On a cool, gray spring morning, the kitchen at Ecumenical Ministries of Oregon’s Patton House was warm and bright. A volunteer ladled steaming macaroni bolognese into dozens of cardboard containers. On the stove, a pot of creamy chicken tarragon simmered. Kitchen manager Russ Miller flipped chili-filled omelets onto paper plates, and sprinkled over cheddar cheese.
In a back room, Megan Lewis packs frozen meals — ginger chicken stir fry, meatloaf, ham and bean soup — and bottles of Ensure, filling bags for people living with HIV or AIDS who aren’t well enough to prepare meals of their own.
Lewis coordinates the Daily Bread Express, a home-meal program that has served homebound low-income people with HIV and AIDS since 1992.
Multnomah County Aging, Disability and Veteran Services has set aside $154,000 to help Ecumenical Ministries of Oregon expand the Daily Bread’s reach. That money joins additional funding for other community groups, including Let’s Kick ASS [AIDS Survivor Syndrome] Portland, Q Center and Sage Metro Portland, to better serve an emerging population: people who never thought they’d survive the AIDS epidemic. They did survive, yet many found themselves destitute, isolated and at a loss for how, exactly, to age.
“We literally had friends dying every week. We’d go dancing with someone and then the next day, they’d be dead,” said Steven Headington, president of Let’s Kick ASS. For those, like Headington, who’ve lived with HIV for decades, the loss of friends, the years of harsh medications and the scars of social stigma mean they may never recover. “Even if they came out with a cure today, there is no cure for someone who is a long-term survivor. It’s a whole new generation. It’s something agencies haven’t caught up with. Except Multnomah County.”
The Board of Commissioners recognized those who survived the worst years of the AIDS epidemic by proclaiming the week of June 5-9 as HIV/AIDS Long-Term Survivors Awareness Week.
“So many people who were alive back then didn’t expect to live longer than five to 10 years. They didn’t plan to become old,” said Mary Tegger, a Physician Assistant at Multnomah County’s HIV Health Services Center. “They didn’t plan financially. Many didn’t have a sense of purpose or goals, or they didn’t go back to school. Poverty is a big part of it, and the emotional difficulty of never thinking you would age.”
Long-term survivors are people diagnosed with HIV in the 1980s and 1990s, when the virus was considered a death sentence. And there are also some survivors who remain HIV-negative. They were the partners, friends, family and medical personnel who cared for those dying of AIDS.
Last year, Aging, Disability and Veterans Services identified long-term survivors as a target group for dedicated, culturally appropriate investments and invited nonprofits to apply for funding. While federal funds can help provide home-delivered meals for people 60 and older, people aging with HIV are more likely to need those home services when they’re younger.
Adding County general funds means the division can also provide seven healthy meals a week to long-term survivors who are 50 and older, said Lee Girard, director of the Aging, Disability & Veterans Services. The division has also expanded mental health services and its language around providing caregiver support.
“We really are intentional to use a broad definition to serve whatever ‘family’ means,” Girard said. For everyone on the social services team, it’s personal.
“So much of the work we do comes from a place of mission,” said Erin Grahek, who oversees the County social service program. “So many of us knew people who died.”
For Grahek, it was a close friend who worked at a nursing home where she managed social services. When he got sick, she helped moved him to his mother’s house for his final months. It was during an ice storm in the winter of 1990, and he died the following spring. Yet over the course of the following 28 years, much changed. “Today people are not dying of HIV and AIDS. People are living with HIV and AIDS. So what does that look like?” Grahek asked. “How do we empower people to live their best lives?”
That was the question Jim Clay raised with Aging, Disability and Veteran Services when he asked staff to attend a listening session with long-term survivors. Clay, 71 and a former Multnomah County employee, coordinates Cascade AIDS Project’s Aging Well project, investigating ways to improve the wellbeing of long-term survivors and other aging adults affected by HIV. Clay, who does not have HIV, is one of an emerging population of seniors who thought the AIDS crisis meant they would never get to grow old.
“We all figured we were going to die,” said Clay, who lost his closest friends and his husband to AIDS. “Among my friends, we all assumed we had it. We didn’t know what we had, but we assumed we had ‘it.’”
On June 5, 1981, the Centers for Disease Control published a report of five homosexual men in Los Angeles with a form of pneumonia common in people with severely suppressed immune systems. A month later the New York Times reported a rare cancer called Kaposi Sarcoma was identified in 41 homosexual men. By the end of the year, that number jumped to 270. And nearly half had died. The next fall the federal Centers for Disease Control and Prevention had named the virus, characterized by the infections that attacked a compromised immune system.
Michael Stewart, now in his 60s, remembers those early reports, as rumors and fear took hold. “It was all very mysterious. We didn’t know what was happening. Then people started dying,” he said. Stewart was later diagnosed with HIV and has lived with the virus for more than 30 years. But everyone close to him died. He believed he would, too.
Mary Tegger, the physician assistant at the County’s HIV clinic, was hired on when the clinic opened in 1990. At the time, many of the staff were gay or had close friends who were gay, lending them a sense of charging into battle together. In the early years, staff lost about 10 clients every month.
“We were losing so many patients that there was an intensity to the work that created special bonds among staff and with patients,” Tegger said.
