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AIDS organizations were decades ahead of other groups in addressing health disparities and barriers.
In the early years of the HIV/AIDS epidemic, patients often were marginalized for their sexuality, IV drug use, race — and for the disease itself. Often, they were poor and lived in places where they could not access optimal health services.
AIDS service organizations helped patients meet their basic needs of food, medicine, medical care, transportation, and housing, says Willow Yerxa, MSW, director of mental health and case management for Health Equity Alliance (HEAL) in Ellsworth, ME.
HIV patients might have to travel a few hours to see a specialist. In Maine, this can be a huge barrier — particularly in the winter with snowstorms.
“We’re lucky in Maine that we have a really great Medicaid waiver program for HIV-positive people, and it provides access to medical transportation,” Yerxa says. “If we can find a provider in the patient’s area, we’ll always push for that. But in the meantime, we will help them work within the structure we have.”
HEAL has evolved since its roots as an AIDS service organization, Yerxa notes.
“We moved into a larger space last summer, and we have the Health Equity Center, which is available for allied organizations to use for training or monthly meetings,” she says.
Since antiretroviral treatment has turned HIV into a chronic disease, and people with HIV can live longer than before, the health issues and needs are changing.
“Over half our HIV folks are 50 years or older, and that has its own challenges,” she says. “For folks diagnosed in the 1980s and 1990s, they might have thought they’d have six months to live, and now they’re turning 75.”
Because there is a growing number of older HIV patients, case management has to center around health disparities in nursing homes, Yerxa says.
“We have to make sure those providers know enough about HIV to take good care of folks because it’s shocking, sometimes, when nurses and doctors have a lack of knowledge about HIV,” she says. “Case managers have a role in identifying some of the friendlier practices. They might find that one doctor’s office needs a little more education about HIV, and case managers can go out into nursing homes or doctor’s offices to give them basic training on the populations we serve, including transgender.”
Case managers also can educate staff at nursing facilities and other healthcare settings.
“They provide PowerPoint presentations,” Yerxa says. “You could have a training session as short as two hours, although most are for a whole day.”
The rest of their educational work concerns building relationships and providing local advocacy.
“We’re out there all the time, talking about it,” Yerxa says. “We have gender pronoun information on cards, talking about why it’s important.”
For example, a case manager’s email and business card might say that she uses the pronouns “she” and “her.”
“We invite folks to tell us which pronouns they prefer, to make sure people feel safe and welcome,” Yerxa says.
Case management of HIV patients often centers around economic issues.
“Financial issues are always huge because that impacts everything else,” Yerxa says. “It impacts whether you can pick up your medications or whether you have a safe, stable place to get letters from your provider or to get phone calls.”
Case managers always are finding ways to fill those gaps, relying on state resources when possible. For instance, Maine will provide transportation for patients to go to the doctor or pharmacy, she says.
“We can’t level the playing field, especially socioeconomically, but the more we can take those critical concerns, help with basic needs, and make sure people have access to things they need to be healthy, the more it helps with equity,” Yerxa says.
HIV patients also need emotional support, and Yerxa finds that support groups are very powerful and important to health equity.
“We have these support groups that we use as a tool to try to reduce stigma and to foster connection, helping people build natural support,” she says.
People can share their medication experiences, recommend providers, and offer to help each other with rides to appointments.
“We had a health conference just for HIV-positive clients, and having people in the room who have been living with HIV for 20 or more years is helpful to people who have had HIV for a year,” she explains. “They come there to share their experience and talk about their biggest challenges, and we could never do as good a job as they do.”
HIV patients often belong to marginalized communities and have lost connections to their own families, so support groups provide them with a chosen family, Yerxa says.
“It’s not unusual to have people who have no one within 50 miles who aware of their status, so they don’t get support locally,” she says.
Case management that includes support groups, peer counselors, and/or educational sessions and conferences can help meet that need for support.
“When they are here, they can talk about their challenges related to HIV,” she says.
“It’s a really positive thing for them, as seeing someone who is healthy can be incredibly powerful for someone who is newly positive,” Yerxa explains. “That sense of connection and belonging is huge, when we’re talking about people being able to stay healthy and eliminate some of those gaps between marginalized populations and the rest of society.”
Financial Disclosure: Author Melinda Young, Editor Jill Drachenberg, Editor Jonathan Springston, Editorial Group Manager Leslie Coplin, Accreditations Manager Amy Johnson, MSN, RN, CPN, and Nurse Planner Margaret Leonard report no consultant, stockholder, speaker’s bureau, research, or other financial relationships with companies having ties to this field of study.