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.
AIDS Monument Newsletter – 2021 Q2
May 4, 2021
Remember. Celebrate. Educate.
Message from the Board Chair
On Thursday, April 29, 2021, FAM hosted an update on Zoom with dozens of our donors, from $500 to $500,000. We showed the progress we are making with the physical Monument, reviewed the design of the physical Monument, and shared our on-going work on the digital Monument of audio stories, interviews and other programming.
Sharon Stone reminded us that the Monument “will last beyond our lifetimes and leave a mark so that … people we have lost and loved will be remembered, and we will be remembered for the struggle and strife, and … this world we have changed.”
As Sharon says: “Let’s do our very best to leave this AIDS memorial for those who come after us – they will know the friendship, the camaraderie, the dignity and love we have all shared and the family we have become during this terrible crisis.”
If you would like to view the event, which lasts just under 34 minutes and includes two emotional stories from FAM’s HEAR our STORIES audio recordings project, please click on the link below.
Feel free to share this update with your friends, employers and colleagues who might want to learn about STORIES: The AIDS Monument and to support us with a donation.
Warmest regards,
Irwin M. Rappaport
UPCOMING EVENTS
This Saturday!
The Normal Heart virtual event
It’s the hottest virtual event this weekend — a celebrity reading of Larry Kramer’s The Normal Heart — and your ticket purchase can support STORIES: The AIDS Monument.
FAM is proud to be a Community Partner for ONE Archives’ star-studded virtual reading of The Normal Heart on Saturday, May 8 at 5:00 p.m. (Pacific).
Please join us for this one-time streaming live performance, followed by a Q+A with the Director Paris Barclay and all-star diverse cast.
This will be the first time the Tony Award-winning play features a predominately BIPOC (Black/ Indigenous/People of Color) and LGBTQ cast.
“Through today’s lens, the story of a marginalized people pushed to activism by the onslaught of an epidemic clearly was worth telling again. We’ve assembled an extraordinary cast that makes this particular reading even more timely. And we hope, more powerful,” Barclay said.
Cast members include Sterling K. Brown (This Is Us, Black Panther); Laverne Cox (Orange Is The New Black, Promising Young Woman); Jeremy Pope (Hollywood, Choir Boy); Vincent Rodriguez III (Crazy Ex-Girlfriend, Insatiable): Guillermo Díaz (Scandal, Weeds); Jake Borelli (Grey’s Anatomy, The Thing About Harry); Ryan O’Connell (Special, Will & Grace); Daniel Newman (Walking Dead, Homeland); Jay Hayden (The Catch, The House Bunny); and Danielle Savre (Station 19, Heroes).
IMPORTANT: When you purchase your ticket, please use the code ONEFAM so that proceeds will help support STORIES: The AIDS Monument.
Once you have purchased your ticket, you will receive a reminder email the day of the event.
If you have any issues logging on to the event platform, please text Jennifer at 202-340-0179.
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Hamilton at the Pantages Theatre
Hamilton, winner of eleven Tony Awards, is returning to the Pantages Theatre this fall, and FAM invites you to join us at a show-and-reception event on the evening of Friday, November 19, 2021.
What better way to get back to theatre-going and support The AIDS Monument with your ticket purchase for this must-see theater event?
This evening-to-remember will include a pre-show reception at the W Hollywood at 7:00 p.m. followed by the 8:00 p.m. show across the street at the historic Pantages.
FAM has secured premium seating for the performance, and you can select from VIP or Premium VIP choices.
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Other Ways to Support STORIES: The AIDS Monument …
… and be the first to find out about our special events:
- Like our Facebook page! https://www.facebook.com/TheAIDSMonument
- Follow us on Twitter (@TheAIDSMonument) and Instagram (theaidsmonument)
Get Your Personally Autographed Copy
Make a donation to FAM in the amount of $500 or more before May 15, and you’ll receive an autographed hard-cover copy, addressed personally to you, of Sharon Stone’s new best-seller The Beauty of Living Twice.
Click here to make your contribution through the secure donation page on FAM’s website.
Park Area Prepared for AIDS Monument
Construction Update: The contractor hired by the City of West Hollywood to oversee the extensive renovation of West Hollywood Park has begun grading and preparing the site for The AIDS Monument.
STORIES from Artists: Tim Murphy
With every newsletter, FAM will shine a light on an artist who is grappling with HIV/AIDS in their work. We’ll be asking the same questions, and getting very different answers. For the first interview in our STORIES From Artists series, we’re featuring the author and journalist Tim Murphy.
Among other achievements, Murphy is the author of the novel Christodora, which profoundly moved us. Published by Grove Press in 2016 and longlisted for the Andrew Carnegie Medal, Christodora tells the story of a diverse cast of characters – including an AIDS activist – whose lives collide in an iconic building in Manhattan. Murphy has also reported on HIV/AIDS for 20 years for such publications as POZ Magazine, where he was an editor and staff writer.
– Abdi Nazemian
Board Member, Foundation for the AIDS Monument
– When is the first time you heard about HIV/AIDS?
My first AIDS memory is browsing the magazines in the CVS in my hometown in Massachusetts and seeing a story that I think was in Newsweek or Time — this was probably 1982 or 1983, so I would’ve been 12 or 13 — about AIDS, and the story had a picture of an AIDS awareness or safe sex poster hanging in a gay bathhouse, which was a double peek for me: of not just AIDS, but of gay life and gay sexual spaces.
And then my next memory is of Rock Hudson on the cover of People magazine in October 1985 after he died. I remember going to the adjacent small city on the regional transit bus to buy black oxford shoes at the Army-Navy store and seeing the magazine cover on the way there. But this was a long way away from when I would actually acknowledge that I was gay myself and come out, which was not until the early 90s, at the end of college.
– Why did you choose to grapple with HIV/AIDS in your work?
I have written about AIDS in NYC since about 1994, when I became a volunteer writer for GMHC’s various magazines, back when they probably had 1,000 volunteers at any given time. And after writing about HIV treatment for about 7 years, I became HIV+ myself in 2000, in a very messy period of depression and drugs.
So, HIV/AIDS has been part of my personal, social and professional story my entire adult life in NYC, and eventually it all found its way into Christodora. At that time, there were basically no fictional narratives that took on the whole arc of AIDS in NYC, from 1981 until well into the cocktail era, and I wanted to try to do that, but jumping back and forth in time.
