Category: News
AIDS Monument Newsletter – 2021 Q1
January 27, 2021
Remember. Celebrate. Educate.
MESSAGE FROM THE BOARD CHAIR
As we enter 2021 with renewed optimism and with an end in sight for the global pandemic, the Foundation for The AIDS Monument (“FAM”) wishes you a Happy New Year and thanks you for your past support.
This newsletter will be published quarterly starting this year, so that we can regularly bring you news of FAM’s activities and achievements. I’m proud to be able to devote significant time to FAM matters as a newly-retired entertainment lawyer and as the new Chair of the Board of Directors. I have big shoes to fill in succeeding my good friend of over 30 years, Mark Lehman.
As FAM embarks on its new “Digital Monument” venture (more on that below), we hope that you will consider additional donations and will participate in some of the online and, eventually, live events that FAM has in store for 2021.
One of my goals as the new Board Chair is more consistent communication with our supporters so that you know what we’re up to and where your donations are being invested. I’m excited to help shepherd FAM’s transition from a successful capital campaign into collecting and telling stories that speak to our mission and that continue to motivate us to build STORIES: the AIDS Monument:
This Monument:
Remembers those we lost, those who survived, the protests and vigils, the caregivers
Celebrates those who step up when others step away
Educates future generations from lessons learned
Warmest regards,
Irwin M. Rappaport
MONUMENT FUNDING AGREEMENT REACHED WITH CITY OF WEHO
We are pleased to announce that on November 16, 2020, FAM entered into a revised Memorandum of Understanding (“MOU”) with the City of West Hollywood in which FAM agreed to donate to the City the sum of $2.43 million in exchange for the City agreeing to take over the fabrication and installation of STORIES: The AIDS Monument in West Hollywood Park, and to pay the balance of up to $2.57 million in future costs associated with the Monument.
The City will hire a design-build contractor to oversee the fabrication and installation of the Monument, with installation currently anticipated to occur by December 2022.
Many thanks to Oscar Delgado, Steve Campbell, Ric Abramson and Michael Jenkins on behalf of the City, and Mark Lehman, Craig Dougherty, Rogerio Carvalhiero, Irwin Rappaport, and former FAM Executive Director Tony Valenzuela for their time and effort in bringing about the revised MOU.
THE ‘DIGITAL MONUMENT’
Now that FAM’s capital campaign for the physical monument is complete, FAM can focus on fundraising and producing what we call our “Digital Monument”:
- recording interviews with survivors, activists, community leaders and caregivers;
- collecting diverse stories from the public;
- building a timeline of significant events related to HIV/AIDS;
- capturing video footage from FAM’s events;
- producing an audio tour for visitors to the Monument; and
- creating audio recordings of selected postings on The AIDS Memorial on Instagram (@TheAIDSMemorial) so that stories of loss, resilience, activism and community can be heard while walking through the monument
The Digital Monument’s collection of stories will be housed in FAM’s redesigned mobile-friendly website which is scheduled to launch in the first half of 2021. The website redesign is being done by Loyal Design.
FAM’s upcoming events (including in-person gatherings, when safe) will focus on education, as well as community outreach and engagement.
‘HEAR OUR STORIES’ PROJECT ATTRACTS AWARD-WINNING TALENT
HEAR Our STORIES, FAM’s new audio recordings project, in partnership with the hugely-popular and moving @TheAIDSMemorial on Instagram, features people telling stories in their own words, as well as actors and other celebrities such as Jim Parsons, Sterling K. Brown, Billy Porter, Sheryl Lee Ralph and Christopher Wheeldon (shown above, left to right) recording stories, about lost loved ones, survivors, activists, community leaders and caregivers. Click this link to listen to one of the audio stories, this one by Elsa Sjunneson about her father, an artist and AIDS educator who died when she was 8 years old.
FAM has collected over 30 HEAR Our STORIES recordings so far. We plan to record 100 or more stories by the time the Monument opens, and will continue to produce audio recordings thereafter, building a robust library of important, emotional stories.
We are proud to announce that Emmy and Golden Globe winner Jim Parsons (“Big Bang Theory,” “The Normal Heart,” “Boys in the Band”) recorded a posting about Ryan White. Emmy and Golden Globe winner Sterling K. Brown (“This is Us,” “The People vs. O.J. Simpson”) will record a posting about MLB player Glenn Burke.
Emmy and Tony winner Billy Porter (“Pose,” “Kinky Boots”) will record a posting about about ‘the Queen of Disco’ Sylvester. Tony-winner Sheryl Lee Ralph (“Dreamgirls,” “Moesha”) recorded a story about poet and performer Assotto Saint. Tony-winning choreographer and stage director Christopher Wheeldon (“An American in Paris”) will record a posting about Rudolph Nureyev.
FAM has made requests to other notable actors. We will let you know about further developments in subsequent newsletters.
NEW FAM OFFICERS AND BOARD MEMBERS
In our December Board of Directors meeting, FAM elected a new slate of officers: Irwin M. Rappaport (Chair), Phill Wilson (Vice Chair & Chief Diversity Officer), Craig Dougherty (Treasurer) and Christina Tangalakis (Secretary).
FAM also recently welcomed four new Board members: Abdi Nazemian, Lane Janger, Barry Dale Johnson and Colin Gaul.
Irwin M. Rappaport, who recently retired from the practice of entertainment law, is our new Chair, replacing Mark E. Lehman who stepped down after many years of tireless leadership. Among other achievements during Mark’s tenure, FAM hired the artist Daniel Tobin and design firm UAP, raised millions of dollars and closed our capital campaign, completed the design for the AIDS Monument, and finalized the new MOU with the City of West Hollywood.
Phill Wilson, founder of the Black AIDS Institute, is our new Vice-Chair and will also serve in the newly-created position of Chief Diversity Officer. Craig Dougherty has relocated to the desert and continues as our longstanding, hard-working Treasurer. Christina Tangalakis, Associate Dean of Student Financial Aid Services at Glendale Community College, is our new Secretary, replacing J. Hobart who will continue to serve as Chair of our Governance Committee.
In November 2020, FAM welcomed two new Board members: novelist and screenwriter Abdi Nazemian, and film director-turned-therapist Lane Janger, both of whom have jumped in with both feet to get to work on projects to create digital content (and this newsletter!) for our Stories committee.
