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Care coordinator describes alienation, financial woes and health struggles that people face
THURSDAY, Dec. 1 (HealthDay News) -- For many it's a good news/bad news scenario.
People with HIV/AIDS are living longer and healthier lives than ever before, but they still have a chronic disease that's potentially fatal and carries a heavy stigma, said Jorie Barna, a care coordinator for the AIDS/HIV Services Group in Charlottesville, Va.
Barna, who lived in San Francisco during the 1980s and 1990s, said she saw the debilitating and deadly toll that HIV/AIDS took before the development of lifesaving antiretroviral medications.
"Living with HIV today is very manageable," said Barna, 43, who has a case load of 50 patients whom she monitors. "If somebody were to take care of themselves, eat well, keep their stress levels down, exercise regularly and take their medications, they could live long lives. I think in another decade, living with HIV will be like diabetes. You just have to take care of yourself."
Despite the medical advances, however, the mental toll that HIV/AIDS takes on people remains strong, Barna said, particularly in less-urban parts of the country.
"Stigma is still huge, huge here," she said. "A lot of people still associate HIV and AIDS as being a gay disease, which is not true at all. A lot of my straight men struggle because they don't want to be seen as homosexual."
Also, many of the people Barna helps were already at risk for infection because of other conditions.
"The issues that originally put them at risk for HIV infection have not been addressed," she said. "They're still struggling with mental health or substance abuse. They may be taking their medications and their HIV is stable, but they have other problems."
In addition, HIV/AIDS can have a severe financial impact on people, particularly if their infection was detected late and they've been incapacitated by it.
"People go on disability because they are too ill to work, but there's less and less out there for them," Barna said. "The government funding is drying up. It's hard to find affordable housing. There's no such thing as public transit here in Charlottesville. It's financially a huge challenge."
People with HIV/AIDS also come under additional stress from alienation and lack of affection, she said.
"It's hard on their families. It's hard on them," Barna said. "A lot of people feel they can't share their status with anyone. I have a lot of people who avoid physical intimacy, period, because they are afraid of disclosure. They are isolated and alone."
All of this adds to the tough medical struggle that HIV/AIDS patients face in dealing with their chronic illness.
"They might be physically stable enough, but they are still struggling emotionally, financially and psychologically," she said.
A companion article offers more on AIDS research.
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