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Failure to Address Aging in New NHAS Implementation Plan - National HIV/AIDS Strategy
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Download the PDF here
Although the Plan in Objective 2.5 (see below) says "to provide whole-person care to older adults with HIV and long-term survivors" - there is no adequate plan in this document to accomplish that. It appears that the only new way the Plan is addressing the need to improve care for OPLWH is - Funding SPNS programs and that is not adequate. We need more than that. We need a reconfigured RWCA to address the unmet needs of OPLWH. The Workgroup that prepared this document did not appear to include HIV doctors, researchers nor aging PLWH nor myself. Everytime, which were several, I offered myself to participate I was completely ignored and dismissed. So now you get a document, a political document that does NOT meet the clinical care needs at all for older PLWH and certainly not the elderly (65+), who have greater unmet needs than those PLWH 50-64.
#1 - This new strategy is JUST WRONG in their comments about assessing care for aging PLWH. They say they will use MMP & use their "indicators". NO YOU can't judge care in the clinic by asking the patient if their "self-rated health" is ok - this is what the document says - "self-rated health captures respondent's perceived overall health in a non-threatening way or stigmatizing way". PLWH have subclinical (below the surface) - without knowing - osteoporosis, heart disease, cognitive impairment, elements of pre-frailty - the PATIENT or PLWH does NOT know this so you cant evaluate the care the PLWH is receiving by asking he PWH. This is obvious.
#2 - What about assessing the current capacity of HIV care ? This Action item immediately below says "assess the capacity of the aging network to serve older adults with HIV/AIDS" - that is NOT evaluating care ? What the hell is the "aging network". Now I assume they do not mean clinical care or they would have say that, so what is the "aging networks". I can only presume they are referring the aging agencies that provide services to the aging HIV-uninfected. Well, that's fine and good but it has nothing whatever to do with the actual clinical care the PLWH is receiving but their HIV doctor and specialists.
#3 - The plan does say to "fund SPNS projects to screen & manage comorbidities, geriatric care etc for PLWH >50" as their way to improve care. That's not an adequate plan. Clinics will not very likely take the time to submit SPNS grant requests. Most HIV clinics today are underfunded, under water, understaffed, overwhelmed and most unwilling or don't know enough to think of submitting a SPNS grant to expand care for aging. That's NOT Good Enough. That's not a longterm solution, that's at best a band-aid. Currently 50% of PLWH in the SA are over 50 yrs old & its expected that by 2030 75% will be over 50. In NY & SF right now 40% are over 60, so by 2030 at least 30% nationally will be over 60. WE NEED A PERMANENT, LONG-TERM solution: reconfigure the RW Care Act & clinic support to meet the needs of the aging & elderly HIV patient community. We need an HIV Care System that meets the need first of the elderly PLWH population, that is - those over 65, second - a care system that meets the care needs of those over 50. We need to reconfigure the RW Care System to meet the needs of what is now the majority population of PLWH in the USA - the aging & elderly population. This document does not address these issues as I can see - this document does not solve the care problem the elderly with HIV over 65 face RIGHT NOW ! They can't get their care needs met right now. This document pushes the problem down the road - we will be left in 10 years with a worse situation with no solution when 40% of PLWH in the USA will be over 60, 20% over 70 & in need of geriatric care & support - death rates & serious comorbidity rates will increase !!!
The documents authors DID NOT CONSULT with HIV doctors, aging HIV researchers, nor with adequate cross-sections of older PLWH over 65. They hand-picked whom in the community, whom they knew, and who they previously worked with to consult with in preparing this document. In fact the document refers to their Implemtation Workgroup they convened to write this document, see below at the end f this report who sits on their Workgroup - no HIV doctors, no clinician & aging researchers, not ME, no elderly community, no elderly PLWH. They refused to interact with me desite my numerous attempts to reach out to them, they never once responded to me - I was comoletely ignored & dismissed.
Their "community engagement" like I said was hand-picked and its clearly questionable whether they had the capacity understand well enough what their healthcare needs are. In fact, I work with PLWH from all over the USA all the time and they clearly do not understand the details and real risks associated with their aging & HIV problem, due of course to the fact the these federal authorities for years have neglected this problem, have NOT educated PLWH about the care issues and in fact have misled the PLWH community by giving them all the idea that viral suppression was the end all & be all.
