Central Illinois Friends began 30 years ago in the height of the AIDS epidemic as a hospice center for patients dying of the disease.
The agency is still headquartered in downtown Peoria, but Executive Director Deric Kimler says it now serves as a financial support center for those living with HIV, and there’s no longer any need for a hospice center.
“We’re at a point now where people living with HIV can live a full lifetime just like anybody else, 80s, 90s, 100s,” he said.
Kimler said the world of HIV has changed radically since scientists first discovered the virus. Whereas caregivers once focused on comforting the dying, treatment now focuses on suppressing the virus in those living with HIV.
“So if they’re on their medications, they can become undetectable, which is untransmittable,” he said. “So women living with HIV can have babies with zero risk of transmission to their child, people living with HIV can be sexually active with a partner with zero risk of transmission, and that is also true if a man living with HIV wants to have a baby with a female that is living with HIV, they could do so. And no worries of transmission.”
Combined with prevention and education services, and expanded access to care through the Affordable Care Act, it’s a strategy that’s largely working.
New York City, Philadelphia, San Francisco and other cities across the U.S. reported falling rates of new HIV infections in 2019.
Illinois also saw new HIV transmissions drop by 25% between 2008 and 2017, according to the Illinois Department of Public Health.
In May of last year, the Getting to Zero Illinois project officially released its plan to end the HIV epidemic by 2030. That would mean reaching a “functional zero,” where the state records 100 or fewer new cases of HIV annually.
The plan focuses on two primary goals: increasing both the number of people living with HIV who are virally suppressed and the number of people vulnerable to HIV who use pre-exposure prophylaxis, or PrEP, by 20%.
Its creators admit the plan is an ambitious one.
And HIV care specialists in Central Illinois say there needs to be a greater focus on rural HIV if the state hopes to meet its 2030 goal.
Because while the progress in urban areas is encouraging, the headlines tell a different story in many of America’s rural communities.
Five years ago the rural town of Austin, Ind., suffered a historic HIV outbreak, with more than 200 individuals infected. Health officials connected the outbreak in part to a rise in injection drug use.
Cabell County, W. Va.—where the city of Huntington was labeled the “overdose capital of America” in 2017—diagnosed 80 new HIV infections between early 2018 and November 2019.
Even as towns like Austin are still recovering, the CDC warns more communities across the nation are at risk of suffering similar fates.
Data released in November 2019 includes Illinois among 26 states currently or at-risk of experiencing an HIV outbreak due to injection drug use.
Melissa Graven, the communicable disease supervisor at the McLean County Health Department, said around the time of the epidemic in Austin, Ind., Illinois health departments saw a 50% reduction in funding for HIV prevention grants, and many smaller health departments across the state closed their doors shortly after.
“Indiana specifically had a lot of local health departments in that area close, and then the opioid epidemic hit and flourished ... so what happened in Indiana was something we all were worried about possibly happening (here),” she said.
Rural McLean County didn’t see a rise in new HIV cases, and still hasn’t, according to the latest IDPH numbers out last January.
McLean is one of 15 counties included in the IDPH’s “Region 2.”
Deric Kimler of Central Illinois Friends explained there are a significant number of HIV-positive individuals living in the region’s rural communities.
“In this region it’s split up in about thirds,” he said. “So a third of people with HIV are here in Peoria. Another third of people living with HIV are in the Bloomington/South Peru area. And the other third in this region is all the rural areas spread out amongst 15 counties. And so the population’s there.”
If Illinois wants to meet its Getting to Zero targets, he said, “It is very important for us to focus on rural America, when it comes to people living with HIV, because that is where the least resources are.”
The least resources, and unique barriers to care that put rural communities across Central Illinois at risk.
Of the 15 counties covered in Region 2,” only McLean and Peoria County Health Departments currently receive HIV prevention grants, explained Pam Briggs, Director of Positive Health Solutions.
Headquartered in downtown Peoria, her agency is the region’s only HIV specialty clinic, managing the labs, testing, medications and guidance HIV-positive patients need to become and remain undetectable.
Briggs pointed to an area shortage of primary care providers, as well as a lack of primary care providers in Bloomington-Normal offering disease management services for HIV-positive patients.
But not every patient in the region who needs those services can reach the Peoria clinic.
“One of the number one issues and barriers to care is transportation,”she said.
Briggs said patients enrolled in managed care through Medicaid do qualify for free transportation, “But we are finding that that is not consistent, and it is not always available.”
Her agency can also provide bus passes and gas cards to patients enrolled in the Health Resources and Services Administration’s Ryan White program.
As for other patients, she said, “If we have individuals who have no one that can transport them to a medical appointment and let’s say they’re in Warren County, we’ve got a real issue with getting them into care or a consistent medical appointment care plan and treatment plan.”
It’s one reason Positive Health Solutions operates a satellite clinic twice a month at the McLean County Health Department: It’s easier for rural residents in McLean and surrounding counties to travel to Bloomington than Peoria for care.
