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EQCA filling LGBTQ COVID-19 resource need, echoing early days of AIDS

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House Speaker Nancy Pelosi on Twitter May 17, delivering commencement address to Smith college

The coronavirus pandemic has upended normality and the once seemingly inevitable full equality for LGBTQ people. One year ago, on May 17, the US House of Representatives passed the historic Equality Act, legislation that would amend the Civil Rights Act of 1964 to include sexual orientation and gender identity. But Republican Senate Majority Leader Mitch McConnell refuses to bring the nondiscrimination legislation up for a vote, leaving LGBTQ equality dangling as the Trump administration meticulously strips away hard-won rights and the conservative-dominant U.S. Supreme Court is poised to rule on whether federal job protections for LGBTQ people under Title VII are constitutional.

If the Court strikes down those protections, federal employees and workers in 28 states without LGBTQ employment nondiscrimination laws —  including essential first responders and healthcare workers — could be quietly, individually, unceremoniously fired, adding to the burgeoning roster of the unemployed, which in April hit 14.7%, the highest rate since the Great Depression. What will happen to LGBTQ people in states with nondiscrimination laws?

But even if by some miracle the Equality Act makes it to the Oval Office, it may not feel the flare of President Trump’s special sharpie since he opposes the legislation, despite his love affair with former Fox contributor Ric Grenell, the gay Ambassador to Germany.

House Speaker Nancy Pelosi didn’t let the anniversary of the Equality Act pass unnoticed, however. Last year, she wore a rainbow wristband as she orchestrated the 236-173 bipartisan vote, invoking both the Founding Fathers and the 50th anniversary of the Stonewall riots on the House floor. This year, her passion for LGBTQ equality was laced with tempered rage.

“This year, the ongoing challenge posed by the unprecedented coronavirus pandemic reaffirms our urgent responsibility to reject the violence, bigotry and hate that weaken and divide our communities,” Pelosi said, in part. “For LGBTQ individuals at home and around the world who are persecuted because of who they are or whom they love, we must speak out and demand action.  We cannot stay silent while the Trump Administration’s callous, anti-LGBTQ agenda continues to dismantle decades of hard-won progress by stripping LGBTQ Americans of their rights and their dignity.  And we cannot stand by while the Administration abandons our global leadership in the fight against anti-LGBTQ violence and discrimination.”

Powerful words that comfort and inspire, hang in the air, then vanish. Today, like the beginning of the AIDS crisis three decades ago, LGBTQ people are disappearing, identities erased by government neglect, the weight of bureaucracy, and the lack of action, despite good intentions.

On May 19, there were 1.56 million confirmed cases of COVID-19 in the United states, with 92,258 deaths. The government collected data on gender, age, race and ethnicity – but how many of these human beings were LGBTQ?

On the afternoon of May 19, the state of California reported a total of 81,795 cases of coronavirus, with 3,334 deaths. California has the largest LGBTQ population in the country so how many of these people are LGBTQ?

On the afternoon of May 19, the Los Angeles County Department of Public Health identified 39,573 positive cases of COVID-19, with a total of 1,913 deaths, noting that 92 percent of the people who died had underlying health conditions.

“An interactive dashboard is available that provides an overview on COVID-19 testing, cases and deaths along with maps and graphs showing testing, cases and death data by community poverty level, age, sex and race/ethnicity,” says a Public Health press release promoting their website, www.publichealth.lacounty.gov. Sexual orientation and gender identity are not included.

For LGBTQ people who survived the AIDS crisis, the pain of this erasure evokes a “safer-at-home” primal scream.

“[E]ssentially no data is being collected in California or elsewhere about COVID-19 impacts on the LGBT community on infection rates, on hospitalization rates, on death rates — that data simply isn’t being collected,” said out State Sen. Scott Wiener on a Zoom news conference May 13 before testifying before the California Senate Health Committee on his LGBTQ data collection bill, SB 932. “It is appalling that we have the ability to collect the data and it’s simply — it’s an afterthought. And that is, unfortunately, the history of the LGBTQ community where we have to fight against invisibility all the time, we have to fight to be counted.”

Equality California Executive Director Rick Chavez Zbur was pained to say that “the fight before us just about collecting this data reminds me more of the 1980s than I want to admit. For our community to once again be erased and ignored, to have our government look the other way as our community dies nearly four decades later, it’s just appalling, it’s unacceptable.”

The difference between the 1980s and now though, Zbur said, was that today the LGBTQ community has openly LGBTQ leaders and allies working to correct the dire inequality the COVID-19 pandemic has exposed.

