In Pittsburgh, more education urged about AIDS and HIV

People with virus live longer, but the stigma of the disease is still there



Life in the U.S. for those dealing with an HIV infection is a much different place today than nearly three decades ago, when Clarisse Jordan was diagnosed with the virus that causes AIDS.

At the tender age of 16, Ms. Jordan of East Liberty contracted the disease, which used to be thought of as a death sentence.

"They told me I wouldn't live to see 24," recalled Ms. Jordan, now 44, who told her story to a gathering celebrating World Aids Day with an interfaith service at the East Liberty Presbyterian Church on Sunday.

Dozens gathered for World AIDS Day program

Dozens gathered at the East Liberty Presbyterian Church for a World AIDS Day interfaith program. (Video by Nate Guidry; 12/01/2013)

Event shines spotlight on HIV/AIDS treatment

County Executive Rich Fitzgerald was among the speakers at a Downtown World AIDS Day event. (Video by Nate Guidry; 12/2/2013)

"And here I am, living with HIV for 29 years," she said. "I want to say I'm surviving."

In the early days of the AIDS epidemic, powerful drugs like AZT helped delay the development of full-blown AIDS, but it's side-effects could be toxic and crippling, Ms. Jordan recalled.

"I've been in the hospital over 300 times," said Ms. Jordan, who contracted pneumonia, congestive heart failure, had 10 ministrokes, and was bed-ridden and on oxygen for five years since her diagnosis. "I was told to make my funeral arrangements."

Doctors told her they had nothing left in their arsenal, but Ms. Jordan said it was her faith in God that got her through.

"I'm grateful in my heart to be able to stand here and tell you I'm still here," said Ms. Jordan, who said she is "happy and healthy" today.

Treatments have also vastly improved, she said.

The 10 pills, including AZT, that Ms. Jordan had to take each morning to combat the virus have been reduced to a cocktail of three drugs a day. So far, the treatment has been effective, she said, though the stigma of HIV is something perhaps more difficult to overcome.

"My family wanted nothing to do with me," when she was first diagnosed, Ms. Jordan remembers.

That stigma and ostracizing of people with HIV, which often blames the patient for being promiscuous or an intravenous drug user, unfairly stamps the victim as having done something "bad," said Chuck Christen, executive director of the Pittsburgh AIDS Task Force.

"HIV affects everyone at every level of socio-economic status," Mr. Christen said. "Yet it's still a matter of social justice because the poor have a higher risk of getting infected."

People of color or those living in poverty, statistics say, represent a disproportionate number of people living with AIDS in the U.S.

Black people represent about 12 percent of the U.S. population, but they account for a 44 percent share of those newly diagnosed with HIV.

Heterosexual women are also getting infected at a higher rate, representing 20 percent of new HIV infections, with 80 percent of those infections attributed to heterosexual contact, according to the task force.

To demonstrate how easy testing is, a group of seven clergy members agreed to have their mouths swabbed in a "witness of solidarity." They stood at the altar, representing a Jewish synagogue, a Catholic church, a Lutheran church, and other denominations.

Though public testing is prohibited by the Allegheny County Health Department, a medical van was on hand outside the church to test everyone who wanted to participate.

It was no accident that World AIDS Day fell on the first Sunday of Advent, said the Rev. Joe Keenan, a Catholic priest.

"Advent signals a time of hope and yearning," he said. "Advent calls the human spirit to a greater depth of self-awareness."

The Rev. Randy Bush, the pastor of the East Liberty host church, agreed to be among those tested and said raising awareness and education about HIV is important. The church is active in LGBT causes, hosting a LGBT prom earlier this year and an upcoming holiday concert by the Renaissance City Choir.

"The church leaders recognize the importance of education and awareness," Rev. Bush said.

It's possible that HIV diagnoses could be drastically decreased if everyone who had the virus was being treated, Mr. Christen said. With treatment, the virus often falls to undetectable -- and less contagious -- levels.

"If we could get everyone who has HIV on medications, we could reduce infections to rare," Mr. Christen said. "It's a chronic disease that can be managed."

Pittsburgh Mayor-elect Bill Peduto was also on hand for the service, lending his support for the cause.

"It's a disease that hits from two sides," he said. "It comes with a stigmatism that's still there in this society. ... We live in a city that could help to eradicate AIDS worldwide."

World AIDS Day is being recognized with two weeks worth of events, including testing at the University of Pittsburgh last week and events coming up this week. There will be an AIDS memorial service tonight at Heinz Chapel, a conference at Allegheny General Hospital on Wednesday and a World AIDS Day Ball on Saturday at the Andy Warhol Museum.

For more information about the event schedule, visit www.pittsburghred.org.


Janice Crompton: jcrompton@post-gazette.com or 412-263-1159.

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