Filed under: HIV/AIDS
When she was a young resident at New York City's Harlem Hospital in the 1980s at the height of the AIDS epidemic, Dr. L. Jeannine Bookhardt-Murray (pictured right) longed to know and remember her patients, many of whom died not long after they entered the hospital.
"I was a young doctor. You finish medical school with the idea that you are going to go out and save the world and suddenly you find yourself in a situation where there is absolutely nothing you can do except the best you can do. I used to feel a little hopeless, a little helpless," said Bookhardt-Murray.
She began writing intimate details about her patients on index cards in an effort to get to know them better:
"What helped me through it was just to get to know my patients. Even though I knew most of them would die I would find time to sit with them and talk with them and really understand who that person was. During those years I would keep little 3x5 cards. I'd write every patient down and everything I learned about that patient on there because I never, ever wanted to forget what that experience was like."
Twenty-five years later, those days are over. As the Medical Director at Harlem United, a wholistic healthcare center that teaches prevention and provides treatment to those with HIV/AIDS, Bookhardt-Murray has a long-term relationship with many of her patients because of antiretroviral medications that reduce the amount of HIV virus in people's bodies, allowing them to lead a normal life.
"We know now that people will live a normal life span. They won't die from AIDS if they are taking their medications. They will die from the other things we all die from, but they won't die from AIDS," she said.
Despite the progress in medications, the HIV/AIDS rate among African Americans is higher than ever.
Blacks make up only 13 percent of the population but accounted for almost almost half, or 46 percent, of the people living with the disease. In 2006, black men made up two-thirds of all new infections among blacks and the new infection rate for black women was 15 times higher than that of white women.
In many ways, said Bookhardt-Murray, the high rates of infection may be related to the stigma that still exists in the black community. It's a stigma that hasn't lessened since those difficult days at Harlem Hospital.
In the National HIV/AIDS Strategy released by the Obama Administration this summer, addressing the stigma associated with HIV was one of the main policy recommendations.
According to the report:
The stigma associated with HIV remains extremely high and fear of discrimination causes some Americans to avoid learning their HIV status, disclosing their status, or accessing medical care.7 Data indicate that HIV disproportionately affects the most vulnerable in our society-those Americans who have less access to prevention and treatment services and, as a result, often have poorer health out- comes. Further, in some heavily affected communities, HIV may not be viewed as a primary concern, such as in communities experiencing problems with crime, unemployment, lack of housing, and other pressing issues.
It's what Bookhardt-Murray witnessed in the African-American community.
There are stigmas in the black community surrounding all sorts of issues, such as diabetes, cancer and mental illness.
"It's just cultural in African-American communities. We don't talk about what we have. That great stigma has just carried over to HIV and AIDS, which has the worst stigma of all. The stigma is so bad that now even today when someone dies of AIDS, the family would rather say they died of cancer," said Bookhardt-Murray. "Some have taken it back to slavery times when there was a lot of stigma around things. We weren't supposed to talk about anything. We were supposed to be secretive about many things. We just don't talk about these bad things, but they are happening all around us."
And that is endangering a new generation.
"Our transmission rates in the African-American communities have not decreased that much and some of that may be from complacency. People think, 'Well, if I get the infection, I'll just take medications.' I'll talk to young people and they say, 'Well, everyone around me has HIV so what's the big deal? I'll just take the medications,'" said Bookhardt-Murray.
"But it's not that simple. When we are doing prevention work, I always tell people the pills are one thing but the pills don't treat the mental anguish that comes along with having an HIV infection. The great sense of guilt and depression and dejection and isolation, that overwhelming sense. The pills don't treat that. That becomes now the hardest thing for us to treat in people who are doing fine on the medication. We really need to pay attention to the mental affects of the disease."
Part of that effort is doing a better job of teaching young people about the consequences of their actions.
"People need to take great responsibility for their bodies and the situations they put themselves into. They need to relly think about the consequences of their actions. Everything we do has a consequence. If I go out and cross the street, it has a consequence. If I cross while the light is red, I might get hit by a car, right, so I wait until it's green. If it's green and I cross, I might still get hit by a car, but it's less likely," said Bookhardt-Murray. "They are experimenting with sex at very young ages these days, and they don't understand the consequences. We've got to help them try."
Beyond that, Bookhardt-Murray says she wants the disease to go away for good and she is optimistic about that happening:
"I want to see a cure during my lifetime. Two things I've hoped to see during my lifetime: An African-Americn president and a cure for AIDS. I never thought I would see it in the order I've seen it. I always thought a cure from AIDS would come first. I'm still waiting and I am convinced I will see a cure during my lifetime," said Bookhardt-Murray.
"I just can't tell you how sick of death I am. The whole illness and all of the issues that come with HIV and AIDS; I want them to stop."