We are delighted that the topic of aging and HIV/AIDS received so much attention at the conference (including a number of presentations and an excellent satellite conference coordinated by ACRIA, our collaborating partners on A Graying Pandemic; we are even more excited that a variety of media outlets made a point of ensuring that the message got out to the larger public.

MEDIA ROUND-UP:
Here are a number of links to some of that coverage, including mainstream American outlets like ABC News, The Washington Post (we’re featured in pics 7 & 8 ), the Associated Press and The Los Angeles Times, and key international publications like The Mail and Guardian. In the months since the conference, and coinciding with National HIV/AIDS and Aging Awareness Day, additional coverage has come out of important media outlets that target the HIV/AIDS community, including the San Francisco AIDS Foundation’s BETA blog, and powerhouse information clearinghouse TheBody.com has launched a brand new aging and HIV/AIDS focused resource page, held a roundtable discussion on the topic, and highlighted the long term research on “HIV and Premature Aging” that Amy Justice, M.D., Ph.D., a professor of medicine and public health at the Yale School of Medicine and lead investigator of the Veterans Aging Cohort Study (VACS) presented at AIDS2012. Finally, organizations and advocates who have been working to get the word out about aging and HIV/AIDS for some time have continued to fight the good fight, including our colleagues at AIDS.gov, and our friends and collaborators in Baltimore, Anna Fowlkes and Dorcas Baker, who are featured on a local radio program discussing the issue.

A GRAYING PANDEMIC INSTALLATION AT AIDS2012:
If you weren’t able to travel to DC for the conference, it can be hard to adequately communicate the level of excitement, energy, enthusiasm, emotion, and (at times) exhaustion that characterized the week’s activities. We were so fantastically busy, we were rarely able to stray far from our installation area, but we could hear the roar of political action, animated information sharing, HIV-positive activists from Native and Aboriginal nationsdrumming and chanting, a broad range of choral groups from around the world singing, fashions shows and dance presentations and joyful reunions filling the space around us. Above all of that rose the voices of the incredible people who sat down to share their stories with us: here are some behind-the-scenes snapshots of our experience creating and expanding A Graying Pandemic with exceptionally generous and lovely older positive adults from 12 countries, 13 American states, plus Puerto Rico and the District of Columbia.

Whenever we had a moment of downtime between portrait shoots or interviews we processed the interviews and photographs we had just created and got them up on the wall as quickly as possible, but we became increasingly busy as the week wore on, so much of the work never made it onto the walls of our installation in the Global Village. Our on-line exhibition is still a work-in-progress, but a large number of the images created in DC – and an initial cross-section of interview excerpts – can be accessed there (please check back often to watch it grow).

A GRAYING PANDEMIC EXHIBITION AT GOVERNORS ISLAND, NYC:
Finally, we’ve been delighted to bring a selection of this work to New York City’s beautiful Governors Island as part of the 5th Annual Governors Island Art Fair this summer. The fair, which is free and open to the public, runs every Saturday and Sunday in September (closing this Sunday, September 30th). Visitors are able to roam 120 rooms and attic spaces across five historic buildings once used for military housing that currently feature work by more than 100 international artists and a handful of galleries and organizations. The work shown represents a variety of media: painting, photography, sculpture, video, drawings, performance, installation, and everything in between. If you happen to be in the metropolitan New York area this weekend, we hope you’ll come by and visit our installation before it closes. A complete list of exhibitors and more information on the free ferry service to the island can be found on the event website.

For more images and excerpts from this project, go to: http://agrayingpandemic.tumblr.com

images courtesy of Viviana Peretti and Allison Shelley

Over the roughly five days that the Global Village at the XIX International AIDS Conference was open, The Graying of AIDS team (Katja Heinemann, Naomi Schegloff, and Viviana Peretti) worked with adults age 50+ from around the world who openly self-identify as living with HIV or AIDS to create photographic portraits and explore what it means to be aging with the virus around the globe. In all, we photographed and interviewed older adults from 12 countries, 13 American states, Puerto Rico and the District of Columbia, posting new images and interview excerpts in our on-site and on-line galleries whenever things quieted down for a moment.

