Leon D., 52 years old, was so heavily sedated by his AIDS medications that his attempts at cooking in his apartment kitchen were, more often than not, fiascos.
Smoke fires would erupt in his apartment to the distraught of his neighbors at the senior complex in which he lived. And in addition to AIDS, Leon is battling depression and osteomyelitis, or infection of the bone, which he said “attacks everything.”
“I can’t function well when I’m in a lot of pain,” Leon said. “I have to be constantly thinking about getting the proper medications so I can stay out of pain.”
Three weeks ago, he went to Leeway Inc., the only stand-alone nursing home in the state of Connecticut that cares for HIV/AIDS patients and one of few in the country.
With the advent of antiretroviral drugs, the rhetoric has shifted from surviving AIDS to living with AIDS. But living longer has meant that many must now grapple with the host of other problems spawned by AIDS: the emotional anxiety, the geriatric effects of a long-term illness and the stigma. Mere survival requires juggling as many as 13 medications per day.
“Sometimes AIDS is the least of their problems,” said Sylvia Alexander, director of development at Leeway.
Tina D. spent 20 years of her life as a heroin addict, eventually contracting HIV from the needles she used. The disease was diagnosed in 1990.
Even when antiretroviral drugs became available in 1996, Tina refused to take her medications.
“I took them all and threw them in the trash,” Tina said. She said she remembered thinking, “I want to die and just get it over with.”
But now, she says, no more.
“My whole outlook has changed,” Tina said. “I want to live again.”
Tina is now drug-free and has lived in her own room at Leeway for four months now.
“This place is incredible. They offer everything you could imagine,” Tina said. “I get nervous about leaving because I don’t feel secure going out.”
Tina added that she did not fear a relapse into drug abuse but rather did not feel “self-assured” enough to face life outside of Leeway. Tina is 45.
The ages of the residents have ranged from 16 to 70 and the average age is 41.
When full, the round-the-clock facility can house 40 residents in single-occupancy rooms. On hand are 36 nurses and certified nursing assistants, three physicians and one psychiatrist.
Leeway accepts referrals from hospitals, outpatient clinics, home-care agencies and private individuals. The average stay at Leeway is 90 days though some remain for several years.
For most residents, the daily cost of care at Leeway is covered by their healthcare plans. About 95 percent of Leeway residents are eligible for Medicaid benefits, but Leeway also accepts payments through Medicare, private insurers and from patients themselves.
From its beginning, Leeway has been closely tied to Yale. When Catherine Kennedy moved with her husband Paul Kennedy, the Yale history professor, to New Haven in 1983, she began working as an insurance analyst. In this capacity, she became aware of a dearth in nursing facilities for people with AIDS.
Kennedy discussed in meetings around her kitchen table at home the need for an AIDS patient facility, and from those discussions came the plan for Leeway Inc.
Then she began to raise money and received a $60,000 grant from the Merck Family Fund but, when she requested help from the State Legislature, she faced resistance from indifferent politicians and members of the public who were wary of confronting AIDS as a serious threat to public health.
Eventually, Kennedy won $3 million worth of state funding to renovate an old fire alarm factory on 40 Albert St. chosen for the location of Leeway.
Kennedy died three years ago of pancreatic cancer at the age of 51.
Currently, about 24 Yale students volunteer at Leeway. And about 10 more worked there this summer during FOCUS, a six-day community service program for rising sophomores sponsored by Dwight Hall.
Leeway has moved away from its beginning as a hospice-like facility, but one fact remains: the epidemic that has swept more than 21 million lives has no cure.
On Wednesday morning a resident passed away at Leeway. A week ago, he had been talking about moving out of Leeway and finding his own apartment.
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