– In what ways have the arts adequately — or inadequately — honored the legacy of those we lost and those who fought?
AIDS as depicted in film, TV and lit has usually been the stories of gay white men, even as recently as “It’s a Sin” on HBO, and we have not really had good storytelling depicting AIDS in Black communities, among drug users, and among women.
Maybe someone will option Sarah Schulman’s forthcoming “Let the Record Show,” which is the first forthcoming history of ACT UP-NY from all those perspectives, not just gay white male ones. The story of the activism that was done in those realms, such as legalizing needle exchange in NYC or making the federal government broaden the definition of AIDS to include women’s symptoms, is really fascinating — great stories we haven’t heard before. I hope we see more of them well depicted in TV and film especially. TV in recent years really has become an incredible medium for telling these never-before-told stories.
– What scared you most about telling this story?
I think being so graphic about sex and out-of-control drug use, which was definitely part of my story. I thought people would recoil from those aspects, but in fact they seem to have had a car-accident, can’t-look-away quality for most readers. I was also scared about telling AIDS stories not from my “native” community middle-class gay mostly (but far from all) white men, such as women’s stories. I approached that part with a lot of thoughtfulness and extreme respect around historical and medical accuracy.
– What is your favorite work of art that deals with HIV/AIDS?
I love a short story by a writer who died of AIDS in the 90s named Allen Barnett, called “The Times As it Knows Us,” in a collection called The Body and Its Dangers and Other Stories. It’s an incredibly beautiful piece of writing that was hugely influential for me when I read it in my 20s in the ’90s. I also think that the TV show Pose deals with AIDS really beautifully, as did the TV show The Deuce. And I love Janet Jackson’s “Together Again,” which is her valentine song to her friends who died of AIDS.
– What do you think the role of art is during a public health crisis?
I think art, seeing the stories we are living, or have lived, helps us process things emotionally that we otherwise might not be able to process, because it reflects them back to us in a way that’s concentrated and distilled, versus the slow drip of real life, which can just be slowly traumatic.
– If you could help shine a light on one life we lost to HIV/AIDS, who would it be?
The designer Willi Smith, who died of AIDS in 1987. I wore WilliWear in high school, so I have a sentimental attachment, but whenever I look at old pictures of him and his models in his clothes in NYC in the 1980s, I just feel happy and thrilled and wish I could watch the story of his short life in a limited series or something.
I feel the same way about the fashion illustrator Antonio Lopez, who also died of AIDS in 1987. Maybe a dual bio of both of them? I imagine they crossed paths, working in the same city in the same field at the exact same time.
Remembering Ivy Bottini: 1926-2021
By West Hollywood Councilmember John Erickson
West Hollywood lost a hero when Ivy Bottini passed away on February 25, 2021. Ivy’s life was the very definition of activism. After moving to Los Angeles in 1971, Ivy jumped into the gay and lesbian rights movement, where she co-founded the Coalition for Human Rights, AIDS Network LA, and AIDS Project Los Angeles (now APLA Health).
Her prominence in defending and advancing LGBTQ rights was first seen when she served as the Southern California deputy director of No on 6, the campaign created to defeat the Briggs Initiative. The Briggs Initiative (Proposition 6) was a referendum on the California state ballot in the 1978 election that was sponsored by John Briggs, a conservative politican from Orange County. The failed initiative sought to ban gays and lesbians from working in California’s public schools.
In 1986, following the success of No on 6, Ivy chaired the No on the LaRouche Initiative (Proposition 64) campaign. Activists associated with conspiracy theorist Lyndon LaRouche formed the “Prevent AIDS Now Initiative Committee” (PANIC) to place Proposition 64 on the 1986 state ballot. Prop. 64 would have added AIDS to the list of communicable diseases, a step toward the LaRouche camp’s goal of quarantining HIV-positive people. The measure was defeated by a margin of 71% to 29%.
Ivy also served on the City’s Lesbian and Gay Advisory Board (LGAB) and it was here where she first advanced the idea of a monument to memorialize the lives lost to AIDS and to commemorate the people dedicated to the care of people living with HIV/AIDS. At that time, other members of the community with a similar idea got together with Ivy and her dear friend Ruth Tittle, and that group laid the groundwork for what would become the Foundation for the AIDS Monument.
Bottini’s life and activism had a significant impact on so many individuals, whether they knew it or not. Like so many people, I met Ivy when I first moved to the City of West Hollywood. Ivy’s presence was unmatched at any city meeting or event and like the proverbial godfather, if you wanted to be a community activist, you needed to first get her blessing.
Ivy loved working with people and helping them realize and hone their passions. This was my story, like so many individuals before me, with her. As a male feminist and a member of the National Organization for Women (NOW), I had heard and known of Ivy’s impact and work. From designing the logo that NOW still uses to this day to the expulsion from the NOW’s leadership by then President Betty Friedan because Ivy started a public dialog about lesbians in the feminist movement (“the lesbian menace”), Ivy was an icon in every sense of the word.
However, to me, Ivy was always just the friend and mentor that I could call with any problem or issue I had. While I’d like to think of my experience as unique, it is no surprise that Ivy played this role for so many and, as a result, she changed countless lives and communities for the better.
Ivy’s death at the age of 94 reminds us all that no matter what age you are, you can have an impact and make a difference for so many individuals. The life and times of Ivy Bottini prove that one woman can change the world and, even in the process, inspire a young gay man from Ripon, Wisconsin to run (and win) a seat on the West Hollywood City Council.
Because of Ivy, so many of us remained safe and alive in our communities when our governments and families turned on us. Because of Ivy, we found that home may not be where we were born or raised but in a place called West Hollywood.
John Erickson is a City of West Hollywood Councilmember and a Council Liaison to the Foundation for the AIDS Monument.
Four decades of HIV Research Allows
Faster Response to COVID Pandemic
By W. David Hardy, M.D.
Ever wonder how and why we had diagnostic tests to accurately confirm COVID-19 cases only two to three weeks after discovery of the SARS-CoV-2, the virus that causes it? How were treatments like remdesivir or the “antibody cocktails” developed for treatment of this new disease in a few months rather than the usual 10 to 15 years? How could over 200 new vaccines to protect persons from COVID-19 proceed to human testing within a few weeks after discovery of the new disease, with 6 now available for global use?