But things rarely stayed quiet for long: in addition to the many amazing older adults we worked with in our highly visible exhibit space on the edge of the Global Village Café, we spoke with activists, researchers, care providers, and curious on-lookers from around the globe who brought their own questions, stories, and perspectives on the pandemic to our booth. The Global Village was the only part of AIDS2012 that was free and open to the public, enabling anyone who happened to be in Washington DC from July 22 – 27 to visit and learn from people from around the world who are living with and fighting HIV/AIDS with creativity, resilience, power, and compassion. The breadth and depth of knowledge, experience, and creativity was truly something to behold; our only regret about our time in the Global Village is that we were so busy talking with and photographing this extraordinary group of older adults living with HIV that we had little opportunity to truly explore the other booths and activities taking place throughout the conference.

We are grateful for the abundance of material – both portraits and interviews – we were able to gather while working non-stop in our Global Village installation; much of what we collected is already up on our tumblr, but there is still much to share. Although we are no longer creating new materials, we will continue to add interview quotes and images in the coming weeks as we get caught up with transcribing, editing, and handling other aspects of post-production, and encourage you to check back often. Eventually each photograph will be paired with interview excerpts, and additional quotes, questions, and feedback will be posted on the “main wall.”

For now, we want to send a big THANK YOU out to all who participated: for your time and patience while we were swamped, for your humor and good spirits, and for your generosity while sharing your experiences, insights, and questions about aging with the virus during the interviews. We are grateful for the trust you placed in us and for your support of this project. We also want to thank the many of you who shared your questions and feedback on-line and on our on-site question/feedback boards; your questions had a major influence on the course of our conversations with project participants, and their answers will be included in the quotes and interview excerpts populating our on-line exhibition. It has been an amazing week for us, and we hope all who participated – both project participants and exhibit visitors – enjoyed their time at AIDS2012 as much as we did. Finally, as the face of the pandemic keeps changing, we hope that this on-line exhibition will provide a useful resource for all those interested in the intersection of aging and HIV.

This exhibition is presented in collaboration with AIDS Community Research Initiative of America (ACRIA). With special thanks to the women and staff of Iris House and the staff and clients of ACRIA who worked with us before we headed to DC to test possible approaches to portraiture and interviewing, and shared their own experiences of aging with the virus.

http://agrayingpandemic.tumblr.com

Over the roughly five days that the Global Village at the XIX International AIDS Conference was open, The Graying of AIDS team (Katja Heinemann, Naomi Schegloff, and Viviana Peretti) worked with adults age 50+ from around the world who openly self-identify as living with HIV or AIDS to create photographic portraits and explore what it means to be aging with the virus around the globe. In all, we photographed and interviewed older adults from 12 countries, 13 American states, Puerto Rico and the District of Columbia, posting new images and interview excerpts in our on-site and on-line galleries whenever things quieted down for a moment.

But things rarely stayed quiet for long: in addition to the many amazing older adults we worked with in our highly visible exhibit space on the edge of the Global Village Café, we spoke with activists, researchers, care providers, and curious on-lookers from around the globe who brought their own questions, stories, and perspectives on the pandemic to our booth. The Global Village was the only part of AIDS2012 that was free and open to the public, enabling anyone who happened to be in Washington DC from July 22 – 27 to visit and learn from people from around the world who are living with and fighting HIV/AIDS with creativity, resilience, power, and compassion. The breadth and depth of knowledge, experience, and creativity was truly something to behold; our only regret about our time in the Global Village is that we were so busy talking with and photographing this extraordinary group of older adults living with HIV that we had little opportunity to truly explore the other booths and activities taking place throughout the conference.

We are grateful for the abundance of material – both portraits and interviews – we were able to gather while working non-stop in our Global Village installation; much of what we collected is already up on our tumblr, but there is still much to share. Although we are no longer creating new materials, we will continue to add interview quotes and images in the coming weeks as we get caught up with transcribing, editing, and handling other aspects of post-production, and encourage you to check back often. Eventually each photograph will be paired with interview excerpts, and additional quotes, questions, and feedback will be posted on the “main wall.”

