This is a companion story to a WGLT article published Friday about the barriers to care facing HIV-positive patients in rural Illinois.
Access to care can be a challenge for HIV-positive patients living in rural parts of central Illinois, especially finding transportation to appointments.
But even in more urban centers like Bloomington-Normal, HIV care options are limited. Those on the front lines say few primary care physicians are equipped (or willing) to take on HIV-positive patients. In turn, they’ve seen some HIV-positive patients ask their infectious disease specialists for help with minor issues, like earaches, that a primary care doctor normally treats.
“It puts patients in a really terrible place,” said Len Meyer, downstate community engagement manager at Planned Parenthood of Illinois, which offers HIV referral services. “There are a lot of health disparities when we look at HIV-positive patients. And because those resources are lacking, it makes it even harder to be treated—and treated respectfully as a patient.”
Some of this is by design. After a new HIV-positive diagnosis, patients are typically referred to their regional Illinois HIV Care Connect network hub. Those living in Bloomington-Normal would be assigned to the Region 2 hub: Peoria-based Positive Health Solutions. Its wide range of services include eight infectious disease doctors who rotate through its Peoria clinic.
There are between 800 and 900 patients in Region 2’s 15-county area, and only about 150 of those have elected to see a provider other than Positive Health Solutions, said Pam Briggs, regional project director for Illinois HIV Care Connect in Peoria.
“I don’t know that there are any providers in Bloomington who are willing to manage patients with HIV. If they are willing, I’d love for them to reach out to me,” Briggs said.
Briggs has some theories as to why patients don’t have more options here in Bloomington-Normal. While HIV emerged as a novel public health threat in the 1980s, it’s now widely considered a treatable, chronic disease.
“I’m very, very suspect of whether there is still the stigma when it comes from some health care providers, and the lack of understanding HIV treatment, and not being interested in treating, or having some reason why they just won’t entertain or learn about the treatment of HIV,” Briggs said. “I don’t know what all the answers are, but I know that we get a lot of referrals.”
There were around 109 McLean County residents living with non-AIDS HIV as of January 2019, according to the Illinois Department of Public Health.
Positive Health Solutions does provide satellite services in Bloomington-Normal twice a month. Other than that, most patients would have to travel to Peoria for care.
“Personally, I think it would ideal to have my primary care doctor handling everything about me,” Briggs said. “It’s very important for my primary care physician to have the whole picture of me, and to be able to manage the different elements I’ve got going on in my life.”
Bloomington-Normal is better equipped on the prevention side. The McLean County Health Department has an HIV prevention counselor and offers a STD/HIV walk-in clinic on Tuesdays. Planned Parenthood’s Bloomington health center also offers PrEP (pre-exposure prophylaxis), a daily medication that is highly effective for preventing HIV from sex or injection drug use.
Still, Meyer said “there aren’t a lot of HIV care pieces in McLean County.”
“A lot of it has to do with stigma, and the fact that HIV treatment (education) isn’t something that doctors are receiving regularly in medical school,” Meyer said. “So when we look at certain populations, like those who are HIV positive, folks that are in the LGBTQ community, those resources are small and minimal, because it’s not being taught in medical schools. So doctors are like, ‘I’m not sure I feel comfortable with doing this particular care of someone.’ And so because of that, we don’t have a lot of resources in Bloomington-Normal.”
Dr. Paul Pedersen, a Bloomington doctor who is president of the Illinois State Medical Society board, pushed back on that point. He said many primary care doctors do have the background to do it.
“Whether or not it’s appropriate in all instances to treat patients who are HIV positive from an infectious disease point of view, and the variety of medications that are used … the knowledge base is adequate enough that if a primary care physician is interested and wants to develop that capability in his or her practice, it doesn’t require an infectious disease specialist to manipulate those medications. It’s pretty well-prescribed in this day and age,” Pedersen said.
The “constantly changing” world of HIV care may also be a barrier for primary care doctors, said Melissa Graven, communicable disease supervisor at the McLean County Health Department.
“It is something you have to stay up on,” Graven said. “If you’re looking at it from (the perspective) of a primary care family doctor, when you’ve got to know all these other diseases, I can understand why (you’d think) it’s better for the patient if they see somebody who specializes in HIV, because I certainly don’t want to mess up anything for you.”
Pedersen said he is troubled by a trend of LGBTQ patients—even those who don’t have HIV—deciding to see infectious disease specialists for their primary-care needs.
“What is it that we’re not providing, or seemingly not providing, to patients who have a different need than other parts of our patient population?” Pedersen said.
He has a theory as to what’s going on.
“I think it’s about acceptance. There’s a belief that their personality may be more acceptable in an HIV clinic, even if they’re not infected. And that’s too bad,” Pedersen said. “That’s something we as a medical community, especially in Bloomington-Normal, ought to take into consideration.”
Champaign-Urbana is seeing a similar trend.
In that region, the Champaign-Urbana Public Health District is the lead HIV care agency. It contracts with Carle health system, which has four full-time infectious disease physicians, plus a part-time nurse practitioner who solely focuses on HIV.
“Sometimes our infectious disease doctors, and especially our nurse practitioner, will end up doing more primary care for the client when they really don’t have the time to be doing that,” said Teresa Castaneda, case coordinator for the Champaign-Urbana Public Health District.
Bloomington-Normal has lost several infectious-disease specialists in recent years, Castaneda said. In turn, Champaign-Urbana has seen an influx of people coming from Bloomington-Normal trying to get care, she said. They would be referred to Peoria for case management.
“There needs to be more primary care providers that are more educated on HIV,” Castaneda said.
That education can develop over time. That’s what happened in Quincy, in western Illinois.
Patients in Quincy are covered by the sprawling Region 3 of the HIV Care Connect network. Its hub location is at the Southern Illinois University School of Medicine in Springfield.
Quincy patients have their own medical case manager nearby, but there’s no infectious-disease physician in their area.
“There has been before. They kind of come and go, and it’s hard for them to recruit (infectious disease) physicians,” said Marcy Ashby, project director for Central Illinois Care Connect.
So Quincy patients are seeing primary care doctors—out of necessity. “There is some expertise that is being developed and has developed in that region in particular,” Ashby said.
Melissa Graven with the McLean County Health Department said that’s where her agency can step in and work with other care agencies to build out that expertise.
“How can we build the depth of people feeling comfortable in managing HIV? What can we do? How can we help, so that there are more physicians that people can access for their HIV care?” Graven said. “I’m sure there are providers in town that would be willing to do it.”