Asked what motivated them to join FAM’s Board, Nazemian said, “I believe deeply in the importance of honoring and celebrating those who fought so we could inherit a better world. Only through an understanding of where we came from can we find the right path forward. I’m honored to join the board of an organization whose mission of remembering, celebrating and educating feels very close to my heart.”
Janger said: “The day I heard about STORIES in 2015, I called John Gile and told him I wanted to be involved. To now be on the board is a real honor. Having lost some dear friends during the AIDS crisis, I love that their impact on me might now influence the way thousands of very important personal stories are told and remembered.”
In December 2020, Karen Andros Eyres (pictured at right) joined FAM’s staff as our new Administrative Assistant. Karen comes to us after working as Administrative Director of Groundworks Campaigns, as a Staff Member for the Westside Democratic Headquarters, and as Office Manager of Citizens of the Worlds Charter Schools.
“As a civically engaged West Hollywood resident, it’s very rewarding to be part of the team bringing The AIDS Monument to fruition,” Eyres said. “It’s going to be a very special place, unlike anything else.”
In January 2021, FAM was fortunate to add two additional Board members: Barry Dale Johnson, Senior VP of National Publicity at Searchlight Pictures, and Colin Gaul, a Global Creative Director at Amazon and former VP and Creative Director at MTV & Logo.
“As a longtime member of West Hollywood Aquatics, the land under the future Monument has been a home of sorts for most of my adult life while I found myself as a gay man leaving Texas,” said Barry Dale Johnson. “The team has been a wonderfully fulfilling source of history and identity, and so much of the Monument pays tribute to those before us and helps educate those who come after us. It is such a key part of future generations.”
Colin Gaul said, “It’s always been my belief that a person is not defined solely by the stories they tell, but also by stories told about them. I am inspired by FAM’s work to dignify the narratives and experiences of our community and I am excited to join as a Board Member.”
Gaul added, “I look forward to working alongside FAM in the preservation, promotion, and celebration of the stories of those effected by the AIDS pandemic and those who have and continue to fight to bring it to an end.”
We were sorry to see Mark Itkin and Michael Nutt step down as members of the Board in December 2020 and January 2021, respectively, and we thank them for their many years of generous and valuable Board service.
COVID-19 AND PEOPLE LIVING WITH HIV
I hope that you will enjoy reading this inaugural column on the interaction between HIV and COVID-19.
Disclaimer: This document is not intended to provide medical advice.
Please contact your health care provider or clinic for medical advice and guidance.
COVID-19 & HIV Questions & Answers
Are people with HIV at higher risk for catching or becoming ill from COVID-19?
Although not entirely conclusive, most of the information available on COVID-19 and people with HIV confirms that people with HIV who are taking antiretroviral medication and have suppressed viral loads are neither more susceptible nor at higher risk for becoming ill or dying due to COVID-19 than HIV-negative people.
However, it is important to note that people with HIV who are older (> 50-years-old) and/or who have poorly controlled HIV, as well as other conditions like heart, lung or kidney disease, or diabetes, should be cautious.
To learn more, check out the CDC’s COVID-19: What People with HIV Should Know .
Should I see my HIV doctor or medical provider during the outbreak?
Many healthcare providers, including HIV doctors and clinics, are having telephone, telehealth or video visits with their patients so they do not have to come into the clinic. If you are not feeling well and need to see your healthcare provider in person, for your own protection, call before going to the clinic.
Should I still get my regular lab work done?
Contact your healthcare provider if you are due for lab work. If your viral load has been well-suppressed (undetectable) and you are not having any health issues, your healthcare provider may delay your routine medical monitoring for up to six to nine months. See COVID-19 Considerations for People with HIV for more information.
Do my HIV medications protect me from catching COVID-19?
There is no information that demonstrates that HIV medications can prevent or treat COVID-19. In fact, studies of two protease inhibitors, Kaletra® and Prezista®, have shown that they do not have any treatment benefit for people with COVID-19. Similarly, studies of Truvada® (which is in the same class of drugs as Remdesivir, an FDA-approved treatment for COVID-19) have not shown conclusive evidence of preventing or treating COVID-19. Read more in the CDC’s What to Know About HIV and COVID-19.
More information on HIV treatment recommendations and COVID-19 is available in the HHS Interim Guidance on COVID-19 and Persons with HIV.
I’m HIV-positive. What if I need to be hospitalized and require critical care because of COVID-19?
If you experience severe COVID-19 symptoms and need to be hospitalized, it is important that your hospital medical team be aware of your HIV status, your medical history regarding HIV, and the HIV medications you are taking. Continuing your HIV care in the hospital will be essential to your COVID-19 recovery.
Initially, there was some concern that people living with HIV may not receive the same COVID-19 care as those in the general population, notably that they may be denied access to a ventilator if a hospital needs to ration critical care. Fortunately, however, there has been no evidence of this nor cases that demonstrate such. The HIV Medicine Association (HIVMA) updated their COVID-19: Special Considerations for People Living with HIV stressing that people living with HIV have a normal life expectancy and:
- HIV status should not be a factor in medical decision-making regarding life-saving intervention decisions (for example, ventilator use) or enrollment into clinical trials; and
- Care and treatment for COVID-19 in people living with HIV should follow the same protocols advised for patients without HIV.
People with HIV who have COVID-19 should receive the same medical care as anyone with COVID-19.
What can I do if I think I may have trouble getting the right care because of my HIV status?
Lambda Legal and The AIDS Institute created Know Your Rights: COVID-19 and HIV to help. The resource is available in English and Spanish. You also may want to share it with your family and friends.
I think I may be HIV-positive, and I’d like to get tested.
Your ongoing health is important, especially during the COVID-19 pandemic. If you wish to do so, you should get an HIV test as soon as possible. If you are HIV-negative, there are options to prevent you from acquiring HIV, like pre-exposure prophylaxis (PrEP). If you test HIV-positive, highly effective treatments are available. Starting HIV treatment as early as possible after you are diagnosed – even the same day – can help you live a full and healthy life and prevent you from transmitting HIV to your sexual partners.
Where you can get an HIV test may vary depending on where you live. Try calling your doctor’s office, your local or state health department, or HIV organizations in your area and ask if it’s possible to get an HIV test. They will discuss with you the procedures to follow for getting a test as well as follow-up services. Home HIV tests are also available for purchase at your local drugstores or on Amazon for under $40.
I know I’m HIV-positive, and I want to get care and treatment services.