For now, we want to send a big THANK YOU out to all who participated: for your time and patience while we were swamped, for your humor and good spirits, and for your generosity while sharing your experiences, insights, and questions about aging with the virus during the interviews. We are grateful for the trust you placed in us and for your support of this project. We also want to thank the many of you who shared your questions and feedback on-line and on our on-site question/feedback boards; your questions had a major influence on the course of our conversations with project participants, and their answers will be included in the quotes and interview excerpts populating our on-line exhibition. It has been an amazing week for us, and we hope all who participated – both project participants and exhibit visitors – enjoyed their time at AIDS2012 as much as we did. Finally, as the face of the pandemic keeps changing, we hope that this on-line exhibition will provide a useful resource for all those interested in the intersection of aging and HIV.

This exhibition is presented in collaboration with AIDS Community Research Initiative of America (ACRIA). With special thanks to the women and staff of Iris House and the staff and clients of ACRIA who worked with us before we headed to DC to test possible approaches to portraiture and interviewing, and shared their own experiences of aging with the virus.

http://agrayingpandemic.tumblr.com

http://agrayingpandemic.tumblr.com

FREE AND OPEN TO THE PUBLIC!

Opening Hours:  Sunday July 22: 5pm-9:30pm
Mon-Thurs July 23-26: 8:30am-8:30pm
Friday July 27: 8:30am-12pm

While The Graying of AIDS has always focused on older adults living with HIV/AIDS in the United States, from July 22 – 27th we will be setting up shop at AIDS2012 to use the documentary arts to explore what it means to be aging with the virus around the world. Now that increased access to effective anti-HIV medications is enabling many people to live with the virus into their 50s, 60s, and beyond, what lies ahead? There is no single answer, and we want to hear your take. Where are you from? What’s your story? Help shape our group portrait of the graying of this epidemic.

Visit us in the cafe (Booth #959) of the Global Village – the only part of the XIX International AIDS Conference that is free and open to the public. Anyone aged 50 or older who self-identifies as aging with HIV is invited to join us in our temporary portrait studio to pose for a photographic portrait which will be added to an ever-evolving on-site installation of photographs and uploaded to a new “on-line exhibition” (those photographed will also receive a copy of their portrait to keep). Older adults living with HIV will also be invited to share some of their stories and thoughts on aging with the virus during a targeted interview, and quotes from these interviews will punctuate both the on-site and on-line exhibitions. Collectively, we hope that these excerpts will help underscore the similarities and differences between people’s experiences of aging with the virus in different cultures and political and economic climates around the world. Finally, anyone – regardless of age or HIV-status – is encouraged to join the conversation by sharing their reactions to these images and quotes, or submitting their own questions for participants.

And if you won’t be heading to DC, we hope you’ll visit our on-line exhibition throughout the week; watch how the conversation develops through portraits, quotes, and reactions on-site, on Facebook and on Twitter; and let us know what you think and what you’d like to know more about. You can start right now! Tell us:

If you could ask one question of older adults aging with HIV around the world, what would it be?  
This exhibition will be presented in collaboration with AIDS Community Research Initiative of America (ACRIA). ACRIA will also be presenting on aging and HIV/AIDS throughout the week – often in tandem with key domestic and international partners working in advocacy, research, services, and policy. Don’t miss the satellite conference “HIV and Aging: The Challenge of the Epidemic’s Fourth Decade” (presented by ACRIA, the Terrence Higgins Trust, HelpAge International, GNP+, SAGE, and GMHC) on Wednesday, July 25, 6:30-8:30 pm. To learn more about this and other events taking place throughout the week, check out AIDS 2012 Reunion.

As with many large professional conferences, the catalog was filled with many more engaging session blurbs than anyone could possibly explore. Even when focusing on presentations that were particularly relevant to the central themes in our project, we were, at times, forced to choose between multiple appealing options.  So here, rather than giving a comprehensive run-down of everything we attended or wish we had attended, we offer some links that can connect you with some of the presenters, organizations, and resources we think you might find most relevant, useful, and engaging, with apologies to the many amazing presenters we missed:

• Central theme #1: Older Adults and HIV/AIDS: If you haven’t had a chance to watch Aging POZitively by Chicago’s Center on Halsted, consider setting aside 35 minutes to check out this profile of three HIV-positive LGBT older adults (including Graying of AIDS advisory panel member Helena Bushong). ASA’s website has created a resource page on aging and HIV/AIDS that might also be of interest. A special highlight was when an informative and engaging group of presenters including Danielle Nelson from the Adminstration on Aging (AoA), Hilary Meyer from the National Resource Center on LGBT Aging, Karol Markosky from the Council of Senior Centers and Services of NYC, and Ron Hill from Western Reserve Area Agency on Aging presented “Promoting HIV/AIDS Prevention and Treatment Within the Aging Network.” Among the many useful things to come out of this presentation was an introduction to AoA’s new Older Adults and HV/AIDS Toolkit.

