I wrote this stream of consciousness diary entry the morning my best friend died after suffering AIDS related complications in October 1992. It’s really hard to believe it was 25 years ago.
I rummaged through some old papers tonight and found a partially filled diary that I had forgotten about. What a different time.
I leafed through it and realized it covered the period of time when so many of my friends were dying of AIDS. One page was filled out thoroughly and it turned out to be a vivid reminder of the darkness we lived through. It’s filled with details that stand in such contrast to the changes we enjoy today. The page captures the experience so common to a generation of LGBT people and allies who became so motivated to change the world.
As I reread it for the first time in many, many years, I wondered how young people could possibly understand or appreciate what we went through and how hard we had to fight. I actually found myself somewhat bitter about it.
A proper memorial should seek to tell a person’s story and capture their personality. This is not that. It’s more like article meant to revive an emotional life many of us have chosen to forget and to memorialize our pain,
Bill would be horrified by the relapse of our culture with the rise of the alt-right and the Orange madman he already knew to be insane. It would have been unimaginable.
Were he still alive today, he would be an ardent proponent of PrEP use and access. And he would be, as he was then, an advocate for people of color and transgender people.
He was not only one of the most influential people of my life, he had a massive impact on all of his friends and his community. Together Bill and I launched America’s first gay glossy newsmagazine (it later became a newspaper that continues to publish today, Gay City News in New York); he funded ACT UP and Community Research Initiative on AIDS, AmFAR, GLAAD, HRC and so much else. But his heart, above all things, was the most extraordinary thing he possessed.
I still love you, Bill. And I think of you all the time.
I can’t think of you with out thinking of Amanda Rubin, who introduced us, knowing we’d love one another as deeply as we did.
I know this article and my diary entry does not really capture who you were, but that’s for you and me. That’s our secret.
I still love you. Thank you for being in my life and thank you for continuing to influence it. You gave me gifts I will never lose.
October 16, 1992
Last night we let Bill go.
We decided last night it had to end and we did what we had to do to help him. I made sure he was clean and comfortable and that his favorite music was playing. Dead Can Dance. The neighbors must have know what was up. No one said a word about the music blasting through the night, until at least 5 am.
I swear he loved it.
He knew when I opened the window.
Don’t ask me how I know he knew. He had been unconscious for about 4 days now. Our relationship has been energy for a long time now.
It’s cold outside and the silk white curtains rippled when we opened the window near the head of his bed. At one point it caught Bill’s eyes and Deborah, his sister, told me knew he saw the ripple and in that moment that she realized he was soon going to leave. She had accepted it and was ready.
She got up and turned the music up even louder and we lit a few more candles.
The nurse helped us as best he could. We decided we’d amplify the morphine.
We kept turning up the morphine and adding benydryl to the his port. Every time we added it we all looked at one another, like people in agreement or in a pact or in need of reassurance.
I kept thinking about everything we’d been through to that point. The brain tumor diagnosis, Stantons’ family coming in and trying to take possession of all his belongings after he died, fighting with the insurance companies for drugs and therapies and hospitals and the banks and the family lawyers, keeping secrets from Bill shit we knew would traumatize him, having to shut the doors off to his family and friends, talking to Bill about the choice of having to shut the magazine down or dump more money into it before he died. He wanted to fund it but his financial status was not clear and I couldn’t bring myself to go to his bedside with his check book again. The damned will. How many times are people going to call him before he dies. I don’t care. Everything is so just out of reach.
I’ve spent so much of the last year living here and ignoring my boyfriend. I’ve tried to included him, but who the hell would want that? Douglas has grown away from me and I am distant. I don’t want to hurt him. I don’t think it’s fair that we try to stay together but maybe now that Bill has died we can try again and pick up where we were. But where were we? There really never was a moment in the last 4 years that I wasn’t consumed by someone among my friends dying. He’s managed to dodge that bullet; I am not aware of any of his friends dying.
Why am I thinking about me? Oh, maybe because I don’t think of me at all?
I have given over the better part of these past few years bouncing between hospitals on a near daily basis and taking care of everyone. My entire family of friends centers around them. Chris, Stanton, Bill, Eric, Joshua, Mark and running to Tennessee to say goodbye to Dan. And now David. God damnit. What fucking god? Wow, I wrote that down? Nothing is untouched. My entire world is disconnected by my attachments to this. I live and breath not much else.
Last night when Bill was dying, I was holding his hand and his sister Deborah’s hand. We had been unable to speak or cry aloud and and our tears were streaming in silence. We knew he was in his final moments. He began gasping for air, like a fish out of water. He was drowning. His chest was heaving and pausing and the pace began picking up and stopping then picking up again and he was making noises I never knew before. We cried aloud and got close to him and said our good byes. I can’t write well enough to recreate his death. It was almost like he saw the possibility of something and was running to it.
God, I thought. I thought of God. Why did I think about God?
Something moved me to tell Bill, “You did not make any mistakes, Bill. You lived a good life, you loved and so many people loved you,” I whispered in his right ear. He turned to me. He turned straight into my fae. He look straight at me and I said, “Go peaceful.” After a second he looked away. Maybe god came to my mind because I didn’t want him to go or maybe because I knew how much he had struggled with fundamentalist crap. I wanted him to know he lived a good life. Why did I leave the participle dangling? “Go peaceful.” I will never forget doing that. He was an English major at Georgetown and the last word he heard was a dangling participle.
