Stigma keeps many from taking HIV test in USA
by Luella Brien 28th June 2005
Stigma. For some people, that six-letter word can mean the difference between life and death.
The stigma of HIV and AIDS has kept hundreds of thousands of people from getting tested for the disease. The U.S. Centers for Disease Control estimates that 180,000 to 280,000 people don't know they are HIV-positive, most because they refuse to take the diagnostic test.
‘The stigma is still huge, and more so in small towns,’ said Kathy Mackey of the Ryan White Program at Partnership Health Center in Missoula. ‘It's a huge issue.’ Mackey's program works with 264 patients statewide, a little more than half of them in western Montana, and was one of the sponsors of Monday's National AIDS Testing Day - an effort to convince more people to get AIDS tests.
As part of that effort, Mackey and others asked several AIDS patients to talk with the Missoulian about their disease. The earliest known case of HIV was from a blood sample collected in 1959 from a man in Kinshasa, in the Democratic Republic of Congo. No one knows how that man was infected, but genetic analysis of the blood sample suggested that HIV may have stemmed from a single virus in the late 1940s or early 1950s.
Nearly 60 years after the disease originated, it still carries a stigma, said Marjorie Dula, Missoula AIDS Council executive director. ‘The more educated people are, especially about transmission routes, the less likely they are to be stigmatized,’ she said.
Fifty-six percent of Montanans living with AIDS are gay; 46 percent of AIDS patients nationwide are gay, according to the CDC. Nationwide, 25 percent of HIV/AIDS cases are the result of intravenous drug use; the state of Montana links 12 percent of its AIDS cases to IV drug use.
Montana is a low-incidence state, with only 365 confirmed cases of HIV/AIDS. The problem is, with numbers that low, many people believe they can't get the disease, health care workers said.
‘In fact, the fastest growing group to be infected with HIV and AIDS is women,’ Dula said. Since most people associate having HIV/AIDS with being gay or a drug addict, people who are neither don't get tested, said Mackey.
That's exactly what Steve Davidson thought when he went in for an AIDS test in 1991.
‘From what I read, I thought since I'm not gay and not using drugs anymore, I'm safe,’ said Davidson, of Kalispell. ‘The nurse called and said, 'You're positive,' and she hung up.’
Davidson said the HIV diagnosis didn't change his life much. ‘It's like losing my hair. I mean I wish I had hair, but I've got to move on,’ he said. Every morning, Davidson wakes up and takes his AIDS medication. Then the 49-year-old immediately goes back to bed for a few hours. ‘Going back to bed helps me get through some of the medication's side effects,’ he said.
And the side effects of AIDS medications are brutal - nausea, diarrhea and extreme fatigue, but for Davidson they are worth it. Anything is better than dying. ‘My diagnosis was anything but a death sentence,’ he said.
Davidson, a former intravenous drug user, would do whatever he could to get high. He was a high-risk individual. Davidson was lucky. He didn't acquire the disease while he was shooting up with other addicts. And he stopped using drugs after being picked up by police for shoplifting and passing bad checks in 1986.
‘That gave me the opportunity to change direction,’ he said. After a long struggle, Davidson sobered up. Then in 1991, two years clean, he learned that he was living with HIV, the result of unprotected sex with an infected woman.
He moved to Montana from Texas in 1997, after spending his vacations in western Montana for three years running. ‘I gave everything away and moved up here,’ he said. He started medication in 1998, but stopped after less than a year because of the toll it was taking on his body.
In 2002, Davidson's white blood cell count was at AIDS levels, and he began taking an unorthodox version of the AIDS drug cocktail, which seems to be working well.
‘Most of the meds shut down my body,’ he said. ‘I've been trying all the combos, and the one that I'm on isn't really recommended.’ Davidson has diabetes and neuropathy, a painful numbness in his legs. His medications make him fatigued and lethargic, and he suffers from nausea. His disease causes his navel to bleed and he has random earaches. He also has a skin rash.
Through all of it, Davidson manages to stay upbeat. He plans to make a documentary about living with AIDS in Montana. ‘I want to give people with AIDS hope. I want it to be something uplifting,’ he said. He is also campaigning for a seat on the Kalispell City Council.
‘It would be nice to be elected and to serve the community,’ Davidson said. ‘I want to speak for disabled people and for seniors. I don't know if my AIDS status will be a help or a hindrance, but it will give a new voice to the City Council. Most importantly, I want people to know that Montana is prone to an epidemic,’ he said. ‘All it takes is for one person to infect a group of people and it can hit the heterosexual community hard.’