Your ongoing health is important, especially during the COVID-19 pandemic. A variety of healthcare services and highly effective treatments are available. Starting HIV treatment as early as possible after you’re diagnosed can help you live a full and healthy life, achieve well-suppressed (undetectable) viral load and prevent you from transmitting HIV to your sexual partners.
Where to find care and treatment services may vary depending on where you live. While many doctors’ offices, clinics, and HIV-service organizations may still have reduced or limited in-person services due to the COVID-19 crisis, telehealth (phone or video consultations), virtual benefits determinations and applications (including AIDS Drug Assistance Program enrollment) and laboratory services are often available. Try calling your doctor’s office, your local or state health department, or HIV organizations in your area and ask if it’s possible to begin services or start taking HIV medication. They will discuss with you the procedures to follow for beginning services and getting medication.
Check here to find a Ryan White Program provider in your area or call your local or state health department and explain to them you are HIV positive and would like to begin services and start HIV treatment.
Can I still access pre-exposure prophylaxis (PrEP)?
Many PrEP clinics are providing services using telehealth to meet with patients. PrEP providers may meet with you virtually on the phone or computer and then recommend that you go to a free-standing lab for HIV and STD screening or may order a home testing kit. Once confirmed to be HIV negative, CDC recommends that providers prescribe patients a 90-day supply of PrEP medication. The Ready, Set, PrEP program provides free PrEP medications to individuals without health insurance and assistance also is available through Gilead’s Advancing Access Program. The National Prevention Information Network has an online PrEP directory for help locating a PrEP clinic. Additional guidance on managing PrEP during the pandemic is available in a letter sent by the CDC to healthcare providers.
HIV MEDICATION ACCESS
What do I need to know about my HIV or other important medications during the COVID-19 crisis?
It is particularly important to keep taking your HIV medications as prescribed by your healthcare provider. It is also important to continue taking any other medications prescribed to prevent or treat other diseases or health problems.
At the same time, it is very important for all people to reduce their risk of contracting or spreading COVID-19 by following isolation requirements and social/physical distancing recommendations. This includes staying at home and avoiding public spaces (including pharmacies) as much as possible.
Is it safe to have sex during the outbreak?
Since the coronavirus is spread from person-to-person contact by droplets such as saliva or mucus, the safest approach during the outbreak is to not have sex with anyone else (except yourself). Limiting sex to your live-in or regular partner is safer sex during the pandemic. For safe sex tips and information, check out the New York City Health Department’s fact sheet on COVID-19 and sex, this one from the District of Columbia Department of Health, and this resource from The Well Project.
Most dating apps are also recommending that you not have sex with people outside of your household. Using dating apps to socialize and stay in touch with people without physically connecting with them is safe to do!
I am in recovery from an addiction. What should I do during this time?
It is important to continue your recovery plan if at all possible, during periods of physical or social isolation. Many recovery groups and 12-step programs have put in place online meetings. Check with your program’s website for more information and also be sure to check in with your mental health or substance use/recovery professional if at all possible.
Here’s a resource for people in recovery that you may find helpful.
Other important resources include this guide on COVID-19 for trans people from the National Center for Transgender Equality, these downloadable materials and messages from Greater Than AIDS, and an article in The Body.
Note from Dr. Hardy: I joined the FAM Board of Directors in June 2020. I returned home to Los Angeles after 4-years living in Washington, D.C., with my partner Barry, where I served as Senior Director of Research at Whitman-Walker Health. Having lived and worked as an HIV physician and researcher in Los Angeles since the early 1980s at UCLA, Cedars-Sinai and private practice, it was a treat to return to L.A.
PHOTO20 AUCTION RAISES SIGNIFICANT FUNDS
After many years of successful in-person photo auctions, FAM pivoted during the COVID-19 pandemic to an online auction event for Photo20 and collected nearly $45,000 in net income.
Held November 10-24, 2020, the auction was conducted by online auction company Artsy. It featured dozens of works by esteemed photographers including Diane Arbus, Wolfgang Tillmans, Herb Ritts, John Baldessari, Ed Ruscha, Antonio Lopez, Annie Leibovitz, Greg Gorman, Firooz Zahedi, Norman Seeff, and Nick Ut. A total of thirty photographs were sold.
Big thanks to our Photo20 committee members Paris Chong, John Gile, Willie Maldonado, Matthew Lowe, Pat Lanza, Craig Dougherty, Kipton Cronkite and Michael Maloney. (shown left, Herb Ritts’ photo of k.d. Lang, 1989)
SPOTLIGHT: BROADWAY CARES/EQUITY FIGHTS AIDS
The pandemic and the shutdown of Broadway shows hasn’t stopped one of FAM’s major donors, Broadway Cares/Equity Fights AIDS (BC/EFA), from raising and donating record-setting amounts of money or producing most of its signature events online.
BC/EFA, which donated $50,000 to FAM, supports HIV/AIDS organizations and helps men, women and children across the country to receive life-saving medications, health care, nutritious meals, counseling and emergency financial assistance.
BC/EFA donated a record $18.1 million in grants in fiscal year 2020, up 22% from the prior record-setting year, despite seven months of that fiscal year being consumed by a pandemic during which they could not collect money from theatre audiences.
By drawing upon the talents, resources and generosity of the American theatre community, BC/EFA has raised more than $300 million since 1988 for essential services for people with HIV/AIDS and other critical illnesses and for the social service programs at The Actors Fund.
Earlier this month, FAM’s Irwin Rappaport spoke via Zoom with BC/EFA Executive Director Tom Viola (shown right).
Tom, this is your 25th anniversary year as Executive Director. How did you first get involved with the organization and what’s your personal story around HIV and AIDS?
I moved to town [New York City] in 1976 to be an actor like everyone else. Kids we work with now can’t imagine what it was like then. Being gay but, with few exceptions, not being out. Sexual liberation, parties, feeling our oats. That all changed with the advent of AIDS in 1981.
First there was the New York Times article with the headline “Rare cancer Seen in 41 Homosexuals.” Then in 1982, I was walking up Broadway near where I live and saw a dancer friend, a very handsome and popular guy, coming towards me. As we got closer, I could see he didn’t look well. He looked drawn, ashen and tired. I could also see that he didn’t want to acknowledge me. He kept his eyes in front so that our eyes never met, so that we wouldn’t talk. We walked right past each other.