I swear I saw his soul leave. His eyes brightened and he looked up, so resolute and noble.
I moved away to give him space and his sister stood up and kissed him on the forehead and said good bye. And I went to her side and looked over her shoulder at his face. I had closed his eyes.
There was an energy radiating about his body and I opened all of the windows when the nurse left the room. He called to let Dr. Sonabend know Bill had died. It was only a few weeks ago that he had told me Bill’s brain was being pushed out of the back of his skull. This disease is pure evil.
Debora and I sat with Bill, telling him we loved him. His color changed slowly, then rapidly and I decided we should give him time in solitude and quiet. So we turned the music off and Deborah decided to move the candles to the window, slowly and kind of ceremoniously.
He was gone. That was it. The rage, the anger, the laughter, love, his opinionated demeanor, joy, the struggles, so much just slipped away. Something tangible flew out the window — his soul left. It resonated through the entire room. Somehow it was hard to believe that the body that was laying in his bed, in the living room of that house on East 11th Street had generated so much passion for so many people, his parties, endless summers in the Pines, his strong character and gregarious, almost aggressive nature. Thank god he got to see Bill Clinton take George Bush down that debate; he loved Clinton, hated all things Republican. We should have let him smell pot as he was dying.
I am waiting for Douglas now. I just called him. He seem surprised and relieved. But he also cried and told me he loved me.
Tony, Kip, Mark and Jan are on their way. Did I call them? I guess Marc or the nurse did. I hope someone calls Michael.
I’m 31 years old. Will this never end? This year has been living hell. There has not been a single minute that AIDS did not occupy my brain. I’m paralyzed. I’m lost.
Bill’s gone. What am I going to do? What now? I have to call D.E.
Everyone is here now. We are all unable to say much. Even crying together is hard. We’re waiting on the mortuary. One by one everyone is going to sit alone with him.
I think they are here. Debra broke down and I want to also, but I want to watch as they get Bill ready.
I just walked outside with him and with the undertakers. I kept my hand on his head the whole way down the steps and into the streets. It’s just so surreal to accompany your best friend’s body into the middle of a busy Manhattan street. They had him draped in purple and gold velvet; I think he would have hated that.
I got to kiss his head again as they move him in and closed the door. I couldn’t take my hand away from the hearse but it pulled slowly away from me.
Scott Morgan passed by while walking his dog as I returned up to the building. He knew instantly. He was so incredibly moved, angry and sweet.
It’s just so quiet here now. I can’t stay. Everything has scattered now.
President’s Emergency Plan for AIDS Relief marks year 20
Achievements PEPFAR have been remarkable, well-documented by outside evaluators, and hugely applauded throughout the advocacy community
WASHINGTON – The President’s Emergency Plan for AIDS Relief (PEPFAR) marks its twenty year anniversary today, marking the largest commitment by any nation to address a single disease in the world.
The initiative which was personally led and launched by former President George W. Bush in 2003, its funding has totaled more than $110 billion to date, including funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), to which the U.S. government is the largest donor.
PEPFAR is credited with saving millions of lives and helping to change the trajectory of the global HIV epidemic. The White House today released a statement by President Joe Biden marking the 20th Anniversary:
Twenty years ago today, President George W. Bush declared that preventing and treating HIV/AIDS was a foreign policy priority of the United States. At a time when nearly 30 million people were HIV positive, but very few were receiving life-saving medicines, the President’s Emergency Plan for AIDS Relief (PEPFAR) transformed the global AIDS response and laid a marker for America’s commitment to countries that were impacted the hardest by the AIDS epidemic. Helping lead the bipartisan effort in Congress to authorize PEPFAR is among my proudest achievements from my time in the Senate. To this day, PEPFAR remains a powerful example of America’s unmatched ability to drive progress and make life better for people around the world.
Since 2003, PEPFAR has saved more than 25 million lives and dramatically improved health outcomes in more than 55 partner countries. AIDS-related deaths have declined by 68 percent since their peak in 2004, and new HIV infections are down 42 percent. PEPFAR investments have ensured that 5.5 million babies have been born HIV-free. And two decades of investment in partner nations’ health systems played a critical role in countries’ ability to respond to other health crises such as COVID-19, Mpox, and Ebola.
Today, PEPFAR continues to support 20.1 million people around the world with HIV/AIDS treatment, and my Administration is committed to continuing to lead the global HIV/AIDS response. We will build on our decades of progress to reach the Sustainable Development Goal of ending AIDS by 2030, work to eliminate the stigma and inequities that keep people from accessing care, and keep the voices of people living with HIV/AIDS at the center of our response. I look forward to working with Congress on PEPFAR’s reauthorization this year.
PEPFAR is overseen by the U.S. Global AIDS Coordinator, who is appointed by the President, confirmed by the Senate, and reports directly to the Secretary of State, as established through PEPFAR’s authorizing legislation.
