“Graying of HIV” Symposium in Baltimore, MD

According to a June 2010 “Fact Sheet” by the Maryland Department of Health and Mental Hygiene, 8% of all state residents living with HIV at the end of 2008 were aged 60 or older. Of the 2,586 new diagnoses in 2008, 6.7% were 60+, as compared to 2.8% back in 1985.

In an effort to educate area health and social service providers about what this aging of the epidemic means for their clients and the surrounding community, The Johns Hopkins Local Performance Site of the Pennsylvania/MidAtlantic AIDS Education and Training Center convened a day-long meeting at Baltimore’s Sheppard Pratt Conference Center on March 22nd. Nurses and social workers in attendance received continuing education credit for their participation.

Presenters represented a variety of perspectives including older adults living with HIV/AIDS, health care and social service providers, researchers, advocates, and family caregivers. The topics they explored ranged from clinical insights into medical case management to protection against discriminatory practices in long-term care settings, and included broader discussions of concerns like sexuality and aging and mental health and substance use among older adults.

Medical Management for Older Adults Living with HIV: Provider Perspectives

Clinical challenges facing medical providers supporting older HIV-positive patients were explored and illustrated using case studies by Johns Hopkins practitioner/researchers Kelly Gebo and Todd Brown in separate presentaitons.

Dr. Gebo started off the day with an overview of current knowledge about how the virus impacts older patients, outlining both current epidemiological trends and some of the reasons behind those shifting numbers. Topics explored included why older adults are becoming infected and how/why clinical outcomes can be so different in older patients vs. younger patients, including “immunosenescence” (the natural decline in a body’s immune system that comes with advancing age, regardless of a person’s HIV status) and related incidence of co-morbidities; numbers of non-HIV meds and possible related toxicities; and psychosocial concerns. She concluded her presentation by calling for research into the high rates of comorbidities in older patients, exploring to what extent some of these co-morbidities are due to HIV vs. age vs. HAART therapy protocols); she also cited the urgent need to develope targeted treatment protocols specifically tailored to the unique experiences of older patients.

Dr. Brown’s presentation later in the morning delved deeper into the issue of co-morbidities in HIV-positive older adults. Opening with the oft-stated belief that “HIV-infected persons are aging faster,” Brown noted that no one really knows why we age, but underscored that both aging and HIV contribute to inflammation which in turn is associated with a wide range of diseases that are more common among older adults living with the HIV, including diabetes mellitus, cardiovascular disease, osteoporosis, cancer, and kidney problems. He then went on to outline three case studies, each illustrating a different common co-morbidity — diabetes, osteoporosis, and lipid disorders – that included detailed disease management and medication suggestions.

Mental Health/Substance Use, Sexual Health, and Whole-Person Care

All presenting providers acknowledged the role that mental health and substance use challenges can play in both a patient’s experience of their own body and overall patient health and wellness; similarly, all presenters recognized the need to work with the whole person when supporting their patients. Three individuals made some aspect of mental health, wellness, and whole person care the primary focus of their presenation.

A more general overview of mental health and substance use concerns among older adults was provided by Karen Hull, Mental Health Coordinator of the Howard County Office on Aging, who alerted attendees to a variety of potential pitfalls facing older adults and the health conditions that can put patients at an increased risk for mental illness, including heart disease, stroke, cancer, and conditions that can limit a person’s ability to function or be mobile, including arthritis, chronic pain, and dementia. Psychosocial concers (such as poverty, chaotic or unsafe living environments, and loss of social support), and other biological factors (family history, side effects from medications, hormonal changes) can also put them at increased risk. She noted that older adults have the highest rates of suicide — double that of the general population — and stressed that it is never a mistake to check in with someone, assess their emotional state, and connect them with services they might hesitate to seek out on their own.  To learn more, check out the website for The Geriatric Mental Health Foundation and The National Alliance for Mental Illness.

Joan Garrity of Garrity Health Consulting and Training came from a very different perspective, inviting meeting participants to think carefully about the assumptions we make about the sexuality of older adults in general and HIV-positive older adults in particular. Citing our collective tendency to fall back on very narrow definitions of “sexual activity” and focus on infection and pathology rather than the basic human need for intimacy and sexual pleasure, she stressed that sex is not only for “the young and able-bodied” and it does not only mean intercourse — for anyone. She cited the World Health Organization’s definition of sexual health, and urged providers to consider how addressing sexual pleasure might enhance their ability to communicate effectively with patients about risk reduction and help them continue to feel good about their sexuality throughout their lives.

