use: No buying from or sharing drugs with any TCAP clients. No showing up to work high.
“I believe that a successful program has to include the population that’s being served. People who couldn’t find work anywhere, who might be considered ‘unemployable,’ are able to find work with us,” Fletcher said.
Some users have proven unable to commit to their work or volunteer responsibilities at TCAP, Fletcher acknowledged. But for others, the opportunity has been a step toward stability.
“It gives them a sense of self-worth that they may not have gotten at home, at school, in their communities, or their peer groups,” he said. “It’s a sense of purpose, and a sense that they are valued and valuable.”
As TCAP expands, so will the ETHIC study.
The 176 original study participants will be retested over a three-year period, Jenkins said, and researchers hope to survey another 600 opioid and intravenous drug users in Southern Illinois.
“We want to follow-up every six months after each initial screening,” Jenkins said. “It will allow us to see how disease prevalence changes over time. If someone is positive for chlamydia at their first screening, do they get it again? Once they learn about harm reduction, how often are they using these services? Are they getting tested? Is there a reduction in the number of times they share a needle? Do they begin to engage with medical care?”
Jenkins doesn’t expect a major immediate reduction in infectious disease.
Even with the growth of The Community Action Place and the physician training, the project might only reach a tenth of the drug-using population in Southern Illinois over its three-year span, he said.
But over time, making more users aware of their health status and the treatment available could have a significant impact, he believes.
“In the long term, we do expect to make a dent in disease transmission and we hope to get more people into addiction treatment,” he said.
Both Jenkins and Fletcher are well aware of the controversial nature of needle exchanges.
There are places in Southern Illinois where Fletcher can only make deliveries one at a time, because he fears driving with more than 100 syringes in his vehicle.
“Right now we don’t have the buy-in from the authorities that we need,” he said.
In many places nationwide, needle exchanges are “a political hot potato,” Jenkins agreed, that hospitals shy away from and nonprofits struggle to secure consistent funding for.
However, both men contest the claim that needle exchanges enable drug use.
“Having a clean versus a dirty syringe is not what stops people from injecting,” Jenkins said. “With opiates, the physical addiction is so strong that many people who have been injecting do it just to feel normal. That’s an incredibly powerful drive. People will use whatever needle they have.”
Fletcher has seen people use needles until they were so dull they caused vein damage and other wounds, he said.
“People don’t realize we’re saving hundreds of thousands of dollars of medical costs to our society by providing these services,” he said, preventing infections, injuries and overdoses.
In fact, Jenkins said, studies have shown that drug users who receive harm reduction services are more likely to seek abstinence or drug treatment at some point in their lives.
To Fletcher, that makes perfect sense.
“Harm reduction programs across the U.S. add value to people’s lives because we see those who are injecting drugs, using opioids, smoking crack as people first. Not as junkies,” he said. “We are showing every person that they have worth. And that can help them see their own value and care about their health.”
Fletcher never pushes his clients into rehab, he said. But if someone asks for help getting clean, his organization is there to help, finding the rehab center that’s right for them, dropping them off, and picking them up upon completion of their program.
In a small storage room in TCAP’s office building, amid high piles of medicine and supplies, Fletcher has two red 13-gallon trash cans, with tightly sealed plastic lids.
Inside: thousands of used syringes collected over the past two months, that will soon be sent off for safe disposal.
“Everytime I send those syringes off I think, those are not going to make it into a park,” Fletcher said. “I remind myself of that when a day is hard.”
Both Jenkins and Fletcher will be searching for continuity funding, to keep TCAP’s expanded services going after the grant ends. It will likely be a mix of new state, federal or nonprofit support, plus grants that TCAP already receives.
“We don’t want this to fade away come July of 2022,” Jenkins said.
Besides improving health outcomes, they hope their work will help change attitudes about addiction in Southern Illinois.
It should be seen as a disease to be treated, rather than a moral failing, they said.
“Many people think people who use drugs don’t care about their health,” Jenkins said. “These people do care about their bodies, their kids, living productive lives. Drug use is just one aspect of who they are.”