PEPFAR’s original authorization established new structures and authorities, consolidating all U.S. bilateral and multilateral activities and funding for global HIV/AIDS. Several U.S. agencies, host country governments, and other organizations are involved in implementation.
Dr. John Nkengasong, the current coordinator was sworn in on June 13, 2022, and holds the rank of Ambassador leading the Office of the Global AIDS Coordinator (OGAC) at the U.S. Department of State.
Twenty years ago this month, President George W. Bush announced #PEPFAR during his State of the Union address. Since then, the U.S. government has invested $100B+ in the global HIV/AIDS response through PEPFAR, saving 25M lives & bringing us closer to #EndAIDS2030. #PEPFAR20 pic.twitter.com/SMAOHWPZ03— PEPFAR (@PEPFAR) January 11, 2023
Nobel Prize winning scientist Harold Varmus, who served as Director of the National Institutes of Health (NIH) from 1993 to 1999 and currently the Lewis Thomas University Professor of Medicine at Weill Cornell Medicine in New York City, wrote in an article honoring World Aids Day 2013:
[…] “the PEPFAR story must begin with George W. Bush and his wife, Laura, and their interests in AIDS, Africa, and what Bush termed “compassionate conservatism.” According to his 2010 memoir, Decision Points, the two of them developed a serious interest in improving the fate of the people of Africa after reading Alex Haley’s Roots and visiting The Gambia in 1990.3 In 1998, while pondering a run for the U.S. presidency, he discussed Africa with Condoleezza Rice, his future secretary of state; she said that, if elected, working more closely with countries on that continent should be a significant part of his foreign policy. She also told him that HIV/AIDS was a central problem in Africa but that the United States was spending only $500 million per year on global AIDS, with the money spread across six federal agencies, without a clear strategy for curbing the epidemic.”
Key Facts (As provided by Kaiser Health & Family Foundation)
- Although the U.S. has been involved in efforts to address the global AIDS crisis since the mid-1980s, the creation of the President’s Emergency Plan for AIDS Relief (PEPFAR) in 2003 marked a significant increase in funding and attention to the epidemic.
- PEPFAR is the largest commitment by any nation to address a single disease in the world; to date, its funding has totaled more than $110 billion, including funding for the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund), to which the U.S. government is the largest donor. PEPFAR is credited with saving millions of lives and helping to change the trajectory of the global HIV epidemic.
- U.S. funding for PEPFAR grew from $2.2 billion in FY 2004 to $7.0 billion in FY 2022; FY 2022 funding includes $5.4 billion provided for bilateral HIV efforts and $1.6 billion for multilateral efforts ($50 million for UNAIDS and $1.56 billion for the Global Fund).
- As the COVID-19 pandemic continues to have profound effects across the world, PEPFAR has acted to respond to COVID-19 in countries that receive support in order to minimize HIV service disruptions and leverage the program’s capabilities to address COVID-19 more broadly.
- Looking ahead, PEPFAR faces several issues and challenges, including how best to: address the short- and long-term impacts of COVID-19 on PEPFAR and the HIV response; accelerate progress toward epidemic control in the context of flat funding; support and strengthen community-led responses and the sustainability of HIV programs; define its role in global health security and broader health systems strengthening efforts; and continue to coordinate with other key players in the HIV ecosystem, including the Global Fund.
Key Activities and Results (As provided by Kaiser Health & Family Foundation)
PEPFAR activities focus on expanding access to HIV prevention, treatment, and care interventions. These include provision of antiretroviral treatment, pre-exposure prophylaxis, voluntary male circumcision, condoms, and other commodities related to HIV services. In addition, PEPFAR has launched specific initiatives in key strategic areas. For example, in 2015, PEPFAR launched DREAMS, a public-private partnership that aims to reduce HIV infections in adolescent girls and young women.
The latest results reported by PEPFAR indicate that it has:
- supported testing services for 63.4 million people in FY 2021;
- prevented 2.8 million babies from being born with HIV, who would have otherwise been infected;
- provided care for more than 7.1 million orphans and vulnerable children (OVC);
- supported training for nearly 300,000 new health care workers; and
- supported antiretroviral treatment for 18.96 million people.
- In the 15 countries implementing the DREAMS initiative, new diagnoses among adolescent girls and young women have declined with most DREAMS areas (96%) experiencing declines greater than 25% and nearly two-thirds with declines greater than 40%.
The achievements of the PEPFAR program have been remarkable, well-documented by outside evaluators, and hugely applauded throughout the advocacy community and the developing world. In general, milestones have been met, the program has been enlarged (for instance, to include some research on implementation of medical assistance), the roster of PEPFAR countries has grown and spending plans have not been exceeded.
FDA eases blood donation restrictions for gay & bisexual men
The FDA’s proposal would lift the mandatory three-month deferral period for some men who have sex with men
SILVER SPRING, Md. – The U.S. Food and Drug Administration (FDA) introduced a proposed change to its blood donation guidelines on Friday that would ease restrictions for gay and bisexual men.
The FDA notes the proposal, news of which was first reported in November, would bring U.S. policies in alignment with those in place in countries like the U.K. and Canada. The agency is expected to formally adopt the new guidelines after a public comment period.
