25 YEARS OF CARING
Pittsburgh AIDS Task Force employee offers retrospective on the HIV/AIDS battle
During the deadliest years of the AIDS epidemic, Alan Jones worked in the trenches, dealing with medical casualties on a daily basis.
The early 1990s represented an unwinnable war and race against time, with patient after patient wasting away from diseases associated with the human immunodeficiency virus of HIV.
Many patients lacked money, enough food, and sufficient housing, transportation and medical care. Others were keeping their infection a secret from family members and friends, fearing cessation of communications if the truth be told.
One patient’s family, for example, would leave only a daily bag of food at the infected person’s front door.
With July 1 representing his 25th career anniversary with the Pittsburgh AIDS Task Force, Mr. Jones, 60, of the North Side, agreed to describe the battles he’s helped to wage against AIDS as a caseworker with his current focus being prevention, counseling and testing. His longevity on the job is news enough, considering caseworkers often last only a few years before falling victim to the emotional trauma and burnout.
Prior to his role with the task force, he worked a full decade at the former Dixmont and Mayview state hospitals as a caseworker for deaf patients with psychiatric problems.
“To keep on giving at his level and to keep on being as nurturing and caring as Alan has been is incredible,” said Mary Hawk, a former PATF caseworker now a professor at the University of Pittsburgh Graduate School of Public Health. “You have to remember that when he went through that, he was traumatized and carried every death with him.
“He’s truly an exceptional person,” said Ms. Hawk, a doctor of public health. “The work really matters to him. And the individuals he served always mattered to him.”
Mr. Jones, a certified HIV prevention counselor with the task force, speaks openly about why his job is so challenging.
“I’m pleased to see an age when people are living with HIV and AIDS. It’s a much different picture than 25 years ago,” he said. “The scary thing is that it is a normal need and desire of people — especially among the young but true of everyone 16 to 96 — that we want love, and many people will do anything for love, sex and intimacy.”
A death sentence
The AIDS epidemic in the United States got underway in 1981 but reached its zenith in the early and mid-1990s, with no cure and only the drug AZT available to extend lives. The virus destroys the immune system, leaving patients vulnerable to multiple deadly diseases, typically resulting in extreme weight loss and steady deterioration.
The worst United States toll from AIDS occurred in 1995 with nearly 49,000 deaths — more than kidney disease that year. The total was even more pronounced given its concentration in the gay community with high death levels among teens and young adults. The 35-year-long AIDS epidemic in the United States to date has claimed 660,000 lives — more than twice the current population of Pittsburgh.
Initially, Mr. Jones was a task force volunteer in 1990 but became one of three caseworkers on July 1, 1991, in a grassroots agency that used a card table as a desk. As a gay man, he said, “I needed to do something about it.” Soon he had 102 clients with HIV/AIDS, with the first death occurring within two weeks of his employment.
During one seven-week stretch, 13 of his clients would die, with 160 of his clients dying from AIDS during his career.
“I felt I was in the middle of a horrible situation,” Mr. Jones said. “Someone who was told they had AIDS had 18 months — two years, tops. It was a death sentence, and people knew it was a death sentence no matter how long it dragged out.”
Clients remembered
“Hardest for me was doing home visits and calling on clients,” Mr. Jones said, noting that “when people are dying they are usually honest with themselves, and they connect with you.”
One 29-year-old, he said, expressed remorse that he wouldn’t survive to see his brothers get married or see any of their children. Another young AIDs patient spent his days staring into space after his television set broke until Mr. Jones got help from a nun who sought a donation from the church congregation. An elderly couple stepped forward to donate a television set and one year of free cable TV service, he said.
Mr. Jones arranged to get help for a mother with AIDS trying to raise her school-age daughter, before she was forced to surrender custody to her ex-husband just before her death. A heterosexual client in his 20s dying from AIDS acknowledged to Mr. Jones that he’d slept with many women prior to diagnosis and never used a condom.
More than half of his clients, he said, experienced wasting syndrome due to difficulties in digesting food, loss of appetite and chronic diarrhea — some of them shrinking to 70 to 80 pounds and looking like prisoners of war before death.
“I think emotionally I was fighting depression especially with so many people dying long before their time. It’s hard emotionally going through that — people younger than 40 talking about their death and the loss of life. It was all pretty horrible,” he said.
His clients also left behind parents, grandparents, siblings and friends. The sense of helplessness and “the stigma of having a disease like this made it even worse for people,” Mr. Jones said.
Improving the final days
The task force used government and foundation grants and fundraising efforts to provide HIV/AIDS patients a food pantry and free medications, with caseworkers helping them with housing, transportation and applications for Social Security insurance benefits, even if many died before receiving the first check. Caseworkers also served as friends and surrogate family members to AIDS victims.
“My goal was to help them with what time they had left, to make sure they had the best possible quality of life,” Mr. Jones said. “The hardest thing about it was that the work day was never done.”
During the five worst years of the AIDS epidemic, Mr. Jones said, he saw a therapist regularly to deal with the death and dying.
But in 1996, a cocktail of drugs became available to reduce the body’s viral load nearly to zero and keep the infection in check. By the early 2000s, with long-term survival now possible, the focus shifted to prevention. “Others died because [the cocktail] came too late for them,” Mr. Jones said. “But I have three clients from the early days still living.”
Nowadays, anybody living in Pennsylvania shouldn’t go without care or medications. “Help is available, and what is available now seems to be effective,” he said.
In this era of HIV/AIDS, Mr. Jones continues fighting the battle. But throughout the struggle, Ms. Hawk said, “he not only was a great colleague but was a great role model who was honored and valued by everyone he touched.”