It takes only one sexual encounter, said Robert Blackwell, a Missoula man living with the disease. Blackwell, 51, loves to cook, but he can't do it for a living anymore. He was diagnosed with AIDS in 2002. He tested negative for the virus in 1997, but five years later went to the hospital with swollen hands and was admitted with pneumonia.
‘The doctors wanted to test me for HIV because of the type of pneumonia it was,’ he said. Their suspicions were correct. A year later, Blackwell moved to Missoula and is been a strong community voice ever since. Blackwell is pretty sure he knows who infected him, and he is sure he hasn't passed the disease on to anyone else. But AIDS has affected his life dramatically. He can no longer enjoy the things he used to, like cooking for a living. He wanted to move to Montana to start his own restaurant, but after his diagnosis he gave up on the idea.
‘A cook gets cut. I just couldn't risk it,’ he said. Blackwell sits on a statewide advisory council in Helena that works with AIDS prevention and education. He knows there is a stigma associated with AIDS but is open about his disease.
He wants Montanans to know what's out there. He wants people to know he had to change his entire life because of one sexual encounter.
Blackwell wants people to understand that he lives his entire life focused on his disease. He wants people to know that it can happen to a straight man in a low-risk group. ‘People think that because Montana is a low-risk state they are safe,’ he said, ‘but I've got news for them. It can happen.’
‘It's made a big change in my life. I have no problem speaking out about it so people will be more aware,’ Blackwell said. ‘You have to live your life around the disease instead of living your life the way you want to.’ Blackwell plans to take a 17-month intensive writing course online so he can begin writing his memoirs.
He works with the Missoula AIDS Council to help reduce the stigma associated with HIV/AIDS. He speaks at the University of Montana and hopes to begin speaking in local high schools. ‘When students see a real-life person living with this disease, it creates compassion and the realization that it is in Montana,’ Dula said. ‘We had volunteers speak to over 1,500 high school and college
students.’
Blackwell wants to help implement a mentoring program for newly diagnosed people. ‘If I can help someone get through the trauma of diagnosis, then that's a positive for me,’ he said.
Source: Stigma- AIDS eForum
Online at: http://www.missoulian.com/articles/2005/06/28/news/local/news03.txt
Stigma. For some people, that six-letter word can mean the difference between life and death.
The stigma of HIV and AIDS has kept hundreds of thousands of people from getting tested for the disease. The U.S. Centers for Disease Control estimates that 180,000 to 280,000 people don't know they are HIV-positive, most because they refuse to take the diagnostic test.
‘The stigma is still huge, and more so in small towns,’ said Kathy Mackey of the Ryan White Program at Partnership Health Center in Missoula. ‘It's a huge issue.’ Mackey's program works with 264 patients statewide, a little more than half of them in western Montana, and was one of the sponsors of Monday's National AIDS Testing Day - an effort to convince more people to get AIDS tests.
As part of that effort, Mackey and others asked several AIDS patients to talk with the Missoulian about their disease. The earliest known case of HIV was from a blood sample collected in 1959 from a man in Kinshasa, in the Democratic Republic of Congo. No one knows how that man was infected, but genetic analysis of the blood sample suggested that HIV may have stemmed from a single virus in the late 1940s or early 1950s.
Nearly 60 years after the disease originated, it still carries a stigma, said Marjorie Dula, Missoula AIDS Council executive director. ‘The more educated people are, especially about transmission routes, the less likely they are to be stigmatized,’ she said.
Fifty-six percent of Montanans living with AIDS are gay; 46 percent of AIDS patients nationwide are gay, according to the CDC. Nationwide, 25 percent of HIV/AIDS cases are the result of intravenous drug use; the state of Montana links 12 percent of its AIDS cases to IV drug use.
Montana is a low-incidence state, with only 365 confirmed cases of HIV/AIDS. The problem is, with numbers that low, many people believe they can't get the disease, health care workers said.
‘In fact, the fastest growing group to be infected with HIV and AIDS is women,’ Dula said. Since most people associate having HIV/AIDS with being gay or a drug addict, people who are neither don't get tested, said Mackey.
That's exactly what Steve Davidson thought when he went in for an AIDS test in 1991.
‘From what I read, I thought since I'm not gay and not using drugs anymore, I'm safe,’ said Davidson, of Kalispell. ‘The nurse called and said, 'You're positive,' and she hung up.’