In large part, all of these tremendously rapid, effective and safe health advances were only made possible due to the many scientific advances made by our four decades of HIV research.
We now take for granted the highly accurate, specific and rapid laboratory technique called PCR (polymerase chain reaction) which underpins our most useful HIV blood test called the “viral load test.”
In 1996, this test allowed HIV researchers to see “below the surface” and finally understand that untreated HIV infection is never dormant, but instead continuously and ferociously active and destructive. PCR technology was rapidly applied to detecting and measuring the amount of SARS-CoV-2 in an infected person’s saliva.
This happened within days of the virus’ discovery and was fashioned into multiple, highly accurate diagnostic tests with a few weeks. Thanks to this lightning-fast development, our ability to diagnose persons with COVID-19, confirm the virus’ transmission patterns and trace personal contacts of possibly infected persons became almost instantly possible.
PCR is also used to determine the effectiveness of new therapies for COVID-19. Without this tool, literally millions of more persons would have become infected and succumbed to this disease. The fact that PCR was already used to diagnose and treat HIV and many other viruses, streamlined its use for COVID-19.
The therapeutic technologies designed to treat HIV (e.g., Truvada© and Descovy©, used to both treat and prevent HIV) were quickly leveraged to exploit basic vulnerabilities shared by HIV and SARS-CoV-2.
This transfer of technology led to development and FDA approval of the first antiviral medication, remdesivir, for COVID-19. When used early in the course of COVID-19, it helps affected persons to recover faster and leave the hospital earlier than persons who received a placebo treatment.
The almost magical monoclonal “antibody cocktails” quickly lower the SARS-CoV-2 viral load in an infected person’s body and kept them from progressing to the point where hospital care was needed. These antibodies have also been highly effective in protecting high-risk residents of nursing homes from the viral infection when given to them after exposure to the virus.
This therapeutic technology was first discovered and developed as treatment for and protection against HIV over 15 years ago. The years of knowledge and clinical experience gained from studies of these anti-HIV antibodies allowed design and production of similar “antibody cocktails” for COVID-19 in a matter of weeks.
Finally, almost everyone in our world has been awed at how fast multiple preventive vaccines have been designed, developed and now used to protect persons from COVID-19. A developmental timeline which historically took 10 or more years was necessarily and successfully compressed into a few months.
While we still lack an effective vaccine to protect persons from HIV, it is not for lack of trying. Ever since HIV was discovered in 1983, scientists have conducted thousands of laboratory experiments, hundreds of animal studies and clinical trials testing possible vaccine strategies.
The laboratory technology, results from animal and human safety and effectiveness studies, developed over almost four decades of HIV vaccine research, paved a clear and relatively simple pathway for developing safe and effective COVIC-19 vaccines.
Here again, years of HIV vaccine research directly fostered COVID-19 vaccines.
In a related manner, the federally funded, highly experienced clinical trial networks originally created to test HIV treatment and prevention strategies were re-purposed almost overnight to recruit, enroll and evaluate thousands of volunteers for many COVID-19 clinical trials.
Without these well-oiled and highly effective networks of experienced clinical researchers, the unprecedented, rapid and high-quality clinical trials of COVID-19 vaccines could not have been accomplished in such record time.
All-in-all, as inadequate and delayed as the United States’ overall public health response to the COVID-19 pandemic was, the pre-existing, extraordinarily high level of technology, research advances and clinical trial expertise derived from our response to the HIV global pandemic allowed our scientific and medical response to the COVID-19 pandemic to flourish and produce life-saving results in record time.
Without the multitude of “lessons learned” over the last 40+ years from responding to HIV, the death and destruction due to SARS-CoV-2 would have been much greater and even more tragic. Thus, we see how our response to the HIV pandemic has changed and improved our world today.
Dr. W. David Hardy is a Board Member of the Foundation for The AIDS Monument. He has worked as an HIV Researcher since 1984 and as a COVID-19 Researcher since 2020.
SPOTLIGHT:
Ruth Tittle, Loyd Tittle & Capitol Drugs
By Irwin M. Rappaport
Ruth Tittle was a founding Board member for the Foundation for the AIDS Monument, and served as Board Secretary for many years. She also served for many years as a board member and officer of the West Hollywood Chamber of Commerce.
In 2017, Ruth received a Rainbow Key Award from the City of West Hollywood. The award was given in recognition of her 16 years of services to the Lesbian and Gay Advisory Board, her work in support of Gay and Lesbian Elder Housing, her service as a board member of the Foundation for The AIDS Monument, her work with her late brother Loyd Tittle as pioneers in affordable prescription services at their pharmacy Capitol Drugs, and for bringing much-needed attention to addiction, mental health, lesbian visibility, preservation of LGBT history, women’s health, and many other aspects and aspirations of the Gay and Lesbian community.
Capitol Drugs Opens
Ruth’s late brother Loyd came to Los Angeles in 1978. In 1986, Loyd purchased a pharmacy called Capitol Drugs, in Sherman Oaks. It was a homeopathic pharmacy. Among other things, Loyd helped customers with supplements that would aid them in recovery from drug and alcohol addiction, based on his own experience as a recovering alcoholic.
In 1990, Loyd opened the West Hollywood location of Capitol Drugs at 8578 Santa Monica Boulevard near the 24 Hour Fitness gym and across the street from the Ramada Plaza hotel. The business expanded in 1991 to include the Power Zone next door to the pharmacy, offering supplements and a juice bar with smoothies and protein shakes.
Holistic and Personal Approach
Much of the success of Capitol Drugs and Power Zone was due to the way Loyd (and, later on, Ruth) and their staff (including VPs Robert Frydrych and Bruce Senesac) cared for their customers.
Ruth explains: “We knew their spouses, their doctors — each customer was treated like someone you knew and cared about. We took a holistic approach, caring for the whole person.”
By the early 1990s, AIDS was the leading cause of death among Americans ages 25 to 44 and had hit Los Angeles particularly hard. AZT was a single-drug treatment which wasn’t effective when the virus began to mutate, and many people couldn’t tolerate the side effects such as extreme nausea. Often, people stopped taking it because it left them no quality of life.