You cant ask the PLWH "is your heath good" and use that to evaluate if their health is good, laughable. As I said above many geriatric conditions & comorbidites are silent (subclinical) & a patient may not & often do NOT know they have osteoporosis for heart disease, or cognitive impairment or pre-frailty ! That's what a doctor is for, dont ask the patient ! Second, the Workgroup referred to who they consulted with & does not appear to include people expert in HIV care nor delivering care nor knowing the capability or missing care or unit needs of the elderly in HIV clinics !
HERE IS WHAT THEY SAY ABOUT WHOM PARTICIPATED IN PREPARING THIS DOCUMENT:
link to new plan just released to the public Aug 26, 2022: https://hivgov-prod-v3.s3.amazonaws.com/s3fs-public/NHAS_Federal_Implementation_Plan.pdf
Aging & elderly PLWH need action now. Their care needs are all too often NOT being met in HIV & RW clinics. This is clearly well recognized by many experts who are aware of this problem. Insurance reimbursement both public & private has in recent years increasingly come to limit & restrict care for older PLWH who need more attention yet they are receiving less attention. The insurance reimbursement restrictions are such the clinics are limiting medical visits to 15 to 20 minutes. There is not enough time for our HV doctors to dedicate themselves to the older & elderly PLWH who have multiple comorbidities, suffering declines in health who need more time & attention. Appointments with & Referrals to specialists are time delayed, there is little adequate communication between the PLWH, the specialist & the HIV PCP. These public RW funded clinics & the doctors are overwhelmed, undertrained, and not prepared for the elderly & older population & their may needs. We have a RW Care Act funded for $1 billion that is supposed to meet the needs of all PLWH, we are the only group with a dedicated funding stream for healthcare clinics, and over 50% of LWH i the USA are older, over 50, and soon 75% will be over 50 - right now 200,000 are over 60 & soon 400,000 will be over 60. Its time to redesign the RW & HIV care delivery system to meet their needs. This document does not seem to understand the urgency of the aging elderly PLWH population. Many are suffering mental & physical disabilities, and are unable to perform normal daily activities - and many suffer extreme cognitive impairment or mental disorders - we need IMMEDATE help for them, not a promise to "assess" care.
Here is what HRSA said in recent publication:
There must be over 100 Action items in this plan. How will elderly & aging PLWH get their priority needs met in a TIMELY way. There are 200,000 PLWH over 60 in the USA now & 400,000 over 60 expected by 2030 in just 7 years. Many are increasingly experiencing declines in mental & physical health - where is the TIMELY CARE IMPROVEMENT we need in HIV & RW Clinics? This paper promises......"assess current capacity of the aging network" ???
Sounds like a disconnect - we need care for aging & elderly PLWH improved to meet their needs NOW - what is "aging network" ?? HRSA & Many of us already know aging & elderly PLWH are NOT getting their care needs met. HRSA has already said so !!! So why do we need to further "assess" we need to IMPROVE NOW care, we know what that means & HRSA knows to: geriatric evaluations including BMD testing at 50 yrs old, frailty & cognitive evaluations. Regarding research, we NEED implementation studies that provide real time access to care & services to aging & elderly like physical rehabilitation, exercise, healthy eating, support programs for isolation & loneliness. We dont need to "assess" - we need action now ! FUNDING RWHAP SPNS programs as mentioned just below is a good recommendation, how long do we have to wait fr this???
When are these meetings scheduled??? Community, PLWH are not invited to White House meetings ????
ONAP will convene the Federal Implementation Workgroup (see Appendix A) on a regular basis to foster collaboration across the Administration. ONAP will also continue to highlight important issues by convening meetings at the White House, virtually, and in communities across the United States, and by working with federal and nonfederal partners.
There has been nothing essentially out of PACHA on Aging & HIV, no oral discussion, ignoring this subject
PRESIDENTIAL ADVISORY COUNCIL ON HIV/AIDS
The Presidential Advisory Council on HIV/AIDS will provide, on an ongoing basis, recommendations for effective implementation of the NHAS, as well as monitor progress of its implementation. During at least one of its meetings, the Council will review the progress of federal agencies and nonfederal stakeholders in implementing the NHAS.
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