Davidson said the HIV diagnosis didn't change his life much. ‘It's like losing my hair. I mean I wish I had hair, but I've got to move on,’ he said. Every morning, Davidson wakes up and takes his AIDS medication. Then the 49-year-old immediately goes back to bed for a few hours. ‘Going back to bed helps me get through some of the medication's side effects,’ he said.
And the side effects of AIDS medications are brutal - nausea, diarrhea and extreme fatigue, but for Davidson they are worth it. Anything is better than dying. ‘My diagnosis was anything but a death sentence,’ he said.
Davidson, a former intravenous drug user, would do whatever he could to get high. He was a high-risk individual. Davidson was lucky. He didn't acquire the disease while he was shooting up with other addicts. And he stopped using drugs after being picked up by police for shoplifting and passing bad checks in 1986.
‘That gave me the opportunity to change direction,’ he said. After a long struggle, Davidson sobered up. Then in 1991, two years clean, he learned that he was living with HIV, the result of unprotected sex with an infected woman.
He moved to Montana from Texas in 1997, after spending his vacations in western Montana for three years running. ‘I gave everything away and moved up here,’ he said. He started medication in 1998, but stopped after less than a year because of the toll it was taking on his body.
In 2002, Davidson's white blood cell count was at AIDS levels, and he began taking an unorthodox version of the AIDS drug cocktail, which seems to be working well.
‘Most of the meds shut down my body,’ he said. ‘I've been trying all the combos, and the one that I'm on isn't really recommended.’ Davidson has diabetes and neuropathy, a painful numbness in his legs. His medications make him fatigued and lethargic, and he suffers from nausea. His disease causes his navel to bleed and he has random earaches. He also has a skin rash.
Through all of it, Davidson manages to stay upbeat. He plans to make a documentary about living with AIDS in Montana. ‘I want to give people with AIDS hope. I want it to be something uplifting,’ he said. He is also campaigning for a seat on the Kalispell City Council.
‘It would be nice to be elected and to serve the community,’ Davidson said. ‘I want to speak for disabled people and for seniors. I don't know if my AIDS status will be a help or a hindrance, but it will give a new voice to the City Council. Most importantly, I want people to know that Montana is prone to an epidemic,’ he said. ‘All it takes is for one person to infect a group of people and it can hit the heterosexual community hard.’
It takes only one sexual encounter, said Robert Blackwell, a Missoula man living with the disease. Blackwell, 51, loves to cook, but he can't do it for a living anymore. He was diagnosed with AIDS in 2002. He tested negative for the virus in 1997, but five years later went to the hospital with swollen hands and was admitted with pneumonia.
‘The doctors wanted to test me for HIV because of the type of pneumonia it was,’ he said. Their suspicions were correct. A year later, Blackwell moved to Missoula and is been a strong community voice ever since. Blackwell is pretty sure he knows who infected him, and he is sure he hasn't passed the disease on to anyone else. But AIDS has affected his life dramatically. He can no longer enjoy the things he used to, like cooking for a living. He wanted to move to Montana to start his own restaurant, but after his diagnosis he gave up on the idea.
‘A cook gets cut. I just couldn't risk it,’ he said. Blackwell sits on a statewide advisory council in Helena that works with AIDS prevention and education. He knows there is a stigma associated with AIDS but is open about his disease.
He wants Montanans to know what's out there. He wants people to know he had to change his entire life because of one sexual encounter.
Blackwell wants people to understand that he lives his entire life focused on his disease. He wants people to know that it can happen to a straight man in a low-risk group. ‘People think that because Montana is a low-risk state they are safe,’ he said, ‘but I've got news for them. It can happen.’
‘It's made a big change in my life. I have no problem speaking out about it so people will be more aware,’ Blackwell said. ‘You have to live your life around the disease instead of living your life the way you want to.’ Blackwell plans to take a 17-month intensive writing course online so he can begin writing his memoirs.
He works with the Missoula AIDS Council to help reduce the stigma associated with HIV/AIDS. He speaks at the University of Montana and hopes to begin speaking in local high schools. ‘When students see a real-life person living with this disease, it creates compassion and the realization that it is in Montana,’ Dula said. ‘We had volunteers speak to over 1,500 high school and college
students.’
Blackwell wants to help implement a mentoring program for newly diagnosed people. ‘If I can help someone get through the trauma of diagnosis, then that's a positive for me,’ he said.
Source: Stigma- AIDS eForum
Online at: http://www.missoulian.com/articles/2005/06/28/news/local/news03.txt
posted by AIDS-Care-Watch at 6:25 pm
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