Organizations such as Being Alive and AIDS Project Los Angeles (APLA) worked with Capitol Drugs to get the latest information to their customers about experimental treatments. They organized lectures in Power Zone and Capitol Drugs where doctors would talk about the latest experimental treatment options. People would try anything they’d heard might work. They would try garlic enemas, which made the pharmacy smell like an Italian restaurant. Loyd and Ruth grew kombucha mushrooms in a refrigerator and offered Chinese herbs.
Customers would come into the pharmacy and looked like they might not live more than a few days. This was the case with John Duran three different times, according to Ruth, but fortunately he pulled through! Ten friends from Chicago including Loyd moved to Los Angeles together but only 3-4 survived.
In the early ’90s, Ruth and Loyd would go to four or five memorials a week. Ruth estimates that she lost over 400 friends, customers and employees to AIDS.
Caring for Loyd
Loyd was diagnosed with AIDS in 1988. For four years, Ruth frequently traveled from Lexington, Kentucky to Los Angeles to help care for Loyd, using accrued sick time and paid leave from her government job as a civil engineer.
In 1992, Ruth moved full-time to West Hollywood to care for Loyd and to help him with the businesses. Loyd suffered from cytomegalovirus (CMV) colitis, and as a result he couldn’t absorb nutrition. As with many people with AIDS, this condition led to loss of body mass, commonly known as “wasting.”
Loyd was in the hospital 11 times in his last year. Dealing with insurance companies was a difficult challenge. People didn’t want to lose health insurance coverage, or not be able to get coverage, if the insurer found out he or she had HIV/AIDS.
Ruth wanted Loyd’s insurer to approve paying for a home health care worker, but the insurer denied the request. She learned how to fight with the insurance companies as part of caring for Loyd. With advice from APLA, Ruth finally convinced the insurer to cover home health care because it was much cheaper than the cost of a hospital stay.
As Loyd lay close to death in his apartment, one of his close friends, Steven Bair, came to say goodbye. Steven kneeled down and whispered into Loyd’s ear, “I’ll see you soon.”
Steven died a year later. The last words Loyd said to his sister were: “Ruth take care of the stores, and I love you.”
Loyd died March 6, 1993, at 42 years old.
“One of the things my brother said is that ‘I don’t want people to forget me.’ And that breaks your heart to hear somebody say that.”
A plaque remembering Loyd is on the sidewalk in front of Capitol Drugs, part of the AIDS Memorial Walk. To deal with the grief from the death of her brother and soulmate, Ruth joined the LA Physicians on AIDS Forum and jumped into work running the pharmacies. She created and promoted the West Hollywood Health Fair (held in March and October of each year, except for the current hiatus due to the COVID-19 pandemic).
The Health Fair is an opportunity for local health-conscious businesses to work together and for residents to get healthy and support such businesses. The most recent Health Fair featured more than 70 vendors and attracted more than 2,000 attendees. Later, Ruth became one of the founding members of the Board of the Foundation for The AIDS Monument.
Fear and Discrimination
Drug cocktails (protease inhibitors) finally became available in 1995, and they were a life-saver, a complete game-changer in the treatment of people with AIDS. But in the beginning, Ruth recalls, there was one mail-order company shipping out the medication for the whole country, and the pharmacy had to send them patient information.
Patients were afraid of losing their jobs or housing if their employer or landlord found out they had AIDS. The company promised that it would send out the medication in a plain brown package directly to the patient, but that didn’t happen — it was marked as being from a pharmacy. It would arrive at workplaces and get left in hallways. The controversy and concern led to a push for patient privacy which ultimately helped bring about the federal law, HIPPA.
The Origins of the AIDS Monument Project
In 2011, Ruth had been on LGAB (Lesbian & Gay Advisory Board, City of West Hollywood) for 12 years, along with Ivy Bottini who had then served on the advisory board for 11 years. Each year, LGAB would pick its top three issues they wanted to work on, but for a number of years, the idea of an AIDS monument didn’t make it into LGAB’s top three.
Ruth wanted to keep pushing the City of West Hollywood to do a monument. Ruth recalls people saying “We don’t have a cure yet. You’re wanting to build a memorial, but we still need to help people.”
And Ruth thought, “If we don’t do it now, look how long it’s been since all these people died. How long do they have to wait before something is done in remembrance of them?”
“So many times,” Ruth recalls sprinkling ashes “off the coast, because they had nowhere to go, they needed cremation to be paid for, they had … no one to call, no family to come to them … Those are the unspoken, un-memorialized, unmarked graves, unrecognized, that we need to honor, for them.”
So, she and Ivy went in to speak to West Hollywood City Councilmember John Duran, who had appointed Ruth to LGAB. Duran said that the City didn’t have the money at the time to build a monument, but Duran mentioned that there were some guys in the community [Craig Dougherty, Jason Kennedy, Conor Gaughan and Hank Stratton] who had been talking about trying to raise money for an AIDS memorial, so he introduced the two women to the three men. [Craig Dougherty wrote a position paper proposing an AIDS monument in 2010, and met with Duran that year].
Ruth, Ivy and some of the guys met at West Hollywood City Hall. Ivy started working on another project, but Ruth kept working with Craig, Jason, Hank and Conor.
Ruth had worked with Mark Lehman on the Gay and Lesbian Elder Housing project, so she contacted Mark and asked if he was interested in working on the AIDS memorial (now called the AIDS monument) project. Mark jumped at the idea, and a group of them met at Joey’s Café and hit it off. After that, the Board was formed and started to grow.
At a health fair at the Grove where Ruth volunteered a number of years ago, she spoke with a man who said his brother died of AIDS. The man didn’t know his brother was sick and he wished he had done something to help his brother.
Ruth told him: “We are building a place where you’ll be able to go anytime you want, and you’ll be able to talk to your brother.”
He said,” I’ll keep watching and when that happens, I’ll be there.”
Ruth sold Capitol Drugs and Power Zone in 2016, thirty years after Loyd opened the first pharmacy location. She currently resides once again in Lexington, KY, near her daughter and grandchildren.
At 70 years old, Ruth hasn’t slowed down. She and her youngest granddaughter already have plans to go to the Dominican Republic to swim with humpback whales during migration season in the spring of 2022.