I thought, “Oh my God, Richard’s sick.”
That was the first time I couldn’t deny any longer that the disease would affect me and friends around my age.
In 1984, I went to brunch with a group of seven friends, all of us were making our way early in our Broadway careers. We started what would become a familiar conversation among gay men at the time (“Have you heard about….?”), but we still could feel that it was happening more to other people than to us.
Ten years later, four of the eight men were dead and two of them, including me, were HIV positive. In 1988, I worked for Equity Fights AIDS and as assistant to Actors Equity President Colleen Dewhurst, who was determined that EFA find roots in our community because there was such distress.
What are some of the challenges and issues today?
Today, you can’t say AIDS is no longer an issue. AIDS is still a deadly disease for those in the country. You can’t get the life-saving medications if you aren’t receiving Medicare or if you’re uninsured because your state’s governor “brilliantly” decided not to provide it for you or you can’t afford it.
We respond to what is most important to the community in the moment, whether its COVID, through funding of the COVID Emergency Assistance Fund, or injustice or inequality by funding Black Lives Matter.
We were the first funder of the U=U project by Bruce Richmond, and when the CDC supported the finding, we began to promote that an undetectable viral load means that you can’t transmit the virus to others.
Broadway Cares manages to produce events filled with joy, laughter and playfulness in your fundraising for HIV/AIDS. Was that intentional?
Celebrating who we are, even in the midst of what is intense sorrow, anger and confusion, particularly in the first decade, that’s what sets us apart. It’s in the nature of theatre folk.
“Broadway Bares” is a great example. Jerry Mitchell dancing on the bar at Splash is where it began. It celebrates our bodies, in a safe, sexy and playful way, while helping people whose bodies are giving them tremendous problems.
There have been many moving moments at events, such as “Gypsy of the Year” and the Easter Bonnet competition, but there have been many more that are indeed joyous, celebratory and pretty damn funny.
Are there any individual stories you’d like to share about how these grants have helped particular families, people or organizations — stories that are particularly gratifying and remind you why this work is so important?
There’s one thank-you that I always remember. In the very early days of our work, 1990, an actor named Nick Pippin sent me a note. Nick had received help from us via The Actors Fund and wrote: “You’ve made this atheist believe again in angels.”
From Vicky, a grateful client of North Idaho AIDS Coalition in Coeur d’Alene, ID: “Because of your support, I’m not overwhelmed with all the things that come with managing this illness emotionally and physically. Because of you, I have a place that I can go that will look at all of my needs, help me prioritize them and make a plan with me. It means I can help myself; you’re helping me help myself.”
Ed, a client of Mama’s Kitchen, San Diego, CA, explains: “My medication has to come with a meal, otherwise it will be ineffective. And thanks to you I’m able to get a meal here in San Diego and this support is crucial to my survival.”
Sara Brewer, executive director of Face to Face, Santa Rosa, CA, said: “Times are hard for us as we’ve had to cancel two – maybe three – of our fundraisers, and they’re the big ones. Every dollar counts and this is going to go a long way to help our clients living with HIV stay engaged in care and safe during this crazy time. Thank you again, and for all you and your team is doing for organizations like ours throughout the country.”
AIDS QUILT PANELS EXHIBITED ON WORLD AIDS DAY
The National AIDS Memorial Grove marked World AIDS Day with a virtual exhibition of the AIDS Memorial Quilt that featured more than 10,000 panels, chosen by partners that included STORIES: The AIDS Monument.
The Quilt was conceived in 1985 by activist Cleve Jones and first displayed in 1987 during the National March on Washington for Lesbian and Gay Rights.
STORIES’ Development Committee Chair Jorge Mellado explained that “the National AIDS Memorial reached out to us about this wonderful partnership opportunity to reflect and remember.”
The STORIES panels were chosen by West Hollywood Mayor Lindsey P. Horvath and FAM Board member Dr. W. David Hardy.
“So many people make up the story of our City’s experience with AIDS that it was difficult to choose only a few,” Mayor Horvath said. “The panels I chose [Thomas Crail, Clayton Griffin, Sheldon Andelson, Marc Bliefield and Tom Proctor] represent people who were instrumental to creating our City.”
Among the panels Dr. Hardy selected were panels representing two men he provided care for: singer-songwriter Peter Allen and Alan Peterson. Dr. Hardy said that Allen’s “bright, high-energy music remains to remind us of a happier, more carefree time,” and credited Peterson with teaching him “resiliency and passion in the face of grave adversity.”
In a time of challenge and isolation, the Virtual Quilt Exhibition served as a reminder of the importance of collective grief and collective celebration of life. The exhibition can be viewed online through March 31, 2021.
“The Virtual Quilt Exhibition makes accessible an important telling of the stories that make up the lives of people who were impacted by AIDS,” said Mayor Horvath. “The Exhibition not only helps us to know and remember their stories, but also helps to educate future generations.”
FORUM EXPLORES COVID-19 & AIDS
On World AIDS Day, the National AIDS Memorial presented a national online conversation about a new pandemic, COVID-19, which overshadowed the usual discussion on World AIDS Day about HIV and AIDS.
Hosted by Judith Light, the speakers included New York City Mayor Bill de Blasio, Chicago Mayor Lori Lightfoot, Long Beach Mayor Robert Garcia, Black Lives Matter Co-Founder Alicia Garza, AIDS Memorial Quilt Founder Cleve Jones, Human Rights Campaign President Alphonso David, Dr. David Ho, and Dr. Anthony Fauci. FAM was proud to be a Community Sponsor of the forum.
Although online communication is not new to the national conversation that happens every World AIDS Day, this year’s topics for discussion were quite different.
While discussions in previous years were focused primarily on memorializing those lost, battling stigma, as well as sharing news of new HIV developments, breakthroughs, treatments and prevention, this year’s forum focused largely on the appalling loss and government response to Covid-19: its impact on marginalized communities, activism and how it sparks change and movements, and medical and scientific advancements.
Not only did top HIV experts discuss the virus’s impact on those with HIV, but they also shared lessons learned from HIV that are applicable to the current pandemic. It was apparent to attendees that in order to develop a COVID-19 vaccine “at warp speed,” our nation turned to the many doctors, scientists and researchers who spent much of their careers seeking cures and life-saving treatment for HIV and AIDS.
Please watch this inspiring 3-hour forum with leading voices from both the AIDS and the COVID-19 pandemics.
