Aging with HIV Goes to the White House

I just received an update from Dr. Steve Karpiak from ACRIA about the White House meeting on aging with HIV held last week. Dr. Karpiak was among the 100+ invited attendees at this meeting to “raise awareness about people who are aging with HIV or contracting HIV as seniors (>50 years of age); to explore unique clinical manifestations of HIV infection among older adults; to discuss existing services for seniors living with HIV and highlight successes as well as gaps; and to discuss targeted strategies for Federal and non-Federal stakeholders to realize the vision of the President’s National HIV/AIDS Strategy” according to the White House Office of AIDS policy. There is a link on this page to a youtube video of the meeting.

Here are some observations Dr. Karpiak made of the event:

Education –  The need for those in the world of HIV/AIDS and those who work in the Aging universe to know about the increasing number of older adults living with HIV. The epidemic is no longer young only! In fact it is now old – mostly!

Research – This is a given. Research dollars are always scarce, but the need to address this issue is now growing at a rapid pace. Many spoke about ACRIA’s seminal 1000 person study ROAH (Research on Older Adults with HIV) illustrating that community based research can significantly affect the dialogue.

Health  Outcomes – There is a need to assess bottom lines – health outcomes. What works – what does not work –  and move forward using evidence based information and not conjecture and anecdotes,  or,  providing services that makes everyone feel good – except the client.

Prevention   – There is a vacuum. No systematic evidence based prevention effort targeting older adults (HIV negative or positive) has ever been developed for the over 50 populations – emphasis on the S. Prevention messages for the 50-60 year old are likely very different than those for the 70+ group! ACRIA has much to share with 3+ years experience n developing such initiatives in NYC (funded by the New York City Council) and across the US (funded by the MAC AIDS Fund).

Isolation – Acknowledgement  by almost every person who spoke in the room that the older adult living with HIV is socially  isolated due to the toxic forces of stigma which contribute to their high rates of depression, substance use and poor mental health management.

Power – The power of  the voice of the  peer PLWHA over 50 is unquestioned. There were community members, ASO staff, people of faith communities,  and government staff who were HIV+ and over 50, some LGBT – their bearing witness is potent.

Partnerships – The HIV world must collaborate with the Aging world. Those in HIV/AIDS cannot ignore the massive knowledge and experience of those who work in Aging. Time and resources will have been wasted unless there is collaboration from both domains. ACRIA is unique in that it has done this for the last 8 years.

Thank you Dr. Karpiak for sharing your thoughts.  I will continue to pass on more information about the event and of any policy changes that emerge as a result.


3 responses

  1. I am a graduate student in the Gerontology Master’s degree program at San Francisco State University (SFSU). Here in San Francisco, I recently (October 28, 2010) attended a presentation of the report: “An Emerging Issue: HIV/AIDS and Aging, a Report of the Joint Workshop on HIV and Aging” presented by the San Francisco HIV Health Services Planning Council. I do not see a copy of the report online, but presumably it can be requested via e-mail pdf from the Planning Council Staff, Enrique or T.J. (see for e-mails and phone numbers) (That is how I got my copy). This is an example of how local research and local reports help raise awareness.

    On another front, I recently presented in a SFSU Gerontology Aging and Public Policy class on Aging and HIV. Here is a brief synopsis of my presentation:

    Issues are:
    Same as the San Francisco AIDS Planning Council policy recommendations on HIV and Aging as presented by Randy Allgaier on October 28, 2010 in San Francisco (the report I refer to above).
    Issues presented at the White House Meeting on HIV and Aging of October 27, 2010 as viewed via the White House website via their link to a YouTube recording of the conference.

    My recommendations:

    Perfect world recommendations (assumes unlimited resources):

    1. Retain recruit and/or replace specialists in HIV and aging due to the fact that they are retiring in huge numbers.

    2. Have “one stop shopping” centers for medical social and psychological needs of those living with HIV and aging with services in one place for HIV care, aging services and disabled services.

    3. A czar to coordinate and foster communication between the three major service sectors for HIV and aging, HIV services, Aging services and Disability services.

    4. Housing services for older people living with HIV.

    5. An option allowing people on disability to be considered as if they were already over age 65 for benefit purposes if they wishe, so they could return to work and not lose benefits such as social security. This addresses why some do not return to work due to uncertainty about losing benefits.

    Compromise recommendation

    (The SFSU course required a recommendation not involving any significant new funding)

    1. An official website on the national and local levels allowing the three major service providing sectors (HIV, Aging and Disability) to communicate and coordinate among themselves and communicate with their client base.

    Pro: Low cost – Only cost of having websites and maintaining them, i.e about $200/month for the site license and about $100/month for a technician.

    Con: Many elderly and disabled cannot access websites.

    2. Programs to educate and train seniors, clients and providers to access and use the Internet to coordinate, communicate and share information at low cost. Comment: This is a necessity given the current trend toward controlling costs and not initiating any new programs having significant costs.

    Thanks for listening

  2. […] has shared the result of his studies.  For a report on Aging with HIV Policy go to my post – Aging with HIV Goes to the White House and read his […]

  3. […] developments in the field: SAGE developed a policy paper on Aging with HIV; There was an historic White House meeting on HIV and aging; Interesting findings were discussed at the Baltimore Conference on HIV and […]

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