Aging with HIV Crisis in New York City
Last week, two members of ACT UP NY came to the general meeting to tell us about a crisis that has befallen, by their estimation, a few dozen older HIV+ clients who were receiving care from an HIV-specialist named Olivieri based in Manhattan who was arrested a few months back. Dr. Olivieri’s practice specialized in treating older people with HIV with the co-morbidities of aging… which, in some cases, involved testosterone for those with hormonal imbalances. His arrest involved a charge that he sold a prescription to an HIV-negative undercover police office (see link).
Putting aside the steroid-related arrest, this has been a catastrophe for a number of his older patients who now have to scramble to find care from a clinician (or better yet-a multidisciplinary team) with experience in treating older HIV-positive patients with comorbidites. Many of the older hero docs have sold their practices and/or retired, others don’t have openings for new patients and the quality of care that one might receive at other sites can be hit or miss. I’ve made some referrals (e.g. to Weill Cornell, some of the Mt. Sinai sites) but I don’t know whether any of them have been effectively linked to care providers who understand their needs. And to make matters worse, someone in that doctor’s office destroyed the patient records (I presume in an overzealous attempt to protect the office if there was anything suspect in the files).
Moreover, there is a concern that many of the elderly and most frail patients might fall through the cracks. There will be an effort by ACT UP and some of the patients to track down the other patients through social media, long term survivor groups and social networks.
But it raises a couple issues. 1) First, we need to have the capacity to mount an emergency community response whenever old practices close. Usually, this is orderly, and the old practices can help place their patients elsewhere. In this case, it was sudden and patients have been left to fend for themselves.
2) Why is it so difficult for older people with HIV to find medical care that meets the complexity of their needs? I know it goes against the narrative that HIV is easy to treat — and it is, relatively, in the younger, healthier recently diagnosed patients. But in talking to peers, the care received is very uneven. Referrals to specialists that are frankly needed routinely take months and months — time in which the individual may become permanently disabled or worse, die. We’ve seen it happen to too many of our peers who didn’t receive the appropriate intervention soon enough. Who will be next?
Any ideas — should we be identifying and highlighting centers that can deliver better multidisciplinary care for aging people living with HIV in order to establish a better standard?
ACT UP members came up with the following agenda:
Goal: Establish a set community response to help HIV+ people who suddenly find themselves without an experienced doctor.
Questions to consider:
– What information is available to doctors about off-label or less common uses for medications often taken by HIV+ people?
– Is the District Attorney considering the implications of shutting down medical practices without the city checking on patients/making sure their records are protected?
– When medical records are lost, how to continue care?
– How do we keep doctors from dropping vocal HIV+ patients?
– What can be done about inexperienced/low quality clinic care? Do people know enough to recognize when they receive substandard care?
– Communicate with HASA and other city agencies, LGBT/HIV publications, Dr Demetre Daskalakis, deputy health commissioner, etc., both to help establish community resources/precedent and to pressure DA to shut down clinics with better regard for patients.
– Use AU Alumni group and social media to find people who have been affected by the loss of their doctor. In cases where a clinic was shut down, they can work together to complain/fight for their records.
– Communicate with LTS groups at service orgs and online for ideas/support.
– Start an email list to work through this topic.
– Use social media networks to find other affected people.
Jules Levin, of the National AIDS Treatment Project (NATAP) who has been working tirelessly on this issue for some time, this morning sent me a journal article from last year that advocates for the sort of multidisciplinary care that I think we should be demanding for the older people living with HIV — at the very least for the growing subset that appear to have advanced biological (as opposed to chronological) aging, which can be established in some as early as 50 years of age: http://www.natap.org/2018/HIV/030518_01.htm
Jules adds: “It’s crucial and imperative to provide special and better care coordination to make sure patients see specialists and receive care and follow up, and services for those who need them, including better patient contact and follow up, detailed in depth attention, home care and support: food shopping; household maintenance: addressing social isolation and that many are emotionally and physically impaired. Many older patients are so cognitively impaired they are unable to followup and they don’t even know what their specialists recommended but importantly their primary provider does not have the time to address this either — which is why we need extended visit times and care coordination and special support services.”
We will provide more updates to this case as they develop. In the meantime, other activists have pointed out that this is “a silent new crisis” and that ” if NYC is lacking, places like South Carolina are beyond desperate for attention to aging issues.)”
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