But it doesn’t feel that way.

There was plenty of time to kick existing LGBTQ health and death data laws into gear, tailoring unique messages, mentioning the LGBTQ community as one of the minority groups at greater risk for infection and inviting help to test and track LGBTQ COVID-19 cases.

“This new virus represents a tremendous public health threat,” Dr. Nancy Messonnier, director of the National Center for Immunization and Respiratory Diseases, told reporters on a telephonic news briefing Tuesday, Feb.25, when the Los Angeles Blade first starting covering the COVID-19 crisis.

“Ultimately we expect we will see community spread in this country,” she said. “It’s not a question of if this will happen but when this will happen and how many people in this country will have severe illnesses ….We are asking the American public to prepare for the expectation that this might be bad.”

At a Feb. 27 news conference, California Gov. Gavin Newsom said there was no coronavirus emergency in the state but 33 people tested positive, most quarantined travelers on the Diamond Princess cruise ship, adding that following protocol, California was monitoring more than 8,4000 people who flew from Asia to California.

Meanwhile, a woman from Solano County tested positive for COVID-19 on March 1, appearing to be the first US case for which there was no known source for the illness. But at a Newsom news conference, California Health and Human Services Secretary Mark Ghaly noted that the woman had been sick in the community well before she was hospitalized. Contact tracing revealed that two Los Rios Community College District college students, working as medical professionals, had come in contact with her and were being isolated and “treated” in Sacramento County. Additionally, three UC Davis roommates were under 14-day isolation “out of an abundance of caution” after one showed mild symptoms, according to the Los Angeles Times.

And then there was the whistleblower who revealed that HHS “sent more than a dozen workers to receive the first Americans evacuated from Wuhan, China, the epicenter of the coronavirus outbreak, without proper training for infection control or appropriate protective gear,” the Washington Post reported. “The workers did not show symptoms of infection and were not tested for the virus, according to lawyers for the whistleblower. Out Rep. Mark Takano was furious when those evacuees were sent to March Air Force Base in Southern California.

Three months ago, HHS, the CDC, the State of California, and LA Public Health knew there was a strong likelihood that community spread of COVID-19 would be bad but didn’t gear up to protect first responders, healthcare workers or the public. Nor did they extend collection of demographic data needed to track outbreaks beyond gender and age when West Hollywood, LA and California declared a health emergency.

LGBTQ people were good citizens, responsibly taking part in the greater mitigation effort when officials ordered large gatherings to be cancelled  and businesses closed.

On March 11, an open letter from more than 100 organizations specifying how COVID-19 could impact LGBTQ communities was distributed to the media, healthcare workers and public officials. It outlined how COVID-19 “may pose an increased risk to the LGBTQ+ population” with vulnerabilities and underlying medical conditions and laid out “specific steps to minimize any disparity.” For instance: 37% of LGBTQ adults smoke every day compared to 27% of non-LGBTQ people; 21% of LGBTQ people have asthma, compared to 14% of non-LGBTQ people.

“[W]e need to make sure the most vulnerable among us are not forgotten. Our smoking rates alone make us extremely vulnerable and our access to care barriers only make a bad situation worse.” noted Dr. Scout, the Deputy Director for the National LGBT Cancer Network, “This letter outlines simple steps to ensure no population is further stigmatized by a virus.”

The LGBTQ community responded. “The situation with COVID-19 is changing quickly. I don’t know whether we will be closed for a few days, a few weeks or even longer. Until our public health officials can assure us that it is safe, we will remain closed,” David Cooley wrote in a March 16 Facebook post announcing he was shutting down The Abbey in West Hollywood. “I am saddened that it has come to this. If staying open caused the pandemic to spread more quickly, I would be inconsolable. I know this crisis will pass. When it does, we will all celebrate together.”

Meanwhile, Trump began a pattern of lies and magical thinking. “It’s going to disappear,” Trump assured the world on March 17, having previously declared the coronavirus was “well under control” in this country.

The LGBTQ nonprofit safety net started to fray, but they bucked up to behave responsibly, as well. The LA LGBT Center said they were starting tele-health contacts, protecting seniors, homeless youth and staff from COVID-19; Project Angel Food issued a dire call for volunteers and the [email protected] Coalition closed but still provided food and sought shelter for clients.

Accustomed to equality in Southern California, LGBTQ people felt part of the larger community response. In a March 16 phone interview, LA Mayor Eric Garcetti recalled the community’s historic experience with the AIDS crisis.

