The AIDS Generation Navigates Aging with the Aid of a “Compass”
by Hank Trout
Photographed Exclusively for A&U by Michael Kerner
From the very beginning of the AIDS crisis, the HIV Clinic of the UCSF HIV/AIDS Division at Ward 86 at Zuckerberg San Francisco General Hospital has been at the forefront of AIDS healthcare. Since it was established in 1983 as one of the first HIV clinics in the country, the stories of bravery and compassion, as well as medical innovation, that have flowed from Ward 86 are legion, from the handwritten log of Ward 86 patients and the nurses who sadly, lovingly recorded their deaths, to the tap-dancing entertainment brought to patients by Rita Rocket during the worst years of the plague. Its care model has been praised and duplicated for decades as a model of HIV care around the world.
Ward 86 has grown significantly since it was opened on January 1, 1983, by Paul Volberding, MD, Donald Abrams, MD, and Constance Wofsy, MD, and now provides care for more than 2,600 PLWHIV in San Francisco. Today it offers a comprehensive array of medical services for PLWHIV, including primary medical care, HIV specialty care, drop-in medical services, substance use evaluation and treatment, clinical pharmacy services, and specialized services for African-Americans, women, adolescents, and Latinos living with HIV. In January 2010, Ward 86 became the first clinic in the country to counsel universal antiretroviral treatment (ART), regardless of CD4 count. Their clinic policy states, “All patients, regardless of CD4 count, will be evaluated for initiation of antiretroviral therapy (ART)” and that “…all patients should be offered ART unless there is a reason to defer therapy.” As a result, over ninety percent of Ward 86 patients are prescribed ART and over eighty-five percent of those on ART have an undetectable HIV viral load.
Thanks to the success of such treatment regimens, and many other factors, including various antiretroviral treatments, people with HIV are living longer, healthier lives than anyone expected. In San Francisco, some sixty percent of all people living with HIV are age fifty or older and twenty-five percent are over the age of sixty-five. Despite the successes since the advent of HAART, aging with HIV or being diagnosed with HIV later in life can still bring new challenges. Entering the Golden Years can at times feel even more overwhelming for PLHIV than for other seniors, with PLHIV facing an increase in the risk of heart disease, osteoporosis, memory problems and certain cancers, which occur in HIV-positive adults at younger ages than in HIV-negative adults. Older PLWHIV often face deep depression and isolation resulting from the lingering pain of losing so many friends in the early days of the HIV/AIDS epidemic and continuing to lose friends now to both AIDS and causes associated with old age.
Recognizing the unique trials and struggles of the aging population of PLHIV, Monica Gandhi, MD, Professor of Medicine, Division of HIV, ID, Global Medicine, UCSF; Meredith Greene, MD, Assistant Professor of Medicine, Division of Geriatrics, UCSF; Deputy Clinic Director, Mary Lawrence Hicks, NP; Clinic Nurse Managers, Eva Mureithi, RN, and Jon Oskarsson, RN; Mary Shiels, RN; Janet Grochowski, PharmD; William Olson; and other support staff discerned the need for a treatment program that specifically addresses the issues of aging with HIV.
Thus, the Golden Compass program was born in 2017.
“The idea of the Golden Compass, as a whole, as well as the points on the compass emerged from surveys and focus groups we conducted with patients and staff/providers at Ward 86,” Dr. Gandhi tells A&U. “The name Golden Compass developed from the idea that across all the focus groups, an acceptable term to refer to aging was ‘Golden Years’ and there was a theme around needing help ‘navigating’ growing older with HIV. We developed the idea of a compass to help with navigation, and the four points resulted from the focus groups as well as key issues facing older adults living with HIV in the medical literature.”
Thus, in January 2017, under the direction of Drs. Gandhi and Greene, Ward 86 launched the Golden Compass program. The program’s name refers to four factors related to the directional markers on a compass, hoping to serve both the medical and psychosocial needs of PLWHIV over the age of fifty. According to its website, those include:
NORTH—Heart and Mind: The program employs a cardiologist with expertise in HIV. Dr. Greene helps evaluate memory concerns and makes any referrals as needed. Brain Health Classes are offered weekly by a community gerontologist, Hope Levy, who adapted her original program of classes to include practical strategies for dealing with some of the common challenges people dealing with HIV-associated neurocognitive disorders might face.