Lois Beatty, Director of Nursing at Broadway House for Continuing Care in Newark, New Jersey, touched on these and many other aspects of whole-person care when she described the care model at Broadway House, New Jersey’s only specialized residential health care facility for people living with HIV/AIDS. She recommended insuring that patients/residents have access to a diverse team of providers, including an infection disease specialist who is highly knowledgable about HAART (Highly Active Anti-Retroviral Therapy); a psychiatric nurse practitioner, psychiatrist, or mental health counselor; a dietician with expertise in HIV/AIDS and wasting syndrome; a substance abuse counselor who can provide a range of services, including support groups and one-on-one counseling; and staff with expertise in pain management, including non-pharmalogical interventions like massage therapy and acupuncture (particularly critical for patients who are “in recovery”). Broadway House is the community partner of The Graying of AIDS, and we are strong supporters of their work; look for a profile of their work in the “Pioneers in Caregiving” section of our website in the coming months.

Community and Patient Perspectives

Community and patient perspectives were also explored during the day’s sessions. Attendees were welcomed back from lunch with the same video segment from ABC’s “Brothers and Sisters” that aired at last October’s White House/ONAP meeting on Aging and HIV/AIDS. After some commentary from the director and the actor playing “Saul”,  an older gay family member on the show, a montage of clips followed Saul as he confronts his fears about HIV, gets tested, and talks with his family about what he is going through. Many audience members were unaware of this storyline, and the segment received an enthusiastic response.

Next, ACRIA’s Stephen Karpiak (also a member of Graying’s advisory panel and NYU’s faculty) presented on his research on older adult risk behaviors and prevention, followed by data on the psycho-social variables that will significantly affect health outcomes when managing multi-morbidities in the aging HIV population. He placed a special emphasis on the effects of unmanaged depression on medication adherence and described how the shift from a “silo approach” to managing HIV using a more holistic approach will be a challenge for providers and clients. He then turned the podium over to Dr. Tonya Taylor from SUNY Downstate’s HIV Center for Women and Children, who shared some of her recent qualitative research with older Dominican adults living in upper Manhattan (publications pending.)

Karpiak and Taylor were followed by a compelling panel on family caregiving that highlighted two striking personal stories. Marilyn Burnett, Executive Director of Older Women Embracing Life (OWEL), was joined by her mother, Rachel Ford, a no-nonsense, charming and radiant 86 year old woman who worked as a pharmacy assistant well into her 70s. They discussed taking turns taking care of each other over the years, beginning with Burnett’s diagnosis with HIV years ago, and the way their roles have shifted as they have had to accommodate their ever-evolving health challenges. Also on the panel was Sara Bowling, who has supported her father, Dr. Robert Franke, as they have battled AIDS-discrimination in Little Rock Assisted Living facilities. [Though scheduled to participate in the panel, Dr. Franke was ultimately unable to attend the meeting. To learn more about Dr. Franke’s story, see our earlier blog post, “Standing up to Stigma.”]

Confronting AIDS-Discrimination in Long-term Care

Dr. Franke’s legal counsel, Lambda Legal Defense and Education Fund’s Scott Schoettes, presented on legal issues confronting older adults living with HIV in long-term care settings. After providing some background on the widespread nature of the problem and touching on a number of federal laws that protect people living with HIV from discrimination in these settings – including the Fair Housing Act, the Americans with Disabilities Act,  and the Rehabilitation Act – he also noted than most states have parallel laws that offer similar protections to their residents. Definitions of terms like “disability” and counter-arguments against some of the more frequently used defenses of discriminatory practices inspired a number of questions about both client rights and facility responsibilities; Lambda Legal has created a helpful primer that addresses many of these concerns, available as a free download on the organization’s website.

Dorcas Baker, RN, BSN, ACRN, MA (and host and facilitator of the meeting) wrapped up the day with a brief exploration of the need to expand HIV testing and increasing access to care, highlighting some of the important work currently taking place in the community, and thanking everyone for the commitment and participation.

In addition to the diverse presentations that took place throughout the day, a range of tables were set up to share additional information and resources with attendees, including copies of the pilot issue of The Graying of AIDS magazine. You can order your own copy(ies) of the magazine at cost — or download the digital version for free — from MagCloud.