The move follows criticism from LGBTQ groups and organizations like the American Medical Association (AMA) who have long argued the current policy is homophobic and based on an outdated understanding of the risks associated with blood donation by men who have sex with men.
As the AMA wrote of the current policy: “a man who has protected sex with another man in the three months prior to a blood donation cannot be a donor, but a man or woman who has unprotected sex with multiple partners of the opposite sex over the same time period remains eligible.”
The FDA’s proposal would lift the mandatory three-month deferral period for some men who have sex with men and instead use a “gender-inclusive, individual risk-based questions relevant to HIV risk.”
Potential donors would be asked for information about their sexual history over the past three months. Respondents who indicate they have had sex with one or more new sexual partners would then be asked whether they have had anal sex during this period. Those who answer “yes” would be deferred from blood donation.
Axios noted that as of this morning, about 20 percent of the country’s community blood centers have a one-day supply or less, while the FDA’s broadened eligibility criteria would increase the annual blood supply by two to four percent, citing data from America’s Blood Centers’ daily tracker and the Williams Institute.
U.S. Sen. Tammy Baldwin (D-Wis.) issued a statement celebrating the FDA’s proposal. “As I have long advocated for, this blood donation policy takes a step forward and is better rooted in the most up-to-date science with a focus on individual risk factors, not outdated stigmas that effectively ban gay and bisexual men,” she said.
Baldwin has repeatedly urged the agency to revisit its blood donation policy over the years, including by corralling support from other members of Congress to cosign letters to the FDA in 2014 and 2016, raising the issue again in 2020 as the COVID-19 pandemic exacerbated shortages in the blood supply.
The Congressional LGBTQ+ Equality Caucus also acknowledged the move in a statement by its chair, Rep. Mark Pocan (D-Wis.): “I am glad the FDA is finally moving toward an individual risk-based assessment model, but recognize, based on existing reporting, that many LGBTQI+ people may still be barred from donating,” he said. “I look forward to taking a closer look at the proposed guidelines once they are published and working with the FDA to ensure that any unnecessary barriers are removed.”
Several LGBTQ groups also issued statements celebrating the FDA’s new guidance.
“These changes are 40-plus years in the making, and are a tremendous leap forward toward elevating science over stigma,” said GLAAD President Sarah Kate Ellis. “GLAAD and leading medical experts have long been advocating for guidelines that see and treat LGBTQ people the same as any other person, including as potential donors who want to help others.”
“This new policy removes a decades-long barrier for many in our community – and there is more to do to ensure gay, bisexual and transgender people are no longer unfairly stigmatized when they try to donate blood,” Human Rights Campaign President Kelley Robinson said. “The assessment criteria have flaws, focusing excessively, for instance, on the number of partners a potential donor has instead of just on new partners,” she added.
Carl Schmid, executive director of the HIV+ Hepatitis Policy Institute, said: “While this long-overdue change is being made based on the science and the facts, which have been clear for years, it is the result of the leadership of the Biden administration that continues to tear down discriminatory government policies.”
Experimental HIV vaccine failure, deemed safe but ineffective
“We remain steadfast in our commitment to advancing innovation in HIV & hope the data from Mosaico will provide insights for future efforts”
BETHESDA, Md. – A clinical trial of an investigational HIV vaccine regimen, being conducted in partnership with the National Institute of Allergy and Infectious Diseases (NIAID) by Janssen Pharmaceutical Companies and global partners of parent company Johnson & Johnson dubbed “Mosaico,” was discontinued.
In an announcement made Wednesday, NIAID said the HIV vaccine regimen tested among men who have sex with men (MSM) and transgender people was safe but did not provide protection against HIV acquisition, an independent data and safety monitoring board had determined.
A spokesperson for Johnson & Johnson noted in light of the board’s determination, the Mosaico clinical trial will be discontinued. Participant notifications and further analyses of the data are underway. Throughout the trial, study investigators have ensured that any individuals who contracted HIV received prompt HIV treatment and care.
Both Johnson & Johnson and NIAID stressed that no safety issues with the vaccine regimen were identified.
“We are disappointed with this outcome and stand in solidarity with the people and communities vulnerable to and affected by HIV,” said Penny Heaton, M.D., Global Therapeutic Area Head, Vaccines, Janssen Research & Development, LLC. “Though there have been significant advances in prevention since the beginning of the global epidemic, 1.5 million people acquired HIV in 2021 alone, underscoring the high unmet need for new options and why we have long worked to tackle this global health challenge. We remain steadfast in our commitment to advancing innovation in HIV, and we hope the data from Mosaico will provide insights for future efforts to develop a safe and effective vaccine. We are grateful to our Mosaico partners and the study investigators, staff and participants.”
Janssen Vaccines & Prevention sponsored the Mosaico study with funding support from NIAID, part of the National Institutes of Health. The trial was conducted by the NIAID-funded HIV Vaccine Clinical Trials Network, based at the Fred Hutchinson Cancer Research Center in Seattle. The U.S. Army Medical Research and Development Command provided additional study support.
The Phase 3 Mosaico Study:
Mosaico, a Phase 3 study of Janssen’s investigational HIV vaccine regimen, began in 2019, and completed vaccinations in October 2022. The study included approximately 3,900 cisgender men and transgender people who have sex with cisgender men and/or transgender people, who represent groups and populations vulnerable to HIV, at over 50 trial sites in Argentina, Brazil, Italy, Mexico, Peru, Poland, Puerto Rico, Spain and the United States.