Latest News
Remember. Celebrate. Educate.
MESSAGE FROM THE BOARD CHAIR
As we enter 2021 with renewed optimism and with an end in sight for the global pandemic, the Foundation for The AIDS Monument (“FAM”) wishes you a Happy New Year and thanks you for your past support.
This newsletter will be published quarterly starting this year, so that we can regularly bring you news of FAM’s activities and achievements. I’m proud to be able to devote significant time to FAM matters as a newly-retired entertainment lawyer and as the new Chair of the Board of Directors. I have big shoes to fill in succeeding my good friend of over 30 years, Mark Lehman.
As FAM embarks on its new “Digital Monument” venture (more on that below), we hope that you will consider additional donations and will participate in some of the online and, eventually, live events that FAM has in store for 2021.
One of my goals as the new Board Chair is more consistent communication with our supporters so that you know what we’re up to and where your donations are being invested. I’m excited to help shepherd FAM’s transition from a successful capital campaign into collecting and telling stories that speak to our mission and that continue to motivate us to build STORIES: the AIDS Monument:
This Monument:
Remembers those we lost, those who survived, the protests and vigils, the caregivers
Celebrates those who step up when others step away
Educates future generations from lessons learned
Warmest regards,
Irwin M. Rappaport
MONUMENT FUNDING AGREEMENT REACHED WITH CITY OF WEHO
We are pleased to announce that on November 16, 2020, FAM entered into a revised Memorandum of Understanding (“MOU”) with the City of West Hollywood in which FAM agreed to donate to the City the sum of $2.43 million in exchange for the City agreeing to take over the fabrication and installation of STORIES: The AIDS Monument in West Hollywood Park, and to pay the balance of up to $2.57 million in future costs associated with the Monument.
The City will hire a design-build contractor to oversee the fabrication and installation of the Monument, with installation currently anticipated to occur by December 2022.
Many thanks to Oscar Delgado, Steve Campbell, Ric Abramson and Michael Jenkins on behalf of the City, and Mark Lehman, Craig Dougherty, Rogerio Carvalhiero, Irwin Rappaport, and former FAM Executive Director Tony Valenzuela for their time and effort in bringing about the revised MOU.
THE ‘DIGITAL MONUMENT’
Now that FAM’s capital campaign for the physical monument is complete, FAM can focus on fundraising and producing what we call our “Digital Monument”:
- recording interviews with survivors, activists, community leaders and caregivers;
- collecting diverse stories from the public;
- building a timeline of significant events related to HIV/AIDS;
- capturing video footage from FAM’s events;
- producing an audio tour for visitors to the Monument; and
- creating audio recordings of selected postings on The AIDS Memorial on Instagram (@TheAIDSMemorial) so that stories of loss, resilience, activism and community can be heard while walking through the monument
The Digital Monument’s collection of stories will be housed in FAM’s redesigned mobile-friendly website which is scheduled to launch in the first half of 2021. The website redesign is being done by Loyal Design.
FAM’s upcoming events (including in-person gatherings, when safe) will focus on education, as well as community outreach and engagement.
‘HEAR OUR STORIES’ PROJECT ATTRACTS AWARD-WINNING TALENT
HEAR Our STORIES, FAM’s new audio recordings project, in partnership with the hugely-popular and moving @TheAIDSMemorial on Instagram, features people telling stories in their own words, as well as actors and other celebrities such as Jim Parsons, Sterling K. Brown, Billy Porter, Sheryl Lee Ralph and Christopher Wheeldon (shown above, left to right) recording stories, about lost loved ones, survivors, activists, community leaders and caregivers. Click this link to listen to one of the audio stories, this one by Elsa Sjunneson about her father, an artist and AIDS educator who died when she was 8 years old.
FAM has collected over 30 HEAR Our STORIES recordings so far. We plan to record 100 or more stories by the time the Monument opens, and will continue to produce audio recordings thereafter, building a robust library of important, emotional stories.
We are proud to announce that Emmy and Golden Globe winner Jim Parsons (“Big Bang Theory,” “The Normal Heart,” “Boys in the Band”) recorded a posting about Ryan White. Emmy and Golden Globe winner Sterling K. Brown (“This is Us,” “The People vs. O.J. Simpson”) will record a posting about MLB player Glenn Burke.
Emmy and Tony winner Billy Porter (“Pose,” “Kinky Boots”) will record a posting about about ‘the Queen of Disco’ Sylvester. Tony-winner Sheryl Lee Ralph (“Dreamgirls,” “Moesha”) recorded a story about poet and performer Assotto Saint. Tony-winning choreographer and stage director Christopher Wheeldon (“An American in Paris”) will record a posting about Rudolph Nureyev.
FAM has made requests to other notable actors. We will let you know about further developments in subsequent newsletters.
NEW FAM OFFICERS AND BOARD MEMBERS
In our December Board of Directors meeting, FAM elected a new slate of officers: Irwin M. Rappaport (Chair), Phill Wilson (Vice Chair & Chief Diversity Officer), Craig Dougherty (Treasurer) and Christina Tangalakis (Secretary).
FAM also recently welcomed four new Board members: Abdi Nazemian, Lane Janger, Barry Dale Johnson and Colin Gaul.
Irwin M. Rappaport, who recently retired from the practice of entertainment law, is our new Chair, replacing Mark E. Lehman who stepped down after many years of tireless leadership. Among other achievements during Mark’s tenure, FAM hired the artist Daniel Tobin and design firm UAP, raised millions of dollars and closed our capital campaign, completed the design for the AIDS Monument, and finalized the new MOU with the City of West Hollywood.
Phill Wilson, founder of the Black AIDS Institute, is our new Vice-Chair and will also serve in the newly-created position of Chief Diversity Officer. Craig Dougherty has relocated to the desert and continues as our longstanding, hard-working Treasurer. Christina Tangalakis, Associate Dean of Student Financial Aid Services at Glendale Community College, is our new Secretary, replacing J. Hobart who will continue to serve as Chair of our Governance Committee.
In November 2020, FAM welcomed two new Board members: novelist and screenwriter Abdi Nazemian, and film director-turned-therapist Lane Janger, both of whom have jumped in with both feet to get to work on projects to create digital content (and this newsletter!) for our Stories committee.