“This community has been through tougher days than this and the most important thing is to not only be resilient but to be calm,” Garcetti told the LA Blade. “The LGBTQ community — which has seen what spread can do to a community and how devastating it can be — can really be the leaders of influencing in our workplaces, with our families and with others.”

The LGBTQ and HIV/AIDS communities did their part. The Los Angeles County Commission on HIV  released an Interim Guidance for healthcare providers and persons living with HIV and underscoring the statewide and local “Safer At Home” orders. And nonprofit leaders such Jeffrey King, founder and executive director of In The Meantime Men, found ways to address issues no one else was discussing.

“The coronavirus has us all making major adjustments in our lives,” King said in a video posted on his Facebook page. “I want to encourage you to stay connected, and to consider your risk. Many of us are still engaging in sex. Our sex clubs and gay-specific social venues are closing now. Our social dating apps, however, are in full effect. Again – I want you to consider your risk and to act responsibly.”

But LGBTQ people started disappearing and dying, including icons such as playwright Terrence McNally.

Then, towards the end of March came the surge. Frontline community clinics and health centers that faced a shortage of test kits and medical supplies pleaded for help. Jim Mangia, Chief Executive of St. John’s Well Child and Family Center, one of the few LA-area clinics that serve transgender clients of color, told reporters on a March 24 conference call that the situation was dire. The week before, 879 patients “were required to be placed in triage tents to isolate them from other patients,” the LA Times reported. No data on how many clients were transgender.

“Public health officials across California report that the number of COVID-19 patients in intensive care units (ICU) doubled overnight. As of 2 pm. Saturday, the state now has 4,643 confirmed cases and 101 deaths, a spokesperson for the California Department of Public Health (CDPH) told the Los Angeles Blade Saturday afternoon, adding that approximately 89,600 tests had been conducted as of March 27,” the LA Blade reported. Newsom was bracing for a possible torrent of new infections with testing increasingly becoming an issue.

“There’s as much as ten times as many cases of coronavirus infection than is being reported,” a medical worker at the Cedars-Sinai Medical Center told the Blade. “I think that the death count is very likely much higher, because the criteria for testing is so strict. So, we don’t really know the actual infection rate or mortality rate is currently.”

But no one was talking to the LGBTQ community. Finally, attorney and West Hollywood City Councilmember John Duran started posting daily updates on his personal Facebook page — including one with a frank discussion about having sex in a pandemic.

On April 4, the LA Blade posted a number of essential LGBTQ services, including The Trevor Project which said its crisis contact volume spiked at nearly twice normal volume, especially as COVID-19 forced LGBTQ young people to return to or remain in unsupportive or abusive environments. (The Trevor Project’s TrevorLifeline 24/7 can be reached at 1-866-488-7386, via chat at TheTrevorProject.org/Help or by texting 678-678.)

That was also the day the LA Blade finally got through during Newsom’s regular news conferences and asked if the newly announced website (covid19supplies.ca.gov) met the specific health and economic needs of LGBTQ Californians, especially those living with HIV and LGBTQI+ residents solely dependent on the gig economy.

“Yeah, from across the spectrum from addressing homeless youth — particularly in LA County. So, the answer is ‘yes’ — from an LGBTQ perspective but also from a geographical perspective. And from an age perspective as it relates to finding more federal resources for housing opportunities for LGBTQ youth and adults. Look, I come from San Francisco, 5th generation, it’s a point of deep pride when we talk in terms of cultural competency, neighborhood by neighborhood,” Newsom said. “The history of the HIV epidemic searing the consciousness of our health care delivery focus — again a bottom-up focus, and yeah, of course that extended to Dr. Fauci, who is very familiar to the folks in San Francisco and within the LGBTQ community as being one of our heroes decades ago, in terms of how he met that moment and he spoke truth in that moment. So, the answer is absolutely ‘yes’ — point of pride for me as a former mayor of San Francisco, who’s deeply attached to the needs and desires and aspirations and the health of our LGBTQ community.”

“We are always grateful for Governor Newsom’s leadership, but perhaps never more than during this public health crisis. Governor Newsom has been a lifelong pro-equality champion and we know he and his team are prioritizing our LGBTQ+ community — and the diverse communities to which we belong — and will identify and implement specific solutions to meet the unique challenges we face,” Equality California’s Zbur wrote in an email to the LA Blade. “We look forward to working closely with the governor in the coming weeks and months to provide health and healing for LGBTQ+ and all Californians.”