Staff gathered once a month to share memories of those who’d died — a practice that continues today, although much less frequently. Many of those memories have stayed with Tegger. One man, for example, lived alone, isolated, ostracized by his family. “He didn't have other support, so I was thinking about him on weekends,” she said. “He was a wonderful sweet man in his 50s. We were really close.”
The client was too ill to visit the clinic and his appetite had left him. But he had an intense craving for mixed nuts. So Tegger and other staff dropped by regularly to replenish his supply.
In the first years, Tegger’s clients were typically gay men in their 20s and 30s. Today about 40 percent of clinic patients are old enough to join the AARP. With life-extending improvements to HIV medications, the focus for Tegger and her teammates has expanded to helping HIV-positive patients manage diabetes, osteoporosis and heart disease.
For Nurse Practitioner Maria Kosmetatos, the shift means talking to patients about how to quit smoking, control their weight and lower their cholesterol. On a single day last week, Kosmetatos saw four of her longtime patients, many of whom had been on her caseload since she joined the HIV clinic team in 1995. Today they are ages 65, 69, 72 and 77. One patient came to Kosmetatos in 1995 with a T-cell count of five (a healthy T-cell count is over 600). Today, in her 60s, that patient is still alive, living her dream of raising horses and considering how to care for her own aging mother.
Kosmetatos began working as an AIDS nurse in 1986, when patients died within months of diagnosis. Antiviral drugs appeared a decade later, but they came with strict regimens and severe side effects. Kosmetatos remembers picking up alarm clocks at Radio Shack to hand out to patients so they could wake up in the middle of the night to take a cocktail of pills that caused explosive vomiting and diarrhea.
“And it was one drug after another that wasn’t potent enough. Failure after failure,” she said. “Really, from 1996 through the mid 2000s, we struggled with all these medications. They caused short- and long-term side effects.”
Many long-term survivors struggle with the consequences of those early medications. They may experience fat redistribution syndrome or numbness and burning pain in their fingers and feet from taking a drug called AZT, explained Dr. Robert Lusk, medical director for Our House. They may have vision impairment from eye infections. Early medications caused irreversible liver damage, loss of bone density and cognitive impairments.
Our House opened in 1988 as a hospice provider for people dying of AIDS. By the late 1990s, the nonprofit began shifting to care for people aging with HIV.
“It caught everyone off guard,” Lusk said. “The care model went from one of taking care of folks in their last days and weeks of life to helping people become independent and live their lives autonomously. And that’s a radical departure.”
HIV became just one condition among many that medical staff at Our House helped residents manage. After decades of serving high-calorie meals and daily dessert to counter patients’ dramatic weight loss, Our House bought smaller dinner plates, began serving vegetarian meals and limited the nights they prepared sweets.
But perhaps more serious than the physical side effects of aging with HIV, or even just the traditional effects of aging, are the psychological side effects.
“Living with a life-threatening illness is going to change how people view life. It’s inevitable,” Lusk said. “Add on top of that a disease that took friends, lovers, family. They’re still dealing with grief and loss. Add to that the social stigma. And it’s certainly going to create a difficult set of circumstances that is hard to cope with.”
Many long-term survivors build an emotional wall. They question what to do with the rest of their lives. “A lot of long-term survivors never thought they would have to address that question,” Lusk said.
Today, even with new medications that allow people to have long, normal lives, people newly diagnosed with HIV, often still ask, “When am I going to die?”
“The odds are, you won’t,” Lusk tells them. “Keep contributing to your 401K. You’re not going to die before you’re 50. Things are different now.”
When Terrance Gravening was diagnosed with HIV in 2000 at age 37, he never thought he’d live to see retirement. And he didn’t plan for it. But today, with a healthy T-cell count and undetectable levels of HIV, he’s asking himself if he could rejoin the workforce after nearly two decades on disability. If not that, then what?“I honestly thought I wouldn’t be here. Almost 17 years later, it’s been an incredible ride,” he said. “I don’t know what the next 10 years look like. Being able to find a community, and finding a purpose, is important.”
Gravening has found purpose through volunteer work, serving on the Client Advisory Board for the County’s HIV clinic, volunteering in the lobby to help other patients through rough times and organizing craft events for clients. And he has found community through Saturday morning breakfasts with Let’s Kick ASS.
“Because pills and HIV are so much of my life, it’s nice knowing this is a place I can go and it doesn’t have to be the center of conversation.”
Resources
Ecumenical Ministries of Oregon: hosts an HIV Day Center and community meal site for people living with HIV and AIDS. They also provide home-delivery meal service for low-income people living with HIV and have a new program for people 50 and older who are living with HIV/AIDS. To apply for this free service, contact Daily Bread Express coordinator Megan Lewis at 971-279-9724.
Let’s Kick Ass Portland: hosts a Saturday morning coffee social for long-term survivors, supporters and others impacted by the worst years of the AIDS epidemic.
Cascade Aids Project received a grant from Gilead Sciences, Inc. to work with long-term survivors and seniors living with HIV and AIDS.
Our House: A residential care facility launched in 1988 to serve people dying of AIDS, increasingly serves senior living with HIV and AIDS.
CAREAssist: Oregon’s state-administered AIDS drug assistance program.
Sage Metro Portland: A social and community organization for LGBT seniors.