Positive Health Solutions also partners with Central Illinois Friends to bring services directly to rural communities. Between 12 and 15 times a year, staff at Central Illinois Friends take government mobile units to provide on-site STI and HIV testing throughout the region.
Kimler said the agency is looking into a capital campaign to purchase its own mobile unit to expand their presence in Bloomington-Normal.
But mobile units are expensive, and require a lot of upkeep.
The agency has already gone from a staff of 4 to a staff of 15 in 3 years to reach its current service level.
But Kimler said the additional resources are worth it to provide a safety net agency to fill in the gaps of the healthcare system; gaps that are felt especially by rural Illinoisans, not only because their communities lack the financial resources of their urban counterparts.
“Our rural cities, towns if you will, they’re not receiving the same education that the urban areas are when it comes to sexual health,” he explained.
Through a partnership between Central Illinois Friends and the Holt Center for Healthy Living, students in Peoria’s District 150 schools receive evidence-based, comprehensive sex education beginning in 7th grade.
“That’s the only school district in this entire region that’s getting that style of education,” Kimler said. “Most school districts, which means all of your rural—Bloomington, LaSalle, Canton, Galesburg and all the rural as well—are getting variations of that sex and gender talk.”
That includes abstinence-only sex education.
“And we know this not to work,” he said. “The seven states in the entire United States that lead in STI rates are the 7 states that are providing abstinence-only education in their public schools.”
And while abstinence is the best way to prevent contracting STIs, Kimler said abstinence-only education is not a realistic approach.
“98% of the population is going to have sex at some point, and they should be educated before they do it,” he said. “They should know what to look out for, how to practice safely, how to prevent pregnancy. We’re not just talking about HIV and AIDS when we’re talking about education, we’re talking about safe sex as a whole.”
Why the difference in approach between Peoria and surrounding communities?
“There are no agencies like Central Illinois Friends or like Holt Center or like Prairie Pride Coalition in Bloomington, that are out in those communities able to help, because we’re not invited,” he said.
Kimler explained stigma against these agencies’ approach, namely offering an alternative to abstinence only education, creates a barrier to entry into these communities.
“So other peoples’ values are getting in the way of us to provide comprehensive sexual health education to people who need it,” he said.
Melissa Graven of the McLean County Health Department said that same stigma can make it difficult to hold testing events in rural communities.
“A lot of people aren’t going to show up, probably because they know everybody that’s going to be there,” she said. “They may not want to get tested. So what we try to do is do as many presentations as possible in those communities...because we want them to know, hey, we’re here, you can come in and get tested regardless of insurance.”
Pam Briggs of Positive Health Solutions said both she and Kimler do their best to connect with rural community agencies and health departments about their services.
“So as we get our names out there and we saturate the communities in our 15-county area with, this is what we can do, and this is the information we can train you on and educate you on and provide the resources for individuals who are infected with HIV...if they reach back and ask us for something, some service, some event, we will go to them and we will do that,” she said.
Should rural communities in the region experience a jump in new HIV cases, Kimler said Central Illinois Friends is prepared to take action.
“So it is the goal of Central Illinois Friends to hit any kind of epidemic, well any kind of resurgence of a virus before it becomes an epidemic status,” he said. “If we see that there’s a rise in HIV rates in Stark County, we’re going to make friends in Stark County, and we’re going to take our mobile unit, and we’re gonna do pop-up clinics, and we’re going to do as much testing as we can in those areas.”
Graven too said she’s confident in the McLean County Health Department’s ability to respond to any rise in HIV.
“I have to say, we’ve got a really great relationships with a lot of, with the FQHC in town (Chestnut Health Systems), Community Health Care Clinic, Illinois State University, Illinois Wesleyan, that I feel like we’re better prepared and in a better situation that if we did see a rise in HIV,” she said. “We’d have a lot of help in getting the word out, making sure people get tested, and access, making sure people can go to where the services they need.”
But Kimler said there’s an easier way to prevent that scenario in the first place: taking care of people living with HIV.
“Right now you’re hearing about the coronavirus, you think, oh, somebody’s sick in Chicago, and everyone’s concerned about how not to get everyone else sick...only the hospital’s working on the patient,” he said. “But in HIV, that is very important. The patient is your number one concern. If you take someone living with HIV, and you get them in care, and you take care of them, and they become undetectable, there is zero chance of transmission”
And focusing on individuals already living with HIV doesn’t just mean treating them; it means involving them in the discussion.
“You will not get to zero without people living with HIV being a part of that,” Kimler said. “There is nothing about us without us. You have got to listen to the voices who need it instead of people behind closed doors making decisions for people who need it the most...so the best thing Illinois can do is stop pretending that we know what’s best for our constituents and start listening.”
Listen, he said, and remember that people living with HIV are just that: people.