The study evaluated an investigational vaccine regimen containing a mosaic-based adenovirus serotype 26 vector (Ad26.Mos4.HIV) administered during four vaccination visits over one year. A mix of soluble proteins (Clade C/Mosaic gp140, adjuvanted with aluminum phosphate) was also administered at visits three and four.
The Mosaico DSMB analysis, based on the data available to date, indicated that the regimen does not protect against HIV and the study is not expected to meet its primary endpoint. No safety issues with the vaccine regimen were identified. In light of this, the study will be discontinued, and further analyses are underway.
Patti LaBelle, Gladys Knight dazzle World AIDS Day concert
“As millions remain affected by HIV/AIDS, World AIDS Day provides an opportunity to honor those we’ve lost and those living with HIV/AIDS”
WASHINGTON – The AIDS Healthcare Foundation (AHF) hosted its 2022 World AIDS Day Concert on Wednesday, Nov. 30, in the concert hall of The John F. Kennedy Center for the Performing Arts in the nation’s capital.
Renowned multi-Grammy Award-winning vocalists Patti LaBelle and Gladys Knight delivered show-stopping performances to the packed crowd, which included supporters, dignitaries such as: Harold Phillips, Director of the White House Office of National AIDS Policy; White House Senior Advisor for Public Engagement, Mayor Keisha Lance Bottoms, Congresswoman Sheila Jackson Lee, and New Orleans Mayor, Mayor LaToya Cantrell, and more, in a night of hope and celebration.
AIDS Healthcare Foundation (AHF), is the world’s largest HIV/AIDS care provider, currently operating in 45 countries. The concert is held every year to commemorate World AIDS Day, observed internationally each year on Dec. 1. This year also marked the global organization’s 35th anniversary.
At the event, longtime humanitarian and AIDS advocate, Princess Diana was honored, posthumously, with AHF’s Lifetime Achievement Award. Under its “Keep the Promise!” banner, AHF also acknowledged progress made in the global fight against HIV and AIDS and continues to raise awareness about “The Other Pandemic” as a reminder of the significant work still to be done on HIV/AIDS, as well as remembering the lives that have been lost over the years.
Michael Weinstein, President of AHF, said, “As millions remain affected by HIV/AIDS around the globe, World AIDS Day annually provides an opportunity to honor those we’ve lost and those living with HIV/AIDS today, as well as reminding leaders and the community of the work that still remains to address this epidemic. From providing compassionate AIDS hospice care in those darkest early days to growing to become the largest global AIDS organization today, now providing lifesaving care and treatment to more than 1.7 million people around the globe, we also celebrate the tireless work of all those who help make today’s AHF possible: our staff, Board, affiliate organizations and affinity groups, friends, family and elected officials and community partners across the globe, but most of all, our clients and patients—with our annual 2022 World AIDS Day event. It was a momentous night to host our World AIDS Day concert at The Kennedy Center for the first time, and welcome back the legendary Patti LaBelle, and have another great American icon, Gladys Knight join us, while also being able to honor the legacy and humanitarian work of the late Princess Diana.”
Cleve Jones, activist & founder of AIDS Memorial Quilt honored
National AIDS Memorial hosted observances at the 10-acre Memorial Grove and displaying Quilt in nearly 100 communities throughout the U.S.
SAN FRANCISCO – The National AIDS Memorial marked World AIDS Day with a national observance at the 10-acre National AIDS Memorial Grove in San Francisco, honoring AIDS activist and founder of the AIDS Memorial Quilt Cleve Jones with its Lifetime of Commitment Award.
The two days of events brought together leaders on the front lines of the epidemic for powerful conversations and events focused on “Changing the Pattern for a Future without AIDS,” referencing a major initiative of the Memorial that is bringing the Quilt to the South to address the growing crisis of rising HIV rates amount communities of color and marginalized populations.
Jones, who founded the Quilt thirty-five years ago, was recognized for his visionary leadership, activism, and powerful voice in the fight for health and social justice. He remains an inspirational force for change and action today, standing up without hesitation and using his voice for those who are often overshadowed and not heard.
U.S. House Speaker, Rep. Nancy Pelosi (D-Cailf.) praised Jones in a special video tribute, saying, “Cleve, you are a force of nature – unshakable in the face of adversity, overflowing with a passion for serving others.”
“When the AIDS crisis tightened its grip on San Francisco – when pain and despair grew rampant – you kept hope alive,” she continued. “You were a shining light in the dark, building community out of grief and spurring action out of anguish. From the halls of power to union halls and picket lines, you have never relented in your mission: empowering the oppressed, tearing down injustice and honoring the dignity and beauty of every person.”
Presenting the award to Jones was former San Francisco mayor and mentor Art Agnos to an audience of more than 600 people from the community who gathered on the eve of World AIDS Day for a gala to support the Memorial’s programs.
