Living, years later, with HIV

Sue Kehler (left), Hilda Hernandez and their dogs at their Philadelphia home. Kehler was among dozens of people with HIV or AIDS who were in "Philadelphia." She may be the last one living.
Sue Kehler (left), Hilda Hernandez and their dogs at their Philadelphia home. Kehler was among dozens of people with HIV or AIDS who were in "Philadelphia." She may be the last one living.

"Philadelphia" and AIDS Law Project mark anniversaries.

Posted: November 20, 2008

It's easy for most of us to forget that, not too long ago, an AIDS diagnosis meant certain death.

Sue Kehler remembers. She was one of dozens of people, mainly extras, in the 1993 film Philadelphia who had the disease or were HIV positive.

She may be the only one left.

"It was an experience that made me feel special," she says, recalling how Tom Hanks saw her feeling woozy, asked if she'd eaten, and demanded a break.

Jonathan Demme wanted his groundbreaking film - the first big production about AIDS - to reflect reality.

Kehler remembers an extra named Mark Sorensen, his face covered with lesions from Kaposi's sarcoma, who told a joke in the medical clinic scene. She giggled - her only speaking part, although she is visible a lot in the courtroom, sitting behind Hanks and Denzel Washington.

Demme rushed a rough, unscored video copy of the film to Sorensen's home in Malvern on Sept. 16, 1993; he died the next day. Most of the others were dead within a year.

Yesterday marked 19 years since Kehler found out that she was infected.

It so happens that this year is the 15th anniversary of Philadelphia and the 20th anniversary of the AIDS Law Project of Pennsylvania, the only independent firm in the nation that focuses entirely on AIDS discrimination and related issues. Kehler will speak at a Law Project celebration tonight at City Hall. Demme will join a panel discussion led by author/screenwriter/saxophonist James McBride.

The Law Project's mission and the film's theme - a gay lawyer with AIDS (Hanks, in an Oscar-winning performance) is fired by his blue-chip firm and hires a homophobic ambulance-chaser (Washington) to sue for discrimination - clearly overlap.

"We're 25, 30 years into the epidemic and people are still losing their jobs because of HIV, people are still being denied services," said Ronda Goldfein, the Law Project's executive director, who put together the $150-per-person fund-raiser.

Bias accounted for less than 10 percent of the firm's 2,100 cases last year. Help in getting people public benefits made up the bulk of the work. Both were always part of the mission, Goldfein said, although the ratio has changed.

HIV was far from Kehler's mind in 1989, she said, as physicians tried for months to figure out why their pregnant patient was developing fevers and swollen glands.

The news that she was HIV positive came in a telephone call. Her fiance then told the doctor they shared about his intravenous drug use years before. She said his parents, not wanting the burden of caring for a dying son, his dying girlfriend and their dying baby, insisted that she abort the pregnancy; it was during the procedure that she learned she had twins.

A support group had unintended consequences as other women would became emaciated and disappear, with new members in their place.

"I thought to myself: 'Where's Betty? Where's Diane? Oh my god,' " she said, "I didn't even realize it."

With the disease still "hush-hush," she saw the movie as a coming-out of sorts - a time to stop hiding her HIV status and to get out of what had become a dangerously abusive relationship.

CoreStates Bank, where she worked, was totally supportive, even giving her vacation time as scenes were shot around the city. It was an exciting period, she said. But people were dying.

"It was selfish, but I would be thinking, 'Oh, no, am I next?' "

Kehler, 44, doesn't look sick. Her eyes sparkle and open wide with expression.

She fatigues easily, however, and she has considerable pain in her back, nerve damage in her legs, and arthritis in her neck - conditions that she attributes mainly to a fall and beatings from her fiance, who died in 1995.

She has never gotten AIDS, which is diagnosed when the body's count of immune-fighting T-cells drops below 200.

Hers has fluctuated over the years between 400 and 700. She said she finally realized she would be around for a while when her count briefly rose to 1,000 - normal - eight years ago.

Although uncommon, cases such as hers are not rare, said Ian Frank, an AIDS doctor at the Hospital of the University of Pennsylvania.

The key, he said, was surviving to 1996, when the so-called AIDS cocktail of antiretroviral drugs became available. Those who did tended to have particular immune systems or specific concentrations of the protein that HIV needs to replicate.

Kehler puts particular faith in God - and Hilda Hernandez. Hernandez, 45, helped her get away from her abusive fiance, and the two women have lived together as friends in the Far Northeast ever since.

Hernandez tears up recalling one recent exchange:

"I said: 'You see that old lady walking? We're going to be there, too."


 

A 1992 interview with Sue Kehler on the set

of "Philadelphia," a film clip, and more about

the AIDS Law Project:


Contact staff writer Don Sapatkin at 215-854-2617 or dsapatkin@phillynews.com.

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