Equitas provides all kinds of services to its patients, including medical, pharmacy, behavioral health, dentistry, HIV supportive services, PrEP health navigation, HIV/STI testing, harm reduction and survivor support. Equitas in Athens serves the following counties: Athens, Belmont, Coshocton, Gallia, Guernsey, Hocking, Jackson, Lawrence, Meigs, Monroe, Morgan, Muskingum, Noble, Perry, Pike, Ross, Scioto, Vinton and Washington.
The Ryan White Part C Grant, better known as the “Linkage to Care Grant,” helps cover 13 counties in Ohio, seven in Kentucky and five in West Virginia.
Health care, by its definition, helps improve one’s quality of life. Daily, people pass different health care establishments, like doctor’s offices, clinics and health centers. However, health care in Southeast Ohio isn’t as easily accessible, creating several barriers.
Barriers: What do barriers look like in Southeast Ohio?
Transportation creates a barrier to care in Appalachia; and driving miles and miles can be cumbersome for individuals, especially when they don’t have the means for transportation, Aaron Wamsley, southeastern prevention programs manager at Equitas, said.
“We know that those individuals may not have access to a car, friends, transportation, and in Athens, there’s no public transportation to even get them that far to the medical console,” Wamsley said.
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Aaron Wamsley works as the southeastern prevention programs manager at Equitas. Wednesday, March 22, 2023 at Equitas in Athens.
Jordyn Wells, a linkage to care specialists for Equitas in Portsmouth, Ohio, agrees that transportation creates a barrier to accessible health care. In Portsmouth, Wells said, people are not well-informed, especially when it comes to subjects that are STI-related or HIV-related.
“People just don't get it (HIV), and they really only think that one specific group can get it … there's also a multitude of other groups that can,” Wells said. “Education-wise, (there) is a huge barrier. Stigma is a huge barrier. People really are out there believing that they're totally free of it, that they can't get it because they're not part of the LGBTQ community…. In reality, it's a blood borne pathogen, so anyone can really get it.”
“Education-wise, (there) is a huge barrier. Stigma is a huge barrier. People really are out there believing that they're totally free of it, that they can't get it because they're not part of the LGBTQ community…. In reality, it's a blood borne pathogen, so anyone can really get it.” —Jordyn Wells, linkage to care specialists for Equitas in Portsmouth, Ohio
HIV is a virus that attacks cells that help the body fight infection, making a person more vulnerable to other infections and diseases, whereas AIDS is the late stage of an HIV infection that occurs when the body’s immune system is badly damaged because of the virus, according to HIV.gov.
Stigma and misunderstanding of HIV has created a barrier for people and even makes people shy away from health care, Wells said.
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Jordyn Wells works as a linkage to care specialists for Equitas in Portsmouth, Ohio. Wednesday, March 22, 2023 at Equitas in Athens.
“The terms that doctors use … it's a hindrance, and people tend to not go and get health care because they're like, ‘They're going to talk down to me at the doctor’s, they're not going to actually help me, they're not going to understand me, they're not going to listen to me.’ There's a shyness of actual health care in this area where people just (say), ‘No, I don't need the doctor. I'm good. I don't need help,’” Wells said.
Urban vs. Rural: What’s the difference?
Genesis Vaughn, a prevention health navigation manager at Equitas, works in Columbus and has experienced noticeable discrepancies between Columbus and Athens when it comes to conversations about health care.
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Genesis Vaughn is a prevention health navigation manager at Equitas and works in Columbus. Wednesday, March 22, 2023 at Equitas in Athens.
Access makes a huge difference when it comes to care in rural versus urban settings. Vaughn said Columbus has two Equitas medical centers, making it easier to find care and obtain an appointment.
She said it’s also easier to ask questions without fear of animosity in Columbus, and she has heard that possibilities of microaggressions, homophobia or ostracization within medical centers are a worry for clients in Southeast Ohio.
“If I go to a certain hospital or medical center, how am I going to be treated if I ask about PrEP? So, I would definitely say access is kind of a big component of that,” Vaughn said.
Wamsley believes there are many factors that put people at a disadvantage in Southeast Ohio that people don’t even recognize in bigger cities.
“It’s perpetuated, the stigma of HIV, the stigma of having an addiction,” Wamsley said.
There is a lack of providers in Region Six, Wamsley said. Specifically, there is a lack of providers who are prescribing antiretrovirals in the surrounding region. Wamsley said the closest HIV provider to prescribe medication to someone who needs it to live a long life is about 45 minutes to an hour away.