But while public acknowledgements were appreciated, they were brief and unsustained. LA County and LA City news conferences never even mentioned the LGBTQ community when other minority groups or issues about access to care were highlighted. The LA Blade called out the disparities on April 14 noting that for all the attention of a slew of populations at high risk for contagion, LGBTQs were not included, nor was data being collected.

The LA Blade was not alone. On April 21, GLMA Health Professionals Advancing LGBTQ Equality issued a second open letter signed by more than 170 organizations calling for action “to protect LGBTQ patients from discrimination and to include sexual orientation and gender identity in data collection efforts related to the pandemic,” as well as the economic harm to LGBTQ communities.

By May 12, Newsom told the LA Blade that he and Dr. Sonia Angell were working with Sen. Wiener on the data collection bill – but he did not commit to signing an emergency executive order to demand that local providers and county health departments start collecting LGBTQ data that is being lost with every passing minute.

“I don’t think that there are any disagreements that this needs to happen,” Wiener said during the Zoom news conference. “Obviously, the Governor and current Public Health are drinking water from a fire hose right now, and so we will continue to work with them to make sure that this happens and that it’s prioritized.”

However, Wiener added, “I would love for the Governor to issue an executive order immediately,” using the language in the bill.

And what of the most marginalized of the marginalized? Despite California officially a sanctuary state, the Disaster Relief Assistance for Immigrants (DRAI) program is not accessible for transgender, gender-nonconforming, and Intersex (TGI) people, many of whom are people of color, who have difficulty meeting criteria, according to Bamby Salcedo, founder of [email protected] Coalition.

“All organizations distributing money under DRAI are non-LGBTQ specific, which further impacts LGBTQ people, particularly TGI people, from accessing these funds. Communities such as sex workers, houseless people, those who have been recently released from immigration detention who do not have any type of documentation, and all others that live at the intersections of identifying as TGI will experience significant difficulties in accessing DRAI funds,” Salcedo said in a May 19 press release.

Despite decades of seeming progress, thousands of votes to advance democracy, millions contributed to fundraisers and political campaigns — LGBTQ people are once again fending for themselves and taking care of each other.

On May 18, Equality California launched a consumer-friendly website and help line “to connect LGBTQ+ Californians impacted by the COVID-19 (Coronavirus) crisis with LGBTQ+ friendly resources and support services,” says an EQCA press release. The civil rights organization is also working to expand the website “to include comprehensive directories of service providers in each of the state’s 53 counties and launch a series of free webinars for people facing unemployment or lost wages.”

“The COVID-19 LGBTQ+ Help Center and Help Line are roadmaps for members of our community to find the support they need from providers who know and care about LGBTQ+ people,” says Zbur. “We’re in this together. Whether you need to get tested, file for unemployment or a loan, find a foodbank or talk to a mental health professional, we’re here to help. Go to the website, call the phone number or send us an email and we’ll get you to the right place.”

The Equality California website, funded by grants from the AT&T Foundation and Sempra Energy Foundation, outlines how LGBTQ+ people “face higher rates of comorbidities such as HIV and cancer, are more likely to use tobacco products, are less likely to have health insurance and less likely to access care when they are sick out of fear of discrimination,” are overrepresented in the industries hit hardest by the economic downturn, with elders who already faced isolation before the COVID crisis.

The goal of the Help Center and Help Line is to help LGBTQ+ people navigate the social safety net to find resources they need.

 LGBTQ people might be dis-counted by governmental agencies but as in the early days of AIDS, LGBTQ people are starting to take care of each other. What the future looks like for the otherwise invisible devastated community remains to be seen.

LGBTQ+ Californians facing healthcare, financial, social challenges are encouraged to visit covid19.eqca.org or call (323) 448-0126 for assistance.

 

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AIDS and HIV

AIDS @40: Gay men terrified, stigmatized by mysterious new fatal disease

“If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth…”

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The photo of a dying David Kirby in Ohio in 1990 by photographer Therese Fare (Royalty Free LIFE.com)

By Karen Ocamb | LOS ANGELES – Before the CDC’s first report on AIDS, there was news from the New York Native,  a biweekly gay newspaper published in New York City from December 1980 until January 13, 1997. It was the only gay paper in the City during the early part of the AIDS epidemic and it pioneered reporting on AIDS.

On May 18, 1981, the newspaper’s medical writer Lawrence D. Mass wrote an article entitled “Disease Rumors Largely Unfounded,” based on information from the Centers for Disease Control and Prevention  scotching rumors of a “gay cancer.”

