York House Hospice offered sanctuary in worst days of AIDS epidemic

Tina Locurto
York Dispatch

Many patients of York House Hospice came to die, and Joy Ufema remembers them all. 

A 5-year-old named Boo Boo.

A patient who was found living in a cardboard box.

And then, Sheila — a frail, African American woman who came to the hospice with nothing but a grocery bag of belongings seeking a final resting place.

Sheila (left) is embraced by York House Hospice worker Georgia (right) in July 1992. Sheila is photographed and published in this photo collage book published by the Corcoran Gallery of Art and National Hospice Foundation. Tina Locurto photo.

Though she knew her time was short, Ufema and her fellow nurses tried to give her the small luxuries — pizza and flowers — she never had before.

And then one day, Sheila asked Ufema's employee — who was getting married — to come by her room. 

“And out of this old black patent leather purse, she pulled out $0.35,” Ufema said. “And she said, ‘Here Stephie, this is my wedding gift to you.’ We bawled. It was how she repaid in her own way the dignity, comfort and love that we gave her.”

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Sheila was one of 105 AIDS patients who died at York House Hospice between 1990 and 1995, in the early days before medical advances allowed people to live long, relatively normal lives with the disease. 

"When the antivirals were developed, patients were living longer," Ufema recalled. "So it was bittersweet that we had to close."

The Duke Street brownstone was a sanctuary for an ever-increasing population of AIDS patients in York County in the 1990s. 

Joy Ufema reflects on her work for York House Hospice on Nov. 2, 2022. Tina Locurto photo.

Ufema, who only had six months to transform the space into a live-in hospice care center, was entirely motivated after losing her nursing job at North Charles Hospital in Baltimore. 

“I went down in the woods under a big pine tree and I was just sort of digging in the dirt, and out came a plastic letter ‘A’ like kids put on the refrigerator. And that's what it is. It’s AIDS. You have to work with AIDS,” Ufema said. “It was a fire in the belly — you couldn’t stop me.”

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She recruited help from Bradley Art Academy, whose students came up with design plans to engineer bedrooms to meet the needs of patients suffering from AIDS.

Despite societal stigmas surrounding the disease, few in York County turned down Ufema's call to action.

If she needed hospital beds, she got them. If the hospice needed a new roof, it was built.

“My staff was just exceptional,” Ufema recalled. “They were really kind nurses and not afraid of AIDS.”

Joy Ufema flips through a scrapbook of York House Hospice on Nov. 2, 2022. Tina Locurto photo.

By 1994, AIDS became the leading cause of death for Americans ages 25 through 44, according to the American Psychological Association. 

York, too, was hit by the epidemic. 

And though AIDS was stigmatized, Ufema and her nurses never feared.

“The Hispanic community would come on Sundays after church and play guitar and sing,” Ufema said. “It was just this whole sense of commitment and connection.”

By the end, York House Hospice served over 100 patients — gaining notoriety and publicity for its service to provide respect and safety for all who knocked on the doors.

Ufema did an interview with CBS News' "60 Minutes."

Joy Ufema flips through a scrapbook for York House Hospice on Nov. 2, 2022. Tina Locurto photo.

York House Hospice was featured in a photographic exhibit in the Corcoran Gallery in Washington, D.C.

Then, a letter from St. James’s Palace arrived one day in March 1996.

A check for 300 British pounds from the Princess of Wales.

Throughout the HIV/AIDS epidemic, Princess Diana emerged as an ally to those suffering from the disease. She shook hands and hugged those with the virus, and she opened the UK’s first HIV/AIDS unit at Middlesex Hospital in London.

Ufema, who admired Diana for her work to destigmatize AIDS, invited the princess to visit York House Hospice. Though she could not personally visit, Diana’s letter touched Ufema, who keeps the note framed in her study.

a check from The Princess of Wales Charities Trust for 300 GBP was written out to York House Hospice in 1996. Tina Locurto photo.

A life: Born in Altoona in 1942, the now 80-year-old Ufema resides in Fawn Township with her partner Linda.

She completed nurse training at Harrisburg Community College before earning a master's degree at Columbia Pacific University.

Throughout all of her nursing jobs, Ufema always found herself drawn to death and the dying.

“We had not done a good job on dying patients in our society. Patients were put in the last room down the hall and their calls were ignored,” Ufema said. “If I was fully present on a busy night for about 10 meaningful minutes, I think the patient sensed that I was ready to listen.”

Humanity can often be lost in medicine. In a system reliant on seeking a diagnosis and finding a cure, many doctors were reluctant to discuss death, Ufema said. 

“I wasn't afraid if patients thought they weren’t going to make it out of here,” Ufema said. “It was OK to be open and honest and express their fears. And I think almost everyone wants to talk about what it means to leave the planet.”

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Ufema said she constantly felt overwhelmed surrounded by death.

"I had to fight the system. The physicians and nurses were not as kind and loving, and it was sort of on me to try to run interference," she added.

At York House Hospice, meanwhile, caring for patients was the easy part of her job.

But as patient referrals dwindled and medicine intervened to keep patients alive longer, the need for York House Hospice, too, died.

It was Ufema's baby, and she knew it was bittersweet to close its doors.

"This was made for AIDS patients and the time is over," Ufema said. "And we did a good thing when we needed it."