Many of the aging people living with HIV suffering the most may not be able to defend themselves.
- An ACT UP working group is starting to compile a list of HIV care facilities with experience treating long-term survivors and people living with HIV over the age of 50 who are experiencing aging-related comorbidities and complications — such as cardiovascular disease, hypertension, frailty, sarcopenia, and neurocognitive decline
- The level of detail that we currently have on most of these sites is inadequate. We would like to invite HIV-treating facilities to help us better characterize what services are being offered
- In general, we believe the needs of older people living with HIV are not being adequately served by the existing care model, and hope to leverage this work, and link to other efforts from NATAP and the Department of Health to create a more multidisciplinary model of care for older HIV positive people who have more complex medical needs
Last week, we wrote about a crisis for a number of older patients with HIV and complex treatment needs who were suddenly dropped from care when their longtime doctor, Dr. Joseph Olivieri, was arrested. Some had already tried to find placement in alternative practices but could not find comparably experienced care. Others are believed to be at risk of being lost to care.
We contacted Dr. Demetre Daskalakis, the dynamic Deputy Commissioner at New York City’s Department of Health and Mental Hygiene about the issue.
Within a couple of minutes, the Deputy Commissioner wrote back to say that he had heard about the doctor’s arrest though he had not been aware that his patients had been dropped by the medical practice (Ageonics Medical).
“We may have a couple of tricks up our sleeves. Let me work on it,” Dr. Daskalakis wrote. In a subsequent message, he said that he was checking with his team working on care coordination to see if they could be of assistance.
The next morning, Graham Harriman, who serves as the Director of Care and Treatment at the Bureau of HIV/AIDS Prevention and Control at NYC’s DoH, reached out. He provided an excel spreadsheet list (see attached) with contact information for 17 medical practices (including large hospital systems with HIV clinics as well as sites such as Callen Lorde and Housing Works) in New York City that have Ryan White Medical Case Management (RWMC) Programs that would be able to support transition of Dr. Olivieri’s patients to their clinic. He had also emailed these practices to let them know that they may be contact.
In theory, Ryan White Medical case managers ought to be able to assess each patient’s needs and make certain that they are placed with the right sort of care providers — though, as with anything else, it is a bit ‘luck of the draw’ — which may depend upon whether one’s case manager understands the unique issues confronting older people living with HIV (OPLWH).
Although the list could prove useful, it contained no information about whether the practice has much experience caring for long-term survivors or people living with HIV and aging-related comorbidities such as frailty, sarcopenia, and neurocognitive impairment. It was also noted that it does not include the Weill Cornell’s Center for Special Studies — one of the only programs with a unit focused on studying aging in the HIV-positive population.
Mr. Harriman agreed that Weill Cornell was an important addition to the list — it was not included because it is not part of the RWWC program, but it does have social workers who provide the same service — and he checked with them to confirm that they are open to receiving new patients.
Mr. Harriman also then asked the RWPA Care Coordination program sites on his list to better characterize their experience and approach to managing older people living with HIV. As this post was being prepared only four sites had responded. With the exception of the STAR Program at SUNY Downstate Medical Center in Brooklyn, and most only offered very limited information.
- Wyckoff Heights Medical Center
Positive Health Management
1610 DeKalb Avenue
Brooklyn, NY 11237
Care Coordination Program Director: Pierre Simon, MPA, Program Manager
Known to have experience serving OPLWH but no additional information provided by the agency.
- Argus Community
760 East 160th St.
Bronx, NY 10456
Medical Partner: Montefiore Hospital – The AIDS Center
3444 Kossuh Ave.
Bronx, NY 10467
Care Coordination Program Director: Maria A. Rodriguez
Information provided by the agency: “The program mostly assists PLWHA that are over 50 years of age. We have had clients with multiple diagnoses including cancer, dementia, liver failure, diabetes, and other illnesses.”
- Institute for Family Health
Family Health Center of Harlem
1824 Madison Ave
New York, NY 10035
Care Coordination Program Director: Rebecca Green, LMSW, Regional Director of COMPASS Programs
O: 212-423-4500 ext. 4565
Information provided by the agency:
“A large number of our patients are 60 and above, and in fact at our Harlem clinic, the majority of patients we see are older adults. Some of the ways we seek to provide good care to older adults is:
- We send HIV program staff to trainings specific to working with older adults
- Our medical providers are all family medicine or internists, and trained in care to older adults
- We have close relationship with Mt Sinai and able to secure referrals to specialists.”
- Weill Cornell Center for Special Studies
525 East 68th Street
New York, NY 10021
53 West 23rd Street
New York, NY 10011
53 W. 23rd ST, 6th Fl
New York, New York 10010
According to Graham, “They will be able to screen for insurance and eligibility by phone, but they take a number of Medicaid and Medicare payment sources.”