EAST—Bones and Strength: Exercise classes for PLWH age fifty or older are offered; focus on preventing falls, supporting bone health. Now known as the “Wellness Club,” the exercise class is a popular group with regular attendance.
WEST—Dental, Hearing and Vision: Ward 86 links people to the appropriate screenings and services. Golden Compass also works with patients to help obtain discounted eyeglasses and hearing aids for those for whom such expense is a barrier as well.
SOUTH—Network and Navigation: The program has piloted a support group and more recently has been focusing on the classes as a way of bringing people together to build connections and provide support for each other. Other activities, such as healthy cooking demonstrations and mindfulness, are examples of how Golden Compass brings people together and builds support through activities.
According to Dr. Greene, “Anyone over the age of fifty at Ward 86 can participate in all aspects of the program, and older adults living with HIV across the city are welcome to join in the classes. For the Friday afternoon clinic, we have also been able to see patients from outside the clinic, although we may have to get prior authorization from the insurance company, depending on the type of insurance.”
I ask Dr. Greene, “What has been, for you, the most inspiring of your success stories with Golden Compass?”
“Often the seemingly small issues can have a big impact on someone’s quality of life,” she says. “It is always rewarding when someone comes back after the first clinic visit and reports an improvement in symptoms, such as nausea, from a small change such as adjusting the timing or dose of a medication. It is also rewarding to be able to help advocate and support patients. For example, we have helped someone move into supportive housing, and helped advocate for a landlord to install grab bars in a shower to help prevent someone from falling again. Some patients have taken advantage of multiple components of the program, and it’s rewarding to hear them share something they learned in class when we see them in clinic.”
One such patient, Hulda, volunteered to speak with me as I prepared this article. Hulda is a seventy-four-year-old straight woman whose infection story is as atypical as they get. After moving to the San Francisco Bay Area from Chicago at the age of 37, Hulda fell on hard economic times. Even though she wore heavy-duty gloves for protection while digging through a trash can for glass and plastic products to sell to a recycling plant, Hulda was stuck with a needle left in the trash. She thought nothing of the prick, though, until she started getting sick: Her finger turned completely black and she developed diarrhea and other symptoms. Two weeks after the needle prick, she was diagnosed as HIV-positive—diagnosed with ARC, AIDS-related complex, as it was called at the time.
“That was quite a shock to me! I didn’t know anything about AIDS. It was supposed to be a gay white man’s disease. Well, I ain’t gay, I ain’t white, and I ain’t no man!” Despite the gravity of our half-hour chat, Hulda’s indominable spirit and humor shine through—a testimonial, perhaps, to the efficacy of the program? She had been a patient at Ward 86 for some time when she joined the Golden Compass program. Her favorite part of the program, she tells me, is the North compass point, Heart and Mind. “I go to the heart and mind classes every week,” she shares. “It has really helped me deal with some mental health issues as well as my HIV issues. It’s this class that most helps me stay healthy.”
For the first twenty or more years of the epidemic, no one ever imagined that we would one day be addressing issues of aging with HIV—the diagnosis was, in effect, a death sentence. As medications have improved, however, PLHIV have been thrust into an entirely new paradigm, one they neither expected nor prepared for. Programs like Golden Compass—and compassionate, dedicated physicians like Drs. Gandhi and Greene and their team—are essential to ensuring that our Golden Years are truly golden.
Funding for the Golden Compass program comes from the City and County of San Francisco Department of Public Health and the Ryan White Care Act, with additional support from the San Francisco General Hospital Foundation and private donations. For more information, log on to https://hiv.ucsf.edu/care/aging.html.
For more information about photographer Michael Kerner, log on to: www.kernercreative.com.
Hank Trout is an Editor at Large at A&U. Follow him on Twitter @HankTroutWriter.