Reach out to us on email at admin@aidsmonument.org
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.
Remember. Celebrate. Educate.
Message from the Board Chair
On Thursday, April 29, 2021, FAM hosted an update on Zoom with dozens of our donors, from $500 to $500,000. We showed the progress we are making with the physical Monument, reviewed the design of the physical Monument, and shared our on-going work on the digital Monument of audio stories, interviews and other programming.
Sharon Stone reminded us that the Monument “will last beyond our lifetimes and leave a mark so that … people we have lost and loved will be remembered, and we will be remembered for the struggle and strife, and … this world we have changed.”
As Sharon says: “Let’s do our very best to leave this AIDS memorial for those who come after us – they will know the friendship, the camaraderie, the dignity and love we have all shared and the family we have become during this terrible crisis.”
If you would like to view the event, which lasts just under 34 minutes and includes two emotional stories from FAM’s HEAR our STORIES audio recordings project, please click on the link below.
Feel free to share this update with your friends, employers and colleagues who might want to learn about STORIES: The AIDS Monument and to support us with a donation.
Warmest regards,
Irwin M. Rappaport
UPCOMING EVENTS
This Saturday!
The Normal Heart virtual event
It’s the hottest virtual event this weekend — a celebrity reading of Larry Kramer’s The Normal Heart — and your ticket purchase can support STORIES: The AIDS Monument.
FAM is proud to be a Community Partner for ONE Archives’ star-studded virtual reading of The Normal Heart on Saturday, May 8 at 5:00 p.m. (Pacific).
Please join us for this one-time streaming live performance, followed by a Q+A with the Director Paris Barclay and all-star diverse cast.
This will be the first time the Tony Award-winning play features a predominately BIPOC (Black/ Indigenous/People of Color) and LGBTQ cast.
“Through today’s lens, the story of a marginalized people pushed to activism by the onslaught of an epidemic clearly was worth telling again. We’ve assembled an extraordinary cast that makes this particular reading even more timely. And we hope, more powerful,” Barclay said.
Cast members include Sterling K. Brown (This Is Us, Black Panther); Laverne Cox (Orange Is The New Black, Promising Young Woman); Jeremy Pope (Hollywood, Choir Boy); Vincent Rodriguez III (Crazy Ex-Girlfriend, Insatiable): Guillermo Díaz (Scandal, Weeds); Jake Borelli (Grey’s Anatomy, The Thing About Harry); Ryan O’Connell (Special, Will & Grace); Daniel Newman (Walking Dead, Homeland); Jay Hayden (The Catch, The House Bunny); and Danielle Savre (Station 19, Heroes).
IMPORTANT: When you purchase your ticket, please use the code ONEFAM so that proceeds will help support STORIES: The AIDS Monument.
Once you have purchased your ticket, you will receive a reminder email the day of the event.
If you have any issues logging on to the event platform, please text Jennifer at 202-340-0179.
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Hamilton at the Pantages Theatre
Hamilton, winner of eleven Tony Awards, is returning to the Pantages Theatre this fall, and FAM invites you to join us at a show-and-reception event on the evening of Friday, November 19, 2021.
What better way to get back to theatre-going and support The AIDS Monument with your ticket purchase for this must-see theater event?
This evening-to-remember will include a pre-show reception at the W Hollywood at 7:00 p.m. followed by the 8:00 p.m. show across the street at the historic Pantages.
FAM has secured premium seating for the performance, and you can select from VIP or Premium VIP choices.
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Other Ways to Support STORIES: The AIDS Monument …
… and be the first to find out about our special events:
- Like our Facebook page! https://www.facebook.com/TheAIDSMonument
- Follow us on Twitter (@TheAIDSMonument) and Instagram (theaidsmonument)
Get Your Personally Autographed Copy
Make a donation to FAM in the amount of $500 or more before May 15, and you’ll receive an autographed hard-cover copy, addressed personally to you, of Sharon Stone’s new best-seller The Beauty of Living Twice.
Click here to make your contribution through the secure donation page on FAM’s website.
Park Area Prepared for AIDS Monument
Construction Update: The contractor hired by the City of West Hollywood to oversee the extensive renovation of West Hollywood Park has begun grading and preparing the site for The AIDS Monument.
STORIES from Artists: Tim Murphy
With every newsletter, FAM will shine a light on an artist who is grappling with HIV/AIDS in their work. We’ll be asking the same questions, and getting very different answers. For the first interview in our STORIES From Artists series, we’re featuring the author and journalist Tim Murphy.
Among other achievements, Murphy is the author of the novel Christodora, which profoundly moved us. Published by Grove Press in 2016 and longlisted for the Andrew Carnegie Medal, Christodora tells the story of a diverse cast of characters – including an AIDS activist – whose lives collide in an iconic building in Manhattan. Murphy has also reported on HIV/AIDS for 20 years for such publications as POZ Magazine, where he was an editor and staff writer.
– Abdi Nazemian
Board Member, Foundation for the AIDS Monument
– When is the first time you heard about HIV/AIDS?
My first AIDS memory is browsing the magazines in the CVS in my hometown in Massachusetts and seeing a story that I think was in Newsweek or Time — this was probably 1982 or 1983, so I would’ve been 12 or 13 — about AIDS, and the story had a picture of an AIDS awareness or safe sex poster hanging in a gay bathhouse, which was a double peek for me: of not just AIDS, but of gay life and gay sexual spaces.
And then my next memory is of Rock Hudson on the cover of People magazine in October 1985 after he died. I remember going to the adjacent small city on the regional transit bus to buy black oxford shoes at the Army-Navy store and seeing the magazine cover on the way there. But this was a long way away from when I would actually acknowledge that I was gay myself and come out, which was not until the early 90s, at the end of college.
– Why did you choose to grapple with HIV/AIDS in your work?
I have written about AIDS in NYC since about 1994, when I became a volunteer writer for GMHC’s various magazines, back when they probably had 1,000 volunteers at any given time. And after writing about HIV treatment for about 7 years, I became HIV+ myself in 2000, in a very messy period of depression and drugs.
So, HIV/AIDS has been part of my personal, social and professional story my entire adult life in NYC, and eventually it all found its way into Christodora. At that time, there were basically no fictional narratives that took on the whole arc of AIDS in NYC, from 1981 until well into the cocktail era, and I wanted to try to do that, but jumping back and forth in time.