“There's also a disadvantage in education,” Wamsley said. “When I go to syringe exchange programs, oftentimes I am hearing ‘I'm not gay, I can't get HIV,’ but they're out of a syringe exchange program, and we know HIV is a blood borne pathogen. Therefore, if you're using the same needles as somebody, you're increasing your chances of getting HIV substantially. And it's baffling that there is a lack of education.”
If there is no education provided to those in a syringe exchange program, it will directly affect the community they are serving.
“I feel that most of the providers within the city limit would have at least some knowledge about better care for HIV management, rather than some individuals in Appalachia,” Wamsley said.
Urban cities notably have access to greater volumes of medical care, which creates apprehension in health care providers in rural areas to diagnose HIV to a patient when their focused-knowledge might be with Hepatitis C, Wamsley said.
A variety of barriers creates skewed perceptions of reality, introducing a stigma.
The Stigma: Why does it exist?
Rebecca Nelson is a non-medical case manager for Equitas in Athens and knows stigma resides in many, especially college students. Nelson said college students have struggled navigating their health because of the fear of being harassed when receiving health care from larger providers. Nelson said students are even apprehensive to try Equitas’ free HIV testing because of the fear of walking in the front door.
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Rebecca Nelson is a non-medical case manager for Equitas. Wednesday, March 22, 2023 at Equitas in Athens.
“Why is there stigma in 2023? I think you can look at the national stage for that. It starts from the top down,” Nelson said.
Anonymous, a local resident of Hocking County who is using a pseudonym on the basis of privacy, is living with HIV. However, being HIV positive does not define who Anonymous is.
“It's not something I talk to people about. I don't advertise it. I work pretty diligently to hide it, even from the family,” Anonymous said. “It's not something that I advertise because there is such a big stigma ... I don’t want to be treated differently.”
Southeast Ohio borders what is referred to as the “Bible Belt,” and Wells and Wamsley both agree this has something to do with the stigma that is felt when talking about HIV.
While working at a prevention program at a K-12 school in Portsmouth, Wamsley said students were giggling about the condoms, when in reality, they were trying to teach the students about STIs.
“When you can hear a 13 year old little boy say, ‘I've learned more from you in five minutes than I have in my health class for an entire year,’ that speaks volumes,” Wamsley said. “When push comes to shove, people are going to worship Jesus over providing prevention and preventative services.”
Learning about health care varies in all areas, which aids in creating and maintaining the stigma.
“We're in the Bible Belt, and people are uninformed and don't understand,” Wells said.
Anonymous agrees that there is a religious aspect to the education people receive about HIV.
“A lot of that is the politics of it and that touches on the religious aspect of it. It's that way, on purpose,” said Anonymous.
A lack of local news also affects the knowledge of people in Appalachia, Anonymous said.
“Look at local papers; they're almost gone, extinct, because … everything comes down to money,” Anonymous said. “‘There's no money in it, so we're just gonna close it,’ instead of (keeping) the benefit of what it does to the community.”
Benefiting a community and keeping them educated is important, Nelson, Anonymous, Wells and Wamsley all agree, but the lack of education deepens a barrier and upholds the preconceived notion about forms of health care. It can start early-on.
In 2017, the Centers for Disease Control and Prevention, or CDC, ran a summary report of state health education laws in Ohio. According to the report, which is the most recent on the CDC’s website and was last viewed in June 2018, there are no laws or regulations to inform students about HIV prevention.
The Process: How does one find care?
For some, like Salem Spinelli, a linkage to care specialist at Equitas in Athens, college meant having control and access to health care.
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Salem Spinelli is a linkage to care specialist at Equitas in Athens. Wednesday, March 22, 2023 at Equitas in Athens.
“I would say when I got to college, my freshman year of college, I came from a family who really didn't practice medicine, so I was very excited to have access to that,” Spinelli said.
Care looks different for everyone, and as a case manager, Nelson’s experience differs with every client. Case management involves the intake of the client, conduction of a needs assessment, service planning and monitoring and evaluation of the continuum of care. Case management is the core to a really big spider web, Nelson said.
“For someone living with HIV, and are just newly diagnosed that comes into our case management, it can be a little overwhelming to sort it all out and to reassure folks that it's going to be OK, you're going to have support,” Nelson said.
Equitas offers a lot of support and does a lot of linkage to care when connecting with people inside and outside the agency. For example, Nelson said, Equitas might refer someone who might be living with addiction or substance abuse concerns to other community agencies that specialize in addiction and substance abuse. Case managers wear multiple hats when meeting new clients and working with existing ones.