• Central theme #2: Older Adults and Sexual Health: Researcher (and Graying advisory panel member) Mark Brennan-Ing of ACRIA joined Britta Larson from Center on Halsted and Jennifer Makelarski from the University of Chicago to present “Sexual Activity and Health Among Older LGBT Adults.”  You can download a related webinar Brennan-Ing presented on behalf of the New York State Office for the Aging, the New York State Department of Health AIDS Institute, and ACRIA that is available to all online, “Older Adults, Sexual Health, and HIV/AIDS.” While at the conference we also heard from representatives from Widener University’s Sexuality and Aging Consortium, whose resources and on-line bibliography might be of interest.

• Central theme #3: LGBT Aging:  Loree Cook-Daniels from FORGE Transgender Aging Network, Karen Fredricksen-Goldsen from the University of Washington, Lisa Krinsky from LGBT Aging Project, and Serena Worthington from SAGE came together to present “The Health Report: Resilience and Disparities Among LGBT Older Adults and Caregivers.” In addition to the information you can find through all of these organizations’ websites, you might want to check out Caring and Aging with Pride by Fredricksen-Goldsen. Cook-Daniels and Fredriksen-Goldsen later teamed up with Harper Jean Tobin from the National Center for Transgender Equality to speak on “Transgender Aging: Results of the Latest Studies,” and Tobin blogged about her experience following trans issues at the conference. During the meeting we also connected with Tarynn M. Witten of Virginia Commonwealth University, who has worked extensively in this area. At a time when more and more organizations are recognizing the need to be more inclusive and sensitive to the needs of transgender clients, it was refreshing to have so many committed researchers and providers on hand to offer much needed insight and guidance.

• Central theme #4: How the Arts Can Affect How We Think About Aging: Martin Iguchi from Georgetown University School of Nursing & Health Studies stepped in on behalf of an ailling Joan Jeffri of The National Center for Creative Aging to introduce attendees to Still Kicking, a 2011 study of professional performing artists aged 62+ living in New York and Los Angeles.  This study draws from both qualitative and quantitative data to explore what these extraordinarily resilient older adults might be able to teach us about how to support healthy aging in the future. In our ARTAHA blog, we explore individual pieces or bodies of creative work that have had an impact on how people think about aging, AIDS, or both; this “body of work” is a reflection on 270 lives lived creatively, and they will almost certainly affect the way you think about aging ( “It’s the jumping that’s hard. I can still kick.” – 68 year-old former Rockette dancer, NYC).

In the 2+ years since The Graying of AIDS received support from the Open Society Foundations to create our multiplatform outreach and education campaign, we have met a remarkable array of people from across disciplines who are concerned about issues related to aging and/or HIV/AIDS. Our acceptance into the transformative Reel Aging: Films for the Generations residency – convened from March 22 – 27, 2012 in Warrenton, VA, and Washington, DC, by Working Films with support from the the John D. and Catherine T. MacArthur Foundation – connected us with a whole new group of inspired and inspiring colleagues.

For four jam-packed days, Graying joined ten other aging-focused documentary projects, the Working Films team, and advisors and guest presenters Donna Phillips Mason, Anne Basting, Barbara Abrash, and David Weigelt to brainstorm, share ideas, and prepare for Day 5, a convening with activists, NGOs, funders, government agencies, and other policy makers working on the ground to support older adults and those that care for and work with them.

The overall goal? To begin to explore how we might work together to ensure that our media projects serve as useful tools for the critical work being done around aging-related concerns. Working Films has already offered up both an excellent overview of the residency and one organizer’s personal take on the experience; we’re going to take a few minutes here to follow her lead and share some of our own reflections.