They are also linked to New York Presbyterian’s facilities, and have a relationship with a research unit led by HIV and Aging studies, led by an expert, Dr Eugenia Siegler (https://www.infectiousdiseaseadvisor.com/hivaids-advisor/older-adults-infected-with-hiv/article/787027/).
- STAR Program, MSC 1240
SUNY Downstate Medical Center
450 Clarkson Avenue
Brooklyn, NY 11203-2012
Care Coordination Program Director: Lori Hurley, LMSW, MPH, Assistant Director, Care Coordination
Information provided by the agency:
“Currently 50% of our HIV population at STAR is 50 years or older (600 pts). All our MDs are boarded in IM/ID—and familiar with complex cases. Our psychiatrist specializes in consult liaison psychiatry and neuropsychiatric conditions. We have a clinical pharmacist in clinic session 5 days a week to address complicated medication profiles.
“Neuropsychiatric testing is available at SUNY Downstate Medical Center, where STAR is based, and our referral specialist and Care Coordination PNs assist with these referrals. SUNY also has geriatric-specific resources such as an Alzheimer’s unit, and a wheelchair clinic
“We have a wide array of supportive services in addition to Care coordination, including case management, MH counseling, registered dietitian, phlebotomy, HCV, Prep-PEP–all co-located; and within Downstate—radiology, and medical/surgical subspecialties.
“In the past year program staff have received training offered by Dr. Steven Karpiak from ACRIA on HIV and Aging, and Dr. Marshall Glesby from Cornell on HIV and comorbidities on aging population.
“STAR Program’s Tonya N. Taylor, PhD, Assistant Professor of Medicine, has made multiple journal club presentations to clinical staff on HIV and aging, which is her research specialty.”
This short list can be seen as a basis to build upon providing information to these abandoned patients (or any OPLWH) about where to seek more appropriate care, with the level of detail provided by the Star Program providing a model that would like to be received from other practices caring for OPLWH in New York City. But even so it may not be enough. As one of Dr. Olivieri’s dropped patients told us:
“Each practice will claim that each of their HIV providers are extremely medically competent to handle all HIV cases that come to them. Period. I would disagree. There is a fund of deep knowledge that come from putting in the years/decades of working in HIV care. Most especially evidenced in keeping long term survivors thriving. NOT just surviving.”
Consequently, the ACT UP working group focused on this case may design a questionnaire to send to clinics to elicit more information. Feedback may also be solicited from the community can leave actual feedback in order to provide a way for OPLWH to start demanding accountability from their care providers.
In the long run, an ultimate goal would be to leverage these activities to demand better care for everyone with HIV and aging issues, whether in New York City or elsewhere.
To last point, we contacted Jules Levin of NATAP, who highlighted some of the outcomes he believes are needed:
“All HIV clinics and clinicians at a bare minimum should have the training and knowledge on how to address comorbidities and aging. Many primary HIV providers do not understand heart disease in HIV and how to monitor or when to refer, and whom to refer to.
Small clinics and small doctor practices must receive training and linkages to proper specialists. We should have uniform standards of care.
“But more than that we do not have a set of adequate integrated fully inclusive services that meets the needs of aging HIV+ in NYC or anywhere. Older aging HIV+ who need more time should have extended visits with their primary HIV provider, and they should have complete care coordination where the input of specialists + the primary care doctor coordinate and communicate with the patient, to prevent them from falling through the cracks. It’s difficult in many cases because some patients are unable to understand their clinical situation for many reasons regarding many issues including certain comorbidities.”
Levin believes that sometime over the age of 55, most HIV-positive people will experience the disabling effects of HIV on aging to some degree — though it will vary as to when and some will have more severe problems, depending on factors such as how low their CD4s were before treatment, how long before they started treatment (and the amount of viral replication that went on in their bodies, the drugs they were treated with and how complete their viral suppression currently is. Medical history, diet, substance use and other lifestyle factors also compound the problems.
Many of the aging people living with HIV suffering the most may not be able to defend themselves. As Levin told us, they are “a select group that are impaired physically, functionally, neurologically & cognitively — so they are silent. They cannot speak for themselves. They are invisible hidden behind the wall of disability; and without platforms from which to speak, we don’t hear from them. [If we] wait until 75% with HIV in NYC are over 65-70, it will be a nightmare; it will be obvious and a glaring display of missed opportunities, but it will be too late for many as they are already in that hinterland of disability. Then we will have to discuss where will we house those unable to take care of themselves at home anymore, most of them are alone with no family and few friends and no caregivers — having lost many of their friends who are in the same boat.”
Addressing those issues is a great challenge, but it could begin with some simple steps of finding suitable alternatives for the patients from Dr Olivieri’s practice, characterizing them well, so that people know what to expect, and establishing a gold standard to which advocates can try to get other sites to adhere.
NATAP has worked with Harriman and Dr. Daskalakis on this issue before. In fact, they held a forum on issues related to OPLWH and long-term survivors in New York this part January. A future post will review some of the findings from that meeting, and investigate what actions have resulted from that meeting.
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