“I think for somebody that's new to HIV, and they're coming in on our caseload, I always tell people, we help put the pieces together for them,” Nelson said. “Imagine being diagnosed HIV positive and you're told, ‘You need to figure out your pharmacy, you need to figure out your insurance, you need to figure out who your HIV-specific doctors are going to be and, oh, here's about 20 different support groups all over the state.’ It's very overwhelming.”
All health care experiences can look different for everyone.
The Experience: Does every experience look the same?
“For me, staying in care means living,” Anonymous said.
Anonymous moved to Southeast Ohio after living on both coasts of the U.S., and it was undoubtedly a culture shock; things are more simple, more conservative and nothing has changed since the ‘80s, Anonymous said.
“For me, staying in care means living.” —Anonymous
Anonymous needed HIV services, and after a quick search, found Equitas. Though Anonymous is receiving the services needed to live, there is a drawback to Equitas.
“I feel just with what Equitas is doing in the community is a very positive thing; it's certainly needed,” Anonymous said. “They could be a little more client-oriented instead of agency-oriented. There's sort of a disconnect with the appearance of themselves and the clients themselves.”
Equitas is an agency serving a plethora of locations and operates out of Columbus, so when maintaining relationships with its clients, there is always a stumbling block, Anonymous said. However, Anonymous believes when it comes down to the care Equitas provides, it is a much needed health care organization.
For Spinelli, the journey to find care has not always been easy.
“I was the first person that my provider has started on hormones and her language choice, did not love (that),” Spinelli said. “Language choice is so important and I didn't feel like awesomely safe and comfortable. I think that's just like a choice that a lot of trans people have to make.”
Vaughn believes care in Athens seemed difficult to receive. She drove all the way from Athens to Columbus to receive care because she wasn’t sure if the providers in Athens could adequately provide care that would cater to her not only as a transgender person, but also as a Black transgender person.
However, Vaughn said a lot of people write off Appalachia as “backwoods and backwards,” but that is what makes it that much important to understand. There are plenty of people of color, queer people, transgender people and people at risk or living with HIV in Appalachia, said Vaughn.
“We cannot write off these areas,” Vaughn said. “These are people who are disproportionately affected by all of these disparities in terms of gender affirming care, or being able to receive gender affirming care, being able to access comprehensive care for HIV and HIV prevention.”
It’s important to know these things aren’t worlds away, Vaughn said.
Finding care is a journey in itself, but so is maintaining care.
PrEP, or pre-exposure prophylaxis, can reduce one’s chance of getting HIV from sex or injection. PrEP is for everyone, and can be taken by anyone if their health care provider sees fit.
However, it’s not just “taking a pill,” Anonymous said, it’s dealing with the emotions and difficult side effects that come with taking the medication.
“Even if you were on the early medications (other HIV drugs), (there can be) permanent damage to … your kidney function, I have friends that are dealing with kidney issues now from drugs that they've taken in the ‘80s,” Anonymous said.
AZT, the first drug to treat HIV prevention, caused life-altering side effects to the people who took it when it was still available. However, with today’s HIV drugs, there are other life-altering neurological effects that people have to potentially deal with, but for some, that’s the only way for survival.
Because of the weight people carry day-to-day, support groups, especially in rural areas, are important to build a support group of people that know exactly what each other are going through.
“A lot of times, that's the lightbulb where you're like, ‘It's not just me that's dealing with that,’” Anonymous said. “Even if it just be the smallest little issue, you’re like ‘Oh, my god, somebody else is dealing with that too, I thought it was just me, (and) it turns out to be a side effect of the medication.’”
Support groups are extremely vital and can be a bridge to staying in care.
The Steps: What’s out there?
“I feel like we missed a lot of opportunities with college students not utilizing PrEP. PrEP is not just an LGBTQ-opportunity. It's for everyone,” Nelson said.
More people need to know about PrEP, Nelson said. In Athens, PrEP can be accessed by setting up an appointment with Equitas and starting the process of health navigation with a member of Equitas’ team.
There are an abundance of resources through the front door of Equitas: Ohio LGBTQ Health Provider Guide, HIV resources, Equitas medical and counseling services, information on different support groups, POZ magazines and more.
Support groups at Equitas include, but are not limited to, InTrasition, for those in gender affirming medical and/or social transition or thinking about transition; Living Positively, an open group offering support, encouragement and dialogue for those living with HIV or AIDS; and Chosen Family, which offers LGBTQ+ affirming education, resources and support for family and friends of people who have a relationship with substance use.
Equitas works for its clients, and the staff works to build a relationship with everyone that walks through the front doors.
“When they don’t have family, we’re the family,” Nelson said.