“I’m honored to receive this award, but more importantly I’m so pleased that the Quilt now has a permanent home with the National AIDS Memorial and that it is continuing its mission of activism and justice. One thing I’ve learned is that through hope one finds courage and through courage we find love. Love is at the core of what we do and that is what this Quilt represents,” Jones told the audience gathered.
The National AIDS Memorial worked with local partners from across the country to display hundreds of Quilt sections featuring more than 3,500 individual panels in nearly 100 communities on World AIDS Day.
The largest Quilt display ever in Alabama is taking place in Montgomery and surrounding areas as part of the memorial’s Change the Pattern initiative. The program, funded through a $2.4 million grant from Gilead Sciences, is organizing quilting workshops, displays and educational programming with Southern AIDS Coalition throughout the Southern U.S.
“On this World AIDS Day, it is inspiring to know that thousands of Quilt panels are on display in communities across the country, touching hearts and minds through the stories represented in the fabric,” said Gilead Sciences Chairman and CEO Daniel O’Day. “The Quilt’s purpose remains as strong and important today, as it was thirty-five years ago, when the vision of Cleve Jones sparked a powerful movement to advance health and social justice.”
The National AIDS Memorial’s World AIDS Day Observance panelists highlighted the importance of the work being done around the country, the interconnectivity of issues to reach zero, and the importance of education and outreach to at-risk populations during three powerful conversations available for viewing online on the memorial’s website and include: Reflections with Cleve Jones and 35 years of the Quilt; The State of the Epidemic Today with Leaders on the Frontlines; and Young Leaders Making an Impact.
“As our community comes together this World AIDS Day, it’s hard not to look around and see who’s missing – our friends, lovers, and family we’ve lost over four decades of this horrific, cruel disease,” said National AIDS Memorial CEO John Cunningham. “It always brings tears, and we carry so many emotions, particularly as we think of what could have been. But for me, as a man living with HIV/AIDS, I shift to a brighter space, choosing to look around me, thinking about so many of us still here, living and thriving. Survivors, who have so much to be thankful for, but also a heavy burden to share our own stories and journey, so history never repeats itself.”
He continued, “Today, people are still dying and there should have been a cure long ago. We are angry because bigotry, hate, and stigma persist today in society. And we carry shame, because communities of color and marginalized populations continue to be disproportionately impacted by HIV and discrimination, and it shouldn’t be this way. It’s time to change the pattern.”
Translatinx network helps a resilient community ‘Live Its Truth’
“We’re trying to push ourselves to the next level through community empowerment and leadership development”
NEW YORK – When Cristina Herrera was 15 years old, she traveled alone from Southern California to the Bronx in pursuit of new life experiences. A native of El Salvador, Cristina thought as a teenager that she was different, but she was unsure about which terminology fully captured her identity.
“I knew that I wasn’t gay,” explains Cristina. “But I couldn’t put into words as to who I was.”
It was only through connecting with the trans Latinx community in New York that Cristina found herself – and came out as transgender.
When Cristina began her gender transition in the mid-1980s, she says there were barely any employment opportunities for a transgender person. To survive, many immigrant trans women in Cristina’s circle engaged in sex work and became more susceptible to contracting HIV. Policing and arrests of sex workers also put their immigration statuses in peril, and stigma exposed them to violence. It was during this time that Cristina became set on improving the lives of trans Latinx people.
“My community was already informally supporting one another,” she says. “But I wanted to make sure that other people would never have to go through some of the difficult issues I experienced.”
Determined to fulfill this promise, Cristina put herself through college and landed a job at a nonprofit supporting the LGBTQ+ community. She absorbed as much as she could at the organization, but she started to want a bigger influence on how to serve the community that helped find her identity.
“In 2005, I began dreaming about starting a trans-led, immigrant-led organization,” she says. “My dream came true two years later when I started the nonprofit.”
Today, as the founder and CEO of the advocacy nonprofit Translatinx Network, she serves trans Latinx people in New York City and beyond. The organization, which for the past three years has been a Gilead TRANScend Community Impact Fund grantee, connects people to legal aid, HIV prevention and support groups, and immigration assistance.
In the years since its creation, Cristina and her colleagues have led the charge in providing support and connections for trans Latinx people as they build their communities in the United States.
“Many people in our community went from being in the shadows to becoming documented and getting their green cards or work permits,” she says. “We were showing our community that we don’t have to be stuck – that there’s more to life.”
Cristina is now looking for ways to replicate the success of the organization by gathering information and its outcomes and continuing to expand its services. “We want to stay on the front lines and keep our community healthy and protected,” she says. “We’re trying to push ourselves to the next level through community empowerment and leadership development.”
And Cristina is proud that through her organization’s success, she’s able to serve a population that has historically been left out or forgotten.
“I love any opportunity where I can be there for others,” she says. “I want all of us to be able to live our truth while at the same time fulfill our life goals.”
Ending HIV-related stigma in the Southern U. S.: Gina’s story
“Stigma is an onion with many layers,” Gina says. “We can really do this – we really can, but we have to address the layers that drive HIV”
BIRMINGHAM, Al. – Gina Brown has been living with HIV for 27 years and introduces herself as a social worker by training, but an activist by birth. As the Director of Strategic Partnerships and Community Engagement at the Southern AIDS Coalition, she’s working to fight against challenges that she has personally experienced such as homelessness, addiction and abuse, as well as stigma, racism, sexism and ageism.