Perhaps the most meaningful take-away from our time with Reel Aging was also the most obvious: there’s an extensive network of talented, committed, and downright lovely people doing this work in editing rooms, communities, and diverse organizations and institutions around the country, and given the enormity of the challenges we will collectively face as demographics shift to the older end of the spectrum in the years ahead, thank heavens for good people.

The eleven documentary projects varied in a number of ways: team members were directors, producers, editors, photojournalists, organizers, and educators in different stages of our lives and careers; some projects were just getting started, while others were “in the can” and fully entrenched in their outreach/engagement phase; and our storytelling approaches ranged dramatically in style and scale. But we shared a commitment to teasing out the best ways to tell stories that are compelling, honest, and respectful without oversimplifying the issues, and to making sure that all of our hard work ultimately contributes to some sort of meaningful change for older adults and the people who care about them.

During the first four days of the residency, we spent a lot of time together on the startlingly picturesque grounds of the Airlee Center, talking about our projects and ideas for audience engagement but also about other documentary and community work that has moved us, our lives outside of our current projects, and the amazing food served up in the dining room every day. We exchanged honest and constructive feedback on each others’ work and pitches-in-progress, encouraged each other when we got frustrated, and shared ideas, bike rides, and beverages at the nearby pub. It felt, at various times, like an intensive work retreat, a grueling class, and a sometimes awkward / sometimes hilarious / never boring group date. And our thoughtful and supportive guides through all of it – the amazing team from Working Films and our guest presenters – were tremendously generous with their personal insights, life experience, and time as we muddled through the occasional rough patches in our individual journeys.

We were all exhausted and excited when we rolled into the Pew DC Conference Center for the convening on Day 5, but presenting our pitches to the room full of advocates, activists, researchers, agency and organizational representatives, and funders was less intimidating than one might have anticipated because we knew our peers were rooting for us from around the room. Our audience was remarkably attentive, curious, thoughtful, and engaging, and many were enthusiastic about the opportunity to collaborate with the documentarians to build something powerful together.

No matter where we are in our project timelines, we all have a lot to do to expand on the foundations we built together over those five days, take full advantage of the important new connections we’ve forged, and help integrate our documentaries into some of the critical work being done to support older adults and their care providers in communities around the country. While the breadth and depth of the work ahead of us could be daunting, knowing that we’ll be doing it together with this incredible network of people, organizations, and institutions makes it all seem far more doable, more promising, and more fun, and we’re really looking forward to seeing what happens next.

March was an inspiring, information-and-opportunity-packed month for The Graying of AIDS. First Naomi was invited to participate in a panel at Baltimore’s Graying of HIV: An Aging and Growing Population daylong conference. A few days later, both Katja and Naomi were able to attend the jam-packed five day residency Reel Aging: Films for the Generations in Warrenton, VA and Washington, DC, convened by Working Films. And as soon as Reel Aging was over, the American Society on Aging’s annual Aging in America conference started up In Washington, DC.

The Graying of HIV conference, Baltimore, March 2012

Over the roughly two weeks members of the Graying team spent in the Baltimore / Washington area, far too many people were encountered, ideas shared, and dots connected to offer up a truly comprehensive blog post. Instead, we’ll be bringing you a series of brief summary posts to share some of the major ideas and key players we encountered and offer up some links for those interested in learning more.

Baltimore Graying of HIV: An Aging and Growing Population Conference (3/20/2012, Baltimore, MD)
(The first of three posts on our March adventures)

Presentations on aging and HIV/AIDS often take place in more specialized environments which specifically target people living with HIV, researchers, or providers; sometimes sessions on aging and HIV/AIDS are offered as a subset of a broad range of options at large professional meetings, where they can get lost in the crowd. That’s one of the reasons Graying of HIV: An Aging and Growing Population is such a big deal: it’s a relatively low-key, intimate conference, and audience members include people living with the virus, students, activists, researchers, and care providers (continuing education credits are available) who come with questions ranging from gaps in current medical research to conflicting treatment approaches to personal struggles with medications.

Conference organizer Dorcas Baker brought together a wide variety of speakers for this day-long conference at the Sheppard Pratt Conference Center in Baltimore, MD, sponsored by the Johns Hopkins Local Performance Site of the Pennsylvania/MidAtlantic AIDS Education and Training Center, which opened with greetings from Dr. Patrick Chaulk of the Baltimore City Health Department and Carmi Washington-Flood of the Office of Faith Based and Community Partnerships for the State of Maryland.