Asked what motivated them to join FAM’s Board, Nazemian said, “I believe deeply in the importance of honoring and celebrating those who fought so we could inherit a better world. Only through an understanding of where we came from can we find the right path forward. I’m honored to join the board of an organization whose mission of remembering, celebrating and educating feels very close to my heart.”
Janger said: “The day I heard about STORIES in 2015, I called John Gile and told him I wanted to be involved. To now be on the board is a real honor. Having lost some dear friends during the AIDS crisis, I love that their impact on me might now influence the way thousands of very important personal stories are told and remembered.”
In December 2020, Karen Andros Eyres (pictured at right) joined FAM’s staff as our new Administrative Assistant. Karen comes to us after working as Administrative Director of Groundworks Campaigns, as a Staff Member for the Westside Democratic Headquarters, and as Office Manager of Citizens of the Worlds Charter Schools.
“As a civically engaged West Hollywood resident, it’s very rewarding to be part of the team bringing The AIDS Monument to fruition,” Eyres said. “It’s going to be a very special place, unlike anything else.”
In January 2021, FAM was fortunate to add two additional Board members: Barry Dale Johnson, Senior VP of National Publicity at Searchlight Pictures, and Colin Gaul, a Global Creative Director at Amazon and former VP and Creative Director at MTV & Logo.
“As a longtime member of West Hollywood Aquatics, the land under the future Monument has been a home of sorts for most of my adult life while I found myself as a gay man leaving Texas,” said Barry Dale Johnson. “The team has been a wonderfully fulfilling source of history and identity, and so much of the Monument pays tribute to those before us and helps educate those who come after us. It is such a key part of future generations.”
Colin Gaul said, “It’s always been my belief that a person is not defined solely by the stories they tell, but also by stories told about them. I am inspired by FAM’s work to dignify the narratives and experiences of our community and I am excited to join as a Board Member.”
Gaul added, “I look forward to working alongside FAM in the preservation, promotion, and celebration of the stories of those effected by the AIDS pandemic and those who have and continue to fight to bring it to an end.”
We were sorry to see Mark Itkin and Michael Nutt step down as members of the Board in December 2020 and January 2021, respectively, and we thank them for their many years of generous and valuable Board service.
COVID-19 AND PEOPLE LIVING WITH HIV
I hope that you will enjoy reading this inaugural column on the interaction between HIV and COVID-19.
Disclaimer: This document is not intended to provide medical advice.
Please contact your health care provider or clinic for medical advice and guidance.
COVID-19 & HIV Questions & Answers
Are people with HIV at higher risk for catching or becoming ill from COVID-19?
Although not entirely conclusive, most of the information available on COVID-19 and people with HIV confirms that people with HIV who are taking antiretroviral medication and have suppressed viral loads are neither more susceptible nor at higher risk for becoming ill or dying due to COVID-19 than HIV-negative people.
However, it is important to note that people with HIV who are older (> 50-years-old) and/or who have poorly controlled HIV, as well as other conditions like heart, lung or kidney disease, or diabetes, should be cautious.
To learn more, check out the CDC’s COVID-19: What People with HIV Should Know .
Should I see my HIV doctor or medical provider during the outbreak?
Many healthcare providers, including HIV doctors and clinics, are having telephone, telehealth or video visits with their patients so they do not have to come into the clinic. If you are not feeling well and need to see your healthcare provider in person, for your own protection, call before going to the clinic.
Should I still get my regular lab work done?
Contact your healthcare provider if you are due for lab work. If your viral load has been well-suppressed (undetectable) and you are not having any health issues, your healthcare provider may delay your routine medical monitoring for up to six to nine months. See COVID-19 Considerations for People with HIV for more information.
Do my HIV medications protect me from catching COVID-19?
There is no information that demonstrates that HIV medications can prevent or treat COVID-19. In fact, studies of two protease inhibitors, Kaletra® and Prezista®, have shown that they do not have any treatment benefit for people with COVID-19. Similarly, studies of Truvada® (which is in the same class of drugs as Remdesivir, an FDA-approved treatment for COVID-19) have not shown conclusive evidence of preventing or treating COVID-19. Read more in the CDC’s What to Know About HIV and COVID-19.
More information on HIV treatment recommendations and COVID-19 is available in the HHS Interim Guidance on COVID-19 and Persons with HIV.
I’m HIV-positive. What if I need to be hospitalized and require critical care because of COVID-19?
If you experience severe COVID-19 symptoms and need to be hospitalized, it is important that your hospital medical team be aware of your HIV status, your medical history regarding HIV, and the HIV medications you are taking. Continuing your HIV care in the hospital will be essential to your COVID-19 recovery.
Initially, there was some concern that people living with HIV may not receive the same COVID-19 care as those in the general population, notably that they may be denied access to a ventilator if a hospital needs to ration critical care. Fortunately, however, there has been no evidence of this nor cases that demonstrate such. The HIV Medicine Association (HIVMA) updated their COVID-19: Special Considerations for People Living with HIV stressing that people living with HIV have a normal life expectancy and:
- HIV status should not be a factor in medical decision-making regarding life-saving intervention decisions (for example, ventilator use) or enrollment into clinical trials; and
- Care and treatment for COVID-19 in people living with HIV should follow the same protocols advised for patients without HIV.
People with HIV who have COVID-19 should receive the same medical care as anyone with COVID-19.
What can I do if I think I may have trouble getting the right care because of my HIV status?
Lambda Legal and The AIDS Institute created Know Your Rights: COVID-19 and HIV to help. The resource is available in English and Spanish. You also may want to share it with your family and friends.
I think I may be HIV-positive, and I’d like to get tested.
Your ongoing health is important, especially during the COVID-19 pandemic. If you wish to do so, you should get an HIV test as soon as possible. If you are HIV-negative, there are options to prevent you from acquiring HIV, like pre-exposure prophylaxis (PrEP). If you test HIV-positive, highly effective treatments are available. Starting HIV treatment as early as possible after you are diagnosed – even the same day – can help you live a full and healthy life and prevent you from transmitting HIV to your sexual partners.
Where you can get an HIV test may vary depending on where you live. Try calling your doctor’s office, your local or state health department, or HIV organizations in your area and ask if it’s possible to get an HIV test. They will discuss with you the procedures to follow for getting a test as well as follow-up services. Home HIV tests are also available for purchase at your local drugstores or on Amazon for under $40.
I know I’m HIV-positive, and I want to get care and treatment services.