– In what ways have the arts adequately — or inadequately — honored the legacy of those we lost and those who fought?
AIDS as depicted in film, TV and lit has usually been the stories of gay white men, even as recently as “It’s a Sin” on HBO, and we have not really had good storytelling depicting AIDS in Black communities, among drug users, and among women.
Maybe someone will option Sarah Schulman’s forthcoming “Let the Record Show,” which is the first forthcoming history of ACT UP-NY from all those perspectives, not just gay white male ones. The story of the activism that was done in those realms, such as legalizing needle exchange in NYC or making the federal government broaden the definition of AIDS to include women’s symptoms, is really fascinating — great stories we haven’t heard before. I hope we see more of them well depicted in TV and film especially. TV in recent years really has become an incredible medium for telling these never-before-told stories.
– What scared you most about telling this story?
I think being so graphic about sex and out-of-control drug use, which was definitely part of my story. I thought people would recoil from those aspects, but in fact they seem to have had a car-accident, can’t-look-away quality for most readers. I was also scared about telling AIDS stories not from my “native” community middle-class gay mostly (but far from all) white men, such as women’s stories. I approached that part with a lot of thoughtfulness and extreme respect around historical and medical accuracy.
– What is your favorite work of art that deals with HIV/AIDS?
I love a short story by a writer who died of AIDS in the 90s named Allen Barnett, called “The Times As it Knows Us,” in a collection called The Body and Its Dangers and Other Stories. It’s an incredibly beautiful piece of writing that was hugely influential for me when I read it in my 20s in the ’90s. I also think that the TV show Pose deals with AIDS really beautifully, as did the TV show The Deuce. And I love Janet Jackson’s “Together Again,” which is her valentine song to her friends who died of AIDS.
– What do you think the role of art is during a public health crisis?
I think art, seeing the stories we are living, or have lived, helps us process things emotionally that we otherwise might not be able to process, because it reflects them back to us in a way that’s concentrated and distilled, versus the slow drip of real life, which can just be slowly traumatic.
– If you could help shine a light on one life we lost to HIV/AIDS, who would it be?
The designer Willi Smith, who died of AIDS in 1987. I wore WilliWear in high school, so I have a sentimental attachment, but whenever I look at old pictures of him and his models in his clothes in NYC in the 1980s, I just feel happy and thrilled and wish I could watch the story of his short life in a limited series or something.
I feel the same way about the fashion illustrator Antonio Lopez, who also died of AIDS in 1987. Maybe a dual bio of both of them? I imagine they crossed paths, working in the same city in the same field at the exact same time.
Remembering Ivy Bottini: 1926-2021
By West Hollywood Councilmember John Erickson
West Hollywood lost a hero when Ivy Bottini passed away on February 25, 2021. Ivy’s life was the very definition of activism. After moving to Los Angeles in 1971, Ivy jumped into the gay and lesbian rights movement, where she co-founded the Coalition for Human Rights, AIDS Network LA, and AIDS Project Los Angeles (now APLA Health).
Her prominence in defending and advancing LGBTQ rights was first seen when she served as the Southern California deputy director of No on 6, the campaign created to defeat the Briggs Initiative. The Briggs Initiative (Proposition 6) was a referendum on the California state ballot in the 1978 election that was sponsored by John Briggs, a conservative politican from Orange County. The failed initiative sought to ban gays and lesbians from working in California’s public schools.
In 1986, following the success of No on 6, Ivy chaired the No on the LaRouche Initiative (Proposition 64) campaign. Activists associated with conspiracy theorist Lyndon LaRouche formed the “Prevent AIDS Now Initiative Committee” (PANIC) to place Proposition 64 on the 1986 state ballot. Prop. 64 would have added AIDS to the list of communicable diseases, a step toward the LaRouche camp’s goal of quarantining HIV-positive people. The measure was defeated by a margin of 71% to 29%.
Ivy also served on the City’s Lesbian and Gay Advisory Board (LGAB) and it was here where she first advanced the idea of a monument to memorialize the lives lost to AIDS and to commemorate the people dedicated to the care of people living with HIV/AIDS. At that time, other members of the community with a similar idea got together with Ivy and her dear friend Ruth Tittle, and that group laid the groundwork for what would become the Foundation for the AIDS Monument.
Bottini’s life and activism had a significant impact on so many individuals, whether they knew it or not. Like so many people, I met Ivy when I first moved to the City of West Hollywood. Ivy’s presence was unmatched at any city meeting or event and like the proverbial godfather, if you wanted to be a community activist, you needed to first get her blessing.
Ivy loved working with people and helping them realize and hone their passions. This was my story, like so many individuals before me, with her. As a male feminist and a member of the National Organization for Women (NOW), I had heard and known of Ivy’s impact and work. From designing the logo that NOW still uses to this day to the expulsion from the NOW’s leadership by then President Betty Friedan because Ivy started a public dialog about lesbians in the feminist movement (“the lesbian menace”), Ivy was an icon in every sense of the word.
However, to me, Ivy was always just the friend and mentor that I could call with any problem or issue I had. While I’d like to think of my experience as unique, it is no surprise that Ivy played this role for so many and, as a result, she changed countless lives and communities for the better.
Ivy’s death at the age of 94 reminds us all that no matter what age you are, you can have an impact and make a difference for so many individuals. The life and times of Ivy Bottini prove that one woman can change the world and, even in the process, inspire a young gay man from Ripon, Wisconsin to run (and win) a seat on the West Hollywood City Council.
Because of Ivy, so many of us remained safe and alive in our communities when our governments and families turned on us. Because of Ivy, we found that home may not be where we were born or raised but in a place called West Hollywood.
John Erickson is a City of West Hollywood Councilmember and a Council Liaison to the Foundation for the AIDS Monument.
Four decades of HIV Research Allows
Faster Response to COVID Pandemic
By W. David Hardy, M.D.
Ever wonder how and why we had diagnostic tests to accurately confirm COVID-19 cases only two to three weeks after discovery of the SARS-CoV-2, the virus that causes it? How were treatments like remdesivir or the “antibody cocktails” developed for treatment of this new disease in a few months rather than the usual 10 to 15 years? How could over 200 new vaccines to protect persons from COVID-19 proceed to human testing within a few weeks after discovery of the new disease, with 6 now available for global use?