Dr. Cynthia Boyd of the Johns Hopkins Center on Aging and Health provided a thoughtful and thorough introduction to the dominant theme of the day, the challenges raised by managing multimorbidity (or multimple long-term health conditions) when working with older patients living with HIV/AIDS. She reported that 48% of Medicare participants aged 65 or older have three or more chronic conditions, consuming 89% of Medicare’s budget, and questioned whether Clinical Practice Guidelines (CPGs) developed for management of specific diseases are actually applicable to – or healthy for – older adults living with multiple morbidity in general and AIDS in particular. Older PWAs are particularly likely to have age-related losses of kidney and/or liver function and can be especially hard hit by drug interactions and toxicities. Dr. Boyd stressed the importance of focusing on what the patient cares about most and adjusting treatment regimes to insure that patient priorities are respected while maintaining the best quality of life possible.

GoA advisory panel member Dr. Stephen Karpiak, Associate Director of Research for ACRIA, later expanded on the issue of managing multimorbidities while echoing Dr. Boyd’s call for a patient-centered approach to care. Dr. Richard Havlik, another GoA advisory panel member, further focused on the interrelationship between depressive symptoms and multimorbidities among older people living with the virus, noting an association between higher levels of depression and more comorbid conditions among older PWAs. He called for increased longitudinal research, screening, and treatment, citing the MacArthur Model Intervention for Depression which screens patients and connects those with confirmed cases of depression with both clinical treatment and weekly case-manager phone calls that provide long-distance support and direct patients back to their clinical providers when new concerns are identified. (Dr. Boyd, Dr. Havlik, and Dr. Karpiak were all involved with The HIV and Aging Consensus Project, which worked together for two years before releasing their recommended treatment strategies late last year.)

Current approaches to addressing aging and HIV issues on the ground and in communities were explored in a three-person panel. Carolyn Massey discussed her role with the Baltimore HIV Planning Council and her work as Executive Director and member of OWEL (Older Women Embracing Life), a support group for older HIV-positive women that has been hosting the annual Legends and Young’uns: Phenomenal Women Living Longer with the Challenge of HIV conference since 2006; she was so focused on highlighting the important work of these organizations that she almost forgot to mention that she also identifies as an older woman, activist, and educator living with HIV/AIDS. Debbie Batson described the impressive diversity of resources and programs provided through Rivington House, a New York City-based residential facility that works to integrate traditional and alternative therapies and address the physical, mental and spiritual needs of people living with HIV/AIDS; so many people in the audience expressed their admiration for and curiosity about the Rivington model that she offered a personal invitation to attendees interested in checking it out for themselves. And Graying’s Co-Director and Director of Community Engagement, Naomi Schegloff, introduced attendees to The Graying of AIDS, shared a teaser for the project, and stressed the central importance of dialog and storytelling in breaking down the stigma surrounding HIV/AIDS.

A big-picture perspective came from Cyd Lacanienta of Intergroup Services, who addressed the impact of national policy when she teased out some of the complexities concerning the Affordable Care Act as it relates to HIV/AIDS. Terry Hogan shared some of the highlights from the materials in the Winter 2011 issue of HIV Specialist, which focused on the experiences of older adults living with HIV and included many images and quotes from Graying.

Dr. George Siberry from NIH’s National Institute of Child Health & Human Development brought a twist to discussions of “aging with HIV,” citing parallels between the challenges and comorbidities experienced by older adults living with HIV/AIDS and the patients he works with, “aging” perinatally infected youth.

Dorcas Baker rounded out the day by bringing the conversation back to how concerned health care providers connect patients with treatment in the first place, expanding HIV testing initiatives and increasing access to quality care.

There was a time when a blood draw (using needles) was necessary to get an AIDS test, but that is no longer the case: in many places you can be tested with a finger prick or a mouth swab. Thanks to the joint efforts of the Centers for Disease Control and Prevention, aids.gov, and the National Prevention Information Network, you can learn about HIV testing centers and other resources near you by entering your zip code below or by sending a text-message with your ZIP code to: KNOW-IT (566948).