“Everything that you could think of when it comes to HIV, I’ve experienced,” she says. “When I’m sitting at the table, I’m not just talking with an employee hat on. I’m talking from a community standpoint as a person on the same journey.”
Stigma can be a significant barrier to receiving HIV care or medical treatment. A 2021 survey by GLAAD and Gilead shows that the U.S. South not only has the highest rates of HIV diagnosis, but it’s also a region that is generally uncomfortable with HIV. Positive test results, in turn, are too often accompanied by secrecy and isolation.
“Stigma kills. I know that sounds like a cliché, but it’s the truth,” Gina says. “It keeps people out of care. It keeps people from taking their medication. It keeps people from disclosing their status. It keeps people from being happy.”
Stigma impacts people everywhere with HIV, but Gina believes in the Southern United States it’s more than just external stigma. “We internalize what people say and think about us. We get caught up in it and actually think those things about ourselves too.”
The Southern AIDS Coalition, a Gilead grantee, focuses on stigma reduction and culturally appropriate care. Education and public health advocacy are core to the organization’s goals of preventing new transmissions and building a better life for people living with HIV.
Using deliberate language to discuss HIV is one important tool the coalition uses to help dismantle stigma, Gina says.
“You go in the room, and you might have somebody who will stand up and say, ‘I’m HIV.’ And I say, ‘No, you’re living with HIV.’ That’s the first thing, getting people to understand that we are living, we’re not dying, we’re not sick, we’re not all of those things,” she says.
Power of Community: Sharing HIV Experiences
Gina also helps facilitate a program called “Out of the Shadows,” with the Institute of Women and Ethnic Studies. The group works to provides a safe space for women in the New Orleans community to share their HIV experiences, improve access to services and overcome feelings of isolation. She says it was her own experience with the community that was critical to helping her regain her confidence after being diagnosed.
“What you see now is not always who I was in this fight. It was people who truly carried me and gave me tools to empower myself. People saw things in me that I never saw in myself,” she says.
Gina now wants to serve as that type of person for those she works with, and she always strives to meet them where they are in their journeys. “If you need to crawl, I will crawl with you. When you start walking, I will walk with you.”
But Gina says with a laugh, “When you start running, you’re on your own because I’m too old to run. I’ll do everything else with you, but I’m not running.”
Ending the HIV Epidemic
Efforts by the Southern AIDS Coalition and other organizations to reduce stigma and discrimination have been highlighted by the United Nations as critical to ending the epidemic. Gina looks with optimism toward the end of the epidemic and the UNAIDS goal to get every community and country on track to end AIDS as a public health threat by 2030.
“Stigma is an onion with many layers,” Gina says. “We can really do this – we really can, but we have to address the layers that drive HIV.”
Iconic landmarks in Los Angeles to light up red on World AIDS Day
This year’s theme, “Putting Ourselves to the Test: Achieving Equity to End HIV,” calls out the disproportionate impact across sub-populations
LOS ANGELES – As Angelenos mark World AIDS Day, several prominent landmarks around Los Angeles County– including Union Station, City Hall/Grand Park Fountain, Dignity Health Sports Park, LAX Pylons, and Six Street Viaduct — will switch their evening architectural lighting to all red to increase awareness about HIV/AIDS, show solidarity in the fight against HIV, and honor those who have died due to HIV disease.
World AIDS Day, observed each year on December 1, provides the opportunity to honor and remember the more than 40 million people worldwide, including over 27,000 Los Angeles County (LAC) residents lost to HIV/AIDS since this epidemic began.
This year’s World AIDS Day theme, “Putting Ourselves to the Test: Achieving Equity to End HIV,” calls attention to the disproportionate impact of HIV across sub-populations, particularly across race, gender, sexual orientation and geographic lines.
Los Angeles County has an estimated 59,400 people living with HIV and in 2021 there were 1,479 new HIV diagnoses reported, mostly among gay men, African-Americans, Latinos, and transgender persons.
“We thank our partners across the community who have been working for decades to increase awareness and prevention of HIV/AIDS and provide services and support for those living with HIV, “and honor those in our communities we lost to this terrible disease,” said Barbara Ferrer, PhD, MPH, MEd, Director of Public Health. “More than anything, as we honor, on World AIDS Day, those in our communities we lost to this terrible disease, we re-commit ourselves to the work to end the HIV/AIDS epidemic, which continues to disproportionately impact communities of color and the LGBTQ community.”
Public Health works with others to help bring an end to the epidemic by reducing the number of new annual HIV infections, decreasing the number of undiagnosed people living with HIV, and increasing the viral suppression rates among people who are diagnosed with HIV.
Public Health collaborates with a broad cross-section of diverse community partners to implement community-driven outreach and education, community-based HIV/STD testing, linkage to care, intensive street-based case management, and clinic-based services. Recently, Public Health has spearheaded innovative programming through our many new Ending the HIV Epidemic (EHE) Initiatives (www.lacounty.hiv), expanded HIV testing access through both community-based partners and the www.takemehome.com testing initiative, ongoing efforts to prevent homelessness among persons living with HIV; enhanced outreach efforts to the transgender community through our TransInLA Instagram and Facebook pages and supporting HIV-positive individuals with accessing lifesaving medication. Research shows that suppressing HIV to undetectable levels virtually eliminates transmission of the virus to sexual partners.