Your ongoing health is important, especially during the COVID-19 pandemic. A variety of healthcare services and highly effective treatments are available. Starting HIV treatment as early as possible after you’re diagnosed can help you live a full and healthy life, achieve well-suppressed (undetectable) viral load and prevent you from transmitting HIV to your sexual partners.
Where to find care and treatment services may vary depending on where you live. While many doctors’ offices, clinics, and HIV-service organizations may still have reduced or limited in-person services due to the COVID-19 crisis, telehealth (phone or video consultations), virtual benefits determinations and applications (including AIDS Drug Assistance Program enrollment) and laboratory services are often available. Try calling your doctor’s office, your local or state health department, or HIV organizations in your area and ask if it’s possible to begin services or start taking HIV medication. They will discuss with you the procedures to follow for beginning services and getting medication.
Check here to find a Ryan White Program provider in your area or call your local or state health department and explain to them you are HIV positive and would like to begin services and start HIV treatment.
Can I still access pre-exposure prophylaxis (PrEP)?
Many PrEP clinics are providing services using telehealth to meet with patients. PrEP providers may meet with you virtually on the phone or computer and then recommend that you go to a free-standing lab for HIV and STD screening or may order a home testing kit. Once confirmed to be HIV negative, CDC recommends that providers prescribe patients a 90-day supply of PrEP medication. The Ready, Set, PrEP program provides free PrEP medications to individuals without health insurance and assistance also is available through Gilead’s Advancing Access Program. The National Prevention Information Network has an online PrEP directory for help locating a PrEP clinic. Additional guidance on managing PrEP during the pandemic is available in a letter sent by the CDC to healthcare providers.
HIV MEDICATION ACCESS
What do I need to know about my HIV or other important medications during the COVID-19 crisis?
It is particularly important to keep taking your HIV medications as prescribed by your healthcare provider. It is also important to continue taking any other medications prescribed to prevent or treat other diseases or health problems.
At the same time, it is very important for all people to reduce their risk of contracting or spreading COVID-19 by following isolation requirements and social/physical distancing recommendations. This includes staying at home and avoiding public spaces (including pharmacies) as much as possible.
Is it safe to have sex during the outbreak?
Since the coronavirus is spread from person-to-person contact by droplets such as saliva or mucus, the safest approach during the outbreak is to not have sex with anyone else (except yourself). Limiting sex to your live-in or regular partner is safer sex during the pandemic. For safe sex tips and information, check out the New York City Health Department’s fact sheet on COVID-19 and sex, this one from the District of Columbia Department of Health, and this resource from The Well Project.
Most dating apps are also recommending that you not have sex with people outside of your household. Using dating apps to socialize and stay in touch with people without physically connecting with them is safe to do!
I am in recovery from an addiction. What should I do during this time?
It is important to continue your recovery plan if at all possible, during periods of physical or social isolation. Many recovery groups and 12-step programs have put in place online meetings. Check with your program’s website for more information and also be sure to check in with your mental health or substance use/recovery professional if at all possible.
Here’s a resource for people in recovery that you may find helpful.
Other important resources include this guide on COVID-19 for trans people from the National Center for Transgender Equality, these downloadable materials and messages from Greater Than AIDS, and an article in The Body.
Note from Dr. Hardy: I joined the FAM Board of Directors in June 2020. I returned home to Los Angeles after 4-years living in Washington, D.C., with my partner Barry, where I served as Senior Director of Research at Whitman-Walker Health. Having lived and worked as an HIV physician and researcher in Los Angeles since the early 1980s at UCLA, Cedars-Sinai and private practice, it was a treat to return to L.A.
PHOTO20 AUCTION RAISES SIGNIFICANT FUNDS
After many years of successful in-person photo auctions, FAM pivoted during the COVID-19 pandemic to an online auction event for Photo20 and collected nearly $45,000 in net income.
Held November 10-24, 2020, the auction was conducted by online auction company Artsy. It featured dozens of works by esteemed photographers including Diane Arbus, Wolfgang Tillmans, Herb Ritts, John Baldessari, Ed Ruscha, Antonio Lopez, Annie Leibovitz, Greg Gorman, Firooz Zahedi, Norman Seeff, and Nick Ut. A total of thirty photographs were sold.
Big thanks to our Photo20 committee members Paris Chong, John Gile, Willie Maldonado, Matthew Lowe, Pat Lanza, Craig Dougherty, Kipton Cronkite and Michael Maloney. (shown left, Herb Ritts’ photo of k.d. Lang, 1989)
SPOTLIGHT: BROADWAY CARES/EQUITY FIGHTS AIDS
The pandemic and the shutdown of Broadway shows hasn’t stopped one of FAM’s major donors, Broadway Cares/Equity Fights AIDS (BC/EFA), from raising and donating record-setting amounts of money or producing most of its signature events online.
BC/EFA, which donated $50,000 to FAM, supports HIV/AIDS organizations and helps men, women and children across the country to receive life-saving medications, health care, nutritious meals, counseling and emergency financial assistance.
BC/EFA donated a record $18.1 million in grants in fiscal year 2020, up 22% from the prior record-setting year, despite seven months of that fiscal year being consumed by a pandemic during which they could not collect money from theatre audiences.
By drawing upon the talents, resources and generosity of the American theatre community, BC/EFA has raised more than $300 million since 1988 for essential services for people with HIV/AIDS and other critical illnesses and for the social service programs at The Actors Fund.
Earlier this month, FAM’s Irwin Rappaport spoke via Zoom with BC/EFA Executive Director Tom Viola (shown right).
Tom, this is your 25th anniversary year as Executive Director. How did you first get involved with the organization and what’s your personal story around HIV and AIDS?
I moved to town [New York City] in 1976 to be an actor like everyone else. Kids we work with now can’t imagine what it was like then. Being gay but, with few exceptions, not being out. Sexual liberation, parties, feeling our oats. That all changed with the advent of AIDS in 1981.
First there was the New York Times article with the headline “Rare cancer Seen in 41 Homosexuals.” Then in 1982, I was walking up Broadway near where I live and saw a dancer friend, a very handsome and popular guy, coming towards me. As we got closer, I could see he didn’t look well. He looked drawn, ashen and tired. I could also see that he didn’t want to acknowledge me. He kept his eyes in front so that our eyes never met, so that we wouldn’t talk. We walked right past each other.
I thought, “Oh my God, Richard’s sick.”