In large part, all of these tremendously rapid, effective and safe health advances were only made possible due to the many scientific advances made by our four decades of HIV research.
We now take for granted the highly accurate, specific and rapid laboratory technique called PCR (polymerase chain reaction) which underpins our most useful HIV blood test called the “viral load test.”
In 1996, this test allowed HIV researchers to see “below the surface” and finally understand that untreated HIV infection is never dormant, but instead continuously and ferociously active and destructive. PCR technology was rapidly applied to detecting and measuring the amount of SARS-CoV-2 in an infected person’s saliva.
This happened within days of the virus’ discovery and was fashioned into multiple, highly accurate diagnostic tests with a few weeks. Thanks to this lightning-fast development, our ability to diagnose persons with COVID-19, confirm the virus’ transmission patterns and trace personal contacts of possibly infected persons became almost instantly possible.
PCR is also used to determine the effectiveness of new therapies for COVID-19. Without this tool, literally millions of more persons would have become infected and succumbed to this disease. The fact that PCR was already used to diagnose and treat HIV and many other viruses, streamlined its use for COVID-19.
The therapeutic technologies designed to treat HIV (e.g., Truvada© and Descovy©, used to both treat and prevent HIV) were quickly leveraged to exploit basic vulnerabilities shared by HIV and SARS-CoV-2.
This transfer of technology led to development and FDA approval of the first antiviral medication, remdesivir, for COVID-19. When used early in the course of COVID-19, it helps affected persons to recover faster and leave the hospital earlier than persons who received a placebo treatment.
The almost magical monoclonal “antibody cocktails” quickly lower the SARS-CoV-2 viral load in an infected person’s body and kept them from progressing to the point where hospital care was needed. These antibodies have also been highly effective in protecting high-risk residents of nursing homes from the viral infection when given to them after exposure to the virus.
This therapeutic technology was first discovered and developed as treatment for and protection against HIV over 15 years ago. The years of knowledge and clinical experience gained from studies of these anti-HIV antibodies allowed design and production of similar “antibody cocktails” for COVID-19 in a matter of weeks.
Finally, almost everyone in our world has been awed at how fast multiple preventive vaccines have been designed, developed and now used to protect persons from COVID-19. A developmental timeline which historically took 10 or more years was necessarily and successfully compressed into a few months.
While we still lack an effective vaccine to protect persons from HIV, it is not for lack of trying. Ever since HIV was discovered in 1983, scientists have conducted thousands of laboratory experiments, hundreds of animal studies and clinical trials testing possible vaccine strategies.
The laboratory technology, results from animal and human safety and effectiveness studies, developed over almost four decades of HIV vaccine research, paved a clear and relatively simple pathway for developing safe and effective COVIC-19 vaccines.
Here again, years of HIV vaccine research directly fostered COVID-19 vaccines.
In a related manner, the federally funded, highly experienced clinical trial networks originally created to test HIV treatment and prevention strategies were re-purposed almost overnight to recruit, enroll and evaluate thousands of volunteers for many COVID-19 clinical trials.
Without these well-oiled and highly effective networks of experienced clinical researchers, the unprecedented, rapid and high-quality clinical trials of COVID-19 vaccines could not have been accomplished in such record time.
All-in-all, as inadequate and delayed as the United States’ overall public health response to the COVID-19 pandemic was, the pre-existing, extraordinarily high level of technology, research advances and clinical trial expertise derived from our response to the HIV global pandemic allowed our scientific and medical response to the COVID-19 pandemic to flourish and produce life-saving results in record time.
Without the multitude of “lessons learned” over the last 40+ years from responding to HIV, the death and destruction due to SARS-CoV-2 would have been much greater and even more tragic. Thus, we see how our response to the HIV pandemic has changed and improved our world today.
Dr. W. David Hardy is a Board Member of the Foundation for The AIDS Monument. He has worked as an HIV Researcher since 1984 and as a COVID-19 Researcher since 2020.
SPOTLIGHT:
Ruth Tittle, Loyd Tittle & Capitol Drugs
By Irwin M. Rappaport
Ruth Tittle was a founding Board member for the Foundation for the AIDS Monument, and served as Board Secretary for many years. She also served for many years as a board member and officer of the West Hollywood Chamber of Commerce.
In 2017, Ruth received a Rainbow Key Award from the City of West Hollywood. The award was given in recognition of her 16 years of services to the Lesbian and Gay Advisory Board, her work in support of Gay and Lesbian Elder Housing, her service as a board member of the Foundation for The AIDS Monument, her work with her late brother Loyd Tittle as pioneers in affordable prescription services at their pharmacy Capitol Drugs, and for bringing much-needed attention to addiction, mental health, lesbian visibility, preservation of LGBT history, women’s health, and many other aspects and aspirations of the Gay and Lesbian community.
Capitol Drugs Opens
Ruth’s late brother Loyd came to Los Angeles in 1978. In 1986, Loyd purchased a pharmacy called Capitol Drugs, in Sherman Oaks. It was a homeopathic pharmacy. Among other things, Loyd helped customers with supplements that would aid them in recovery from drug and alcohol addiction, based on his own experience as a recovering alcoholic.
In 1990, Loyd opened the West Hollywood location of Capitol Drugs at 8578 Santa Monica Boulevard near the 24 Hour Fitness gym and across the street from the Ramada Plaza hotel. The business expanded in 1991 to include the Power Zone next door to the pharmacy, offering supplements and a juice bar with smoothies and protein shakes.
Holistic and Personal Approach
Much of the success of Capitol Drugs and Power Zone was due to the way Loyd (and, later on, Ruth) and their staff (including VPs Robert Frydrych and Bruce Senesac) cared for their customers.
Ruth explains: “We knew their spouses, their doctors — each customer was treated like someone you knew and cared about. We took a holistic approach, caring for the whole person.”
By the early 1990s, AIDS was the leading cause of death among Americans ages 25 to 44 and had hit Los Angeles particularly hard. AZT was a single-drug treatment which wasn’t effective when the virus began to mutate, and many people couldn’t tolerate the side effects such as extreme nausea. Often, people stopped taking it because it left them no quality of life.