Public Health encourages people to learn more about HIV, know their HIV status, and, if necessary, access free life-saving HIV medications and services. To learn more about HIV and STDs and locate HIV testing, services, and resources, please visit www.getprotectedla.com and http://publichealth.lacounty.gov/dhsp/.
GLAAD study: Signs of progress in efforts to combat HIV stigma
Some of the conclusions from GLAAD’s study have broader applicability to the stigmatization of other diseases and health conditions
NEW YORK – A welcome sign that some progress has been made in efforts to combat stigma, data from a forthcoming study by GLAAD found that Americans have become increasingly comfortable interacting with people who are living with HIV.
GLAAD, the largest LGBTQ media advocacy organization, shared an advance copy of its 2022 State of HIV Stigma Study with the Washington Blade ahead of its release Thursday during World AIDS Day.
The study’s documentation of the substantial increase in the percentage of respondents who said they would feel comfortable interacting with people living with HIV — up from 36 percent in 2020 to 43 percent this year — was hardly the only metric pointing to possible improvements with respect to the stigmatization of HIV in America.
At the same time, other findings in the report present a grimmer picture. As GLAAD President Sarah Kate Ellis said in a statement, the data underscores the need to “dramatically accelerate public health messaging about HIV and visibility about HIV in the media for it to be understood as the treatable, untransmittable and preventable condition it is.”
Ninety percent of respondents said they believe stigma around HIV persists, Ellis noted. And GLAAD’s study offers some insight into how and why, looking at a variety of different types of evidence.
For example, it documents the prevalence of false and medically inaccurate beliefs about how and to whom the virus is transmitted (revealing that fewer people now believe “only certain groups of people get HIV.”) It assesses the extent to which respondents saw stories in the media about people living with HIV (with only one in three reporting that they had.) And it provides some insight into the relative efficacy of public health messaging around risk reduction strategies (a good sign: Knowledge about the use of pre-exposure prophylaxis for the prevention of HIV has increased.)
Some of the conclusions that can be gleaned from GLAAD’s study have broader applicability to the stigmatization of other diseases and health conditions.
Last month, the group published a summary of its qualitative interviews on stigma, writing: “We heard people mention a few similarities between COVID-19 and HIV as it relates to the stigma that both viruses carry, much of it centered around an initial lack of education, and fear of transmission.”
As Ellis said in her statement about the forthcoming study, “Newly-released data show how stigma, inadequate resources and lack of comprehensive public health messaging set back the fight against HIV during the COVID-19 pandemic and delayed response to the monkeypox virus (mpox) outbreak this year.”
GLAAD has published annual State of HIV Stigma Studies since 2020, a project that is funded by Gilead’s COMPASS initiative. The report can be found on the group’s End HIV Stigma page, with a downloadable PDF available here.
Biden outlines plan to renew fight against HIV/AIDS
Biden on the eve of World AIDS Day outline ways his administration will fight the HIV/AIDS epidemic in the U.S. & globally
WASHINGTON – President Joe Biden detailed how his administration plans to improve the lives and health outcomes for people living with HIV/AIDS while strengthening treatment and prevention efforts at home and abroad in a statement published Wednesday on the eve of World AIDS Day.
Proposed healthcare reforms on the domestic agenda included improving access to lifesaving treatments, broadening the use of preexposure prophylaxis (PrEP) to reduce the rate of new infections, and strengthening efforts to reduce stigma associated with the disease. Biden noted his request for $850 million from Congress to fund these initiatives.
Policy wise, he highlighted the administration’s pressure on the Armed Forces to sunset rules prohibiting deployments and commissions for servicemembers with HIV, and on state legislatures to repeal HIV criminalization statutes used to prosecute people for exposing others to HIV.
Internationally, the president said, “My administration has also pledged up to $6 billion to the Seventh Replenishment of the Global Fund to Fight AIDS, Tuberculosis, and Malaria — an initiative that has saved an estimated 50 million lives to date.” He called on other countries to match the pledge “so we can together deliver on the promise of health and well-being for millions around the world.”
“World AIDS Day presents an opportunity to renew America’s commitments to fighting the disease,” Biden said, while also acknowledging the tremendous progress in science, medicine, public health, and other arenas that have made the prospect of an end to AIDS and the worldwide transmission of HIV achievable. “At the same time, while these advancements have saved so many lives, they also exposed longstanding racial and gender-based disparities in access to prevention and care.”
“For the more than 38 million people around the world now living with HIV — especially members of the LGBTQI+ community, communities of color, women, and girls — a diagnosis is still life-altering,” Biden said. “We can do better.”
“As we today honor the 700,000 Americans and 40 million lives lost worldwide to AIDS-related illnesses over the years, we have new hope in our hearts,” the president’s statement concludes. “We finally have the scientific understanding, treatments, and tools to build an AIDS-free future where everyone — no matter who they are, where they come from, or whom they love — can get the care and respect they deserve.”
The full statement is available here.
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