That was the first time I couldn’t deny any longer that the disease would affect me and friends around my age.
In 1984, I went to brunch with a group of seven friends, all of us were making our way early in our Broadway careers. We started what would become a familiar conversation among gay men at the time (“Have you heard about….?”), but we still could feel that it was happening more to other people than to us.
Ten years later, four of the eight men were dead and two of them, including me, were HIV positive. In 1988, I worked for Equity Fights AIDS and as assistant to Actors Equity President Colleen Dewhurst, who was determined that EFA find roots in our community because there was such distress.
What are some of the challenges and issues today?
Today, you can’t say AIDS is no longer an issue. AIDS is still a deadly disease for those in the country. You can’t get the life-saving medications if you aren’t receiving Medicare or if you’re uninsured because your state’s governor “brilliantly” decided not to provide it for you or you can’t afford it.
We respond to what is most important to the community in the moment, whether its COVID, through funding of the COVID Emergency Assistance Fund, or injustice or inequality by funding Black Lives Matter.
We were the first funder of the U=U project by Bruce Richmond, and when the CDC supported the finding, we began to promote that an undetectable viral load means that you can’t transmit the virus to others.
Broadway Cares manages to produce events filled with joy, laughter and playfulness in your fundraising for HIV/AIDS. Was that intentional?
Celebrating who we are, even in the midst of what is intense sorrow, anger and confusion, particularly in the first decade, that’s what sets us apart. It’s in the nature of theatre folk.
“Broadway Bares” is a great example. Jerry Mitchell dancing on the bar at Splash is where it began. It celebrates our bodies, in a safe, sexy and playful way, while helping people whose bodies are giving them tremendous problems.
There have been many moving moments at events, such as “Gypsy of the Year” and the Easter Bonnet competition, but there have been many more that are indeed joyous, celebratory and pretty damn funny.
Are there any individual stories you’d like to share about how these grants have helped particular families, people or organizations — stories that are particularly gratifying and remind you why this work is so important?
There’s one thank-you that I always remember. In the very early days of our work, 1990, an actor named Nick Pippin sent me a note. Nick had received help from us via The Actors Fund and wrote: “You’ve made this atheist believe again in angels.”
From Vicky, a grateful client of North Idaho AIDS Coalition in Coeur d’Alene, ID: “Because of your support, I’m not overwhelmed with all the things that come with managing this illness emotionally and physically. Because of you, I have a place that I can go that will look at all of my needs, help me prioritize them and make a plan with me. It means I can help myself; you’re helping me help myself.”
Ed, a client of Mama’s Kitchen, San Diego, CA, explains: “My medication has to come with a meal, otherwise it will be ineffective. And thanks to you I’m able to get a meal here in San Diego and this support is crucial to my survival.”
Sara Brewer, executive director of Face to Face, Santa Rosa, CA, said: “Times are hard for us as we’ve had to cancel two – maybe three – of our fundraisers, and they’re the big ones. Every dollar counts and this is going to go a long way to help our clients living with HIV stay engaged in care and safe during this crazy time. Thank you again, and for all you and your team is doing for organizations like ours throughout the country.”
AIDS QUILT PANELS EXHIBITED ON WORLD AIDS DAY
The National AIDS Memorial Grove marked World AIDS Day with a virtual exhibition of the AIDS Memorial Quilt that featured more than 10,000 panels, chosen by partners that included STORIES: The AIDS Monument.
The Quilt was conceived in 1985 by activist Cleve Jones and first displayed in 1987 during the National March on Washington for Lesbian and Gay Rights.
STORIES’ Development Committee Chair Jorge Mellado explained that “the National AIDS Memorial reached out to us about this wonderful partnership opportunity to reflect and remember.”
The STORIES panels were chosen by West Hollywood Mayor Lindsey P. Horvath and FAM Board member Dr. W. David Hardy.
“So many people make up the story of our City’s experience with AIDS that it was difficult to choose only a few,” Mayor Horvath said. “The panels I chose [Thomas Crail, Clayton Griffin, Sheldon Andelson, Marc Bliefield and Tom Proctor] represent people who were instrumental to creating our City.”
Among the panels Dr. Hardy selected were panels representing two men he provided care for: singer-songwriter Peter Allen and Alan Peterson. Dr. Hardy said that Allen’s “bright, high-energy music remains to remind us of a happier, more carefree time,” and credited Peterson with teaching him “resiliency and passion in the face of grave adversity.”
In a time of challenge and isolation, the Virtual Quilt Exhibition served as a reminder of the importance of collective grief and collective celebration of life. The exhibition can be viewed online through March 31, 2021.
“The Virtual Quilt Exhibition makes accessible an important telling of the stories that make up the lives of people who were impacted by AIDS,” said Mayor Horvath. “The Exhibition not only helps us to know and remember their stories, but also helps to educate future generations.”
FORUM EXPLORES COVID-19 & AIDS
On World AIDS Day, the National AIDS Memorial presented a national online conversation about a new pandemic, COVID-19, which overshadowed the usual discussion on World AIDS Day about HIV and AIDS.
Hosted by Judith Light, the speakers included New York City Mayor Bill de Blasio, Chicago Mayor Lori Lightfoot, Long Beach Mayor Robert Garcia, Black Lives Matter Co-Founder Alicia Garza, AIDS Memorial Quilt Founder Cleve Jones, Human Rights Campaign President Alphonso David, Dr. David Ho, and Dr. Anthony Fauci. FAM was proud to be a Community Sponsor of the forum.
Although online communication is not new to the national conversation that happens every World AIDS Day, this year’s topics for discussion were quite different.
While discussions in previous years were focused primarily on memorializing those lost, battling stigma, as well as sharing news of new HIV developments, breakthroughs, treatments and prevention, this year’s forum focused largely on the appalling loss and government response to Covid-19: its impact on marginalized communities, activism and how it sparks change and movements, and medical and scientific advancements.
Not only did top HIV experts discuss the virus’s impact on those with HIV, but they also shared lessons learned from HIV that are applicable to the current pandemic. It was apparent to attendees that in order to develop a COVID-19 vaccine “at warp speed,” our nation turned to the many doctors, scientists and researchers who spent much of their careers seeking cures and life-saving treatment for HIV and AIDS.
Please watch this inspiring 3-hour forum with leading voices from both the AIDS and the COVID-19 pandemics.