Organizations such as Being Alive and AIDS Project Los Angeles (APLA) worked with Capitol Drugs to get the latest information to their customers about experimental treatments. They organized lectures in Power Zone and Capitol Drugs where doctors would talk about the latest experimental treatment options. People would try anything they’d heard might work. They would try garlic enemas, which made the pharmacy smell like an Italian restaurant. Loyd and Ruth grew kombucha mushrooms in a refrigerator and offered Chinese herbs.
Customers would come into the pharmacy and looked like they might not live more than a few days. This was the case with John Duran three different times, according to Ruth, but fortunately he pulled through! Ten friends from Chicago including Loyd moved to Los Angeles together but only 3-4 survived.
In the early ’90s, Ruth and Loyd would go to four or five memorials a week. Ruth estimates that she lost over 400 friends, customers and employees to AIDS.
Caring for Loyd
Loyd was diagnosed with AIDS in 1988. For four years, Ruth frequently traveled from Lexington, Kentucky to Los Angeles to help care for Loyd, using accrued sick time and paid leave from her government job as a civil engineer.
In 1992, Ruth moved full-time to West Hollywood to care for Loyd and to help him with the businesses. Loyd suffered from cytomegalovirus (CMV) colitis, and as a result he couldn’t absorb nutrition. As with many people with AIDS, this condition led to loss of body mass, commonly known as “wasting.”
Loyd was in the hospital 11 times in his last year. Dealing with insurance companies was a difficult challenge. People didn’t want to lose health insurance coverage, or not be able to get coverage, if the insurer found out he or she had HIV/AIDS.
Ruth wanted Loyd’s insurer to approve paying for a home health care worker, but the insurer denied the request. She learned how to fight with the insurance companies as part of caring for Loyd. With advice from APLA, Ruth finally convinced the insurer to cover home health care because it was much cheaper than the cost of a hospital stay.
As Loyd lay close to death in his apartment, one of his close friends, Steven Bair, came to say goodbye. Steven kneeled down and whispered into Loyd’s ear, “I’ll see you soon.”
Steven died a year later. The last words Loyd said to his sister were: “Ruth take care of the stores, and I love you.”
Loyd died March 6, 1993, at 42 years old.
“One of the things my brother said is that ‘I don’t want people to forget me.’ And that breaks your heart to hear somebody say that.”
A plaque remembering Loyd is on the sidewalk in front of Capitol Drugs, part of the AIDS Memorial Walk. To deal with the grief from the death of her brother and soulmate, Ruth joined the LA Physicians on AIDS Forum and jumped into work running the pharmacies. She created and promoted the West Hollywood Health Fair (held in March and October of each year, except for the current hiatus due to the COVID-19 pandemic).
The Health Fair is an opportunity for local health-conscious businesses to work together and for residents to get healthy and support such businesses. The most recent Health Fair featured more than 70 vendors and attracted more than 2,000 attendees. Later, Ruth became one of the founding members of the Board of the Foundation for The AIDS Monument.
Fear and Discrimination
Drug cocktails (protease inhibitors) finally became available in 1995, and they were a life-saver, a complete game-changer in the treatment of people with AIDS. But in the beginning, Ruth recalls, there was one mail-order company shipping out the medication for the whole country, and the pharmacy had to send them patient information.
Patients were afraid of losing their jobs or housing if their employer or landlord found out they had AIDS. The company promised that it would send out the medication in a plain brown package directly to the patient, but that didn’t happen — it was marked as being from a pharmacy. It would arrive at workplaces and get left in hallways. The controversy and concern led to a push for patient privacy which ultimately helped bring about the federal law, HIPPA.
The Origins of the AIDS Monument Project
In 2011, Ruth had been on LGAB (Lesbian & Gay Advisory Board, City of West Hollywood) for 12 years, along with Ivy Bottini who had then served on the advisory board for 11 years. Each year, LGAB would pick its top three issues they wanted to work on, but for a number of years, the idea of an AIDS monument didn’t make it into LGAB’s top three.
Ruth wanted to keep pushing the City of West Hollywood to do a monument. Ruth recalls people saying “We don’t have a cure yet. You’re wanting to build a memorial, but we still need to help people.”
And Ruth thought, “If we don’t do it now, look how long it’s been since all these people died. How long do they have to wait before something is done in remembrance of them?”
“So many times,” Ruth recalls sprinkling ashes “off the coast, because they had nowhere to go, they needed cremation to be paid for, they had … no one to call, no family to come to them … Those are the unspoken, un-memorialized, unmarked graves, unrecognized, that we need to honor, for them.”
So, she and Ivy went in to speak to West Hollywood City Councilmember John Duran, who had appointed Ruth to LGAB. Duran said that the City didn’t have the money at the time to build a monument, but Duran mentioned that there were some guys in the community [Craig Dougherty, Jason Kennedy, Conor Gaughan and Hank Stratton] who had been talking about trying to raise money for an AIDS memorial, so he introduced the two women to the three men. [Craig Dougherty wrote a position paper proposing an AIDS monument in 2010, and met with Duran that year].
Ruth, Ivy and some of the guys met at West Hollywood City Hall. Ivy started working on another project, but Ruth kept working with Craig, Jason, Hank and Conor.
Ruth had worked with Mark Lehman on the Gay and Lesbian Elder Housing project, so she contacted Mark and asked if he was interested in working on the AIDS memorial (now called the AIDS monument) project. Mark jumped at the idea, and a group of them met at Joey’s Café and hit it off. After that, the Board was formed and started to grow.
At a health fair at the Grove where Ruth volunteered a number of years ago, she spoke with a man who said his brother died of AIDS. The man didn’t know his brother was sick and he wished he had done something to help his brother.
Ruth told him: “We are building a place where you’ll be able to go anytime you want, and you’ll be able to talk to your brother.”
He said,” I’ll keep watching and when that happens, I’ll be there.”
Ruth sold Capitol Drugs and Power Zone in 2016, thirty years after Loyd opened the first pharmacy location. She currently resides once again in Lexington, KY, near her daughter and grandchildren.
At 70 years old, Ruth hasn’t slowed down. She and her youngest granddaughter already have plans to go to the Dominican Republic to swim with humpback whales during migration season in the spring of 2022.
Reach out to us on email at admin@aidsmonument.org