“Last week there were rumors that an exotic new disease had hit the gay community in New York. Here are the facts. From the New York City Department of Health, Dr. Steve Phillips explained that the rumors are for the most part unfounded. Each year, approximately 12 to 24 cases of infection with a protozoa-like organism, Pneumocystis carinii, are reported in New York City area. The organism is not exotic; in fact, it’s ubiquitous. But most of us have a natural or easily acquired immunity,” Mass wrote. He added: “Regarding the inference that a slew of recent victims have been gay men. . . . Of the 11 cases . . . only five or six have been gay.”

Eighteen days later, on June 5, 1981, the world turned when the CDC published an article by Dr. Michael Gottlieb in Morbidity and Mortality Weekly Report (MMWR) on AIDS symptoms, including cytomegalovirus (CMV) infection and candidal mucosal infection, found in five gay men in Los Angeles. By then, 250,000 Americans were already infected, according to later reports.

Gottlieb’s CDC report was picked up that same day by the Los Angeles Times, which published a story entitled ”Outbreaks of Pneumonia Among Gay Males Studied.” A slew of similar reports followed and on June 8 the CDC set up the Task Force on Kaposi’s Sarcoma and Opportunistic Infections to figure out how to identify and define cases for national surveillance. On July 3, the CDC published another MMWR on pneumocystis carinii pneumonia (PCP) and Kaposi’s Sarcoma (KS) among 26 identified gay men in California and New York. The New York Times’ story that day — “Rare Cancer Seen in 41 Homosexuals” – stamped the disease as the “gay cancer.” GRID (Gay-Related Immune Deficiency) came next. In the new Reagan/Bush Administration, dominated by homophobic evangelical advisors such as Gary Bauer, funding to investigate the new disease was scarce. 

Two years later, the New York Times finally put AIDS on the front page, below the fold, with a May 25,1983 headline that read: “HEALTH CHIEF CALLS AIDS BATTLE ‘NO. 1 PRIORITY.’”  By then 1,450 cases of AIDS had been reported, with 558 AIDS deaths in the United States; 71 percent of the cases were among gay and bisexual men; 17 percent were injection drug users; 5 percent were Haitian immigrants; 1 percent accounted for people with hemophilia; and 6 percent were unidentified. 

But Health and Human Services Assistant Secretary Dr. Edward N. Brandt Jr. told reporters that no supplemental budget request had been made to Congress. ”We have seen no evidence that [AIDS] is breaking out from the originally defined high-risk groups. I personally do not think there is any reason for panic among the general population,” he said.

Frontiers Magazine Cover Story by Larry Kramer (Photo Credit: Karen Ocamb)

Gays in denial seemed to accept feigned governmental concern. Others were deathly afraid. The HHS news conference was just 10 weeks – and 338 more cases – after the March 14 publication of playwright Larry Kramer’s infamous screed on the cover of the New York Native: “1,112 and Counting…”

“If this article doesn’t scare the shit out of you, we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get,” Kramer wrote. “I repeat: Our continued existence as gay men upon the face of this earth is at stake. Unless we fight for our lives, we shall die. In all the history of homosexuality we have never before been so close to death and extinction. Many of us are dying or already dead.”

Too many gay men were not scared shitless. When LA gay Frontiers News Magazine re-published Kramer’s article as their March 30 cover story, bar owners threw the publication out, lest it unnerve patrons. Meanwhile, gay men wasted away and died, often alone, sometimes stranded on a gurney in a hospital hallway; sometimes – if lucky – with family or friends crying at their bedside as in the intimate photo taken by Therese Frare as her friend AIDS activist David Kirby died.  

None of this was new or startling to Gottlieb or fellow AIDS researcher and co-author, Dr. Joel Weisman.   

Gay San Francisco Chronicle reporter Randy Shilts dubbed Weisman “the dean of Southern California gay doctors” in his AIDS opus, “And the Band Played On.” In 1978, as a general practitioner in a North Hollywood medical group, Weisman treated a number of patients with strange diseases, including a gay man in his 30s who presented with an old Mediterranean man’s cancer, Kaposi’s sarcoma.

In 1980, Weisman opened his own Sherman Oaks practice with Dr. Eugene Rogolsky and identified three seriously ill gay patients with strange fevers, dramatic weight loss from persistent diarrhea, odd rashes, and swollen lymph nodes, all seemingly related to their immune systems. He sent two of those patients to Gottlieb, a young UCLA Medical Center immunologist studying a gay male patient with pneumocystis pneumonia and other similar mysterious symptoms, including fungal infections and low white blood cell counts. 

“On top of these two cases,” Shilts wrote, “’another 20 men had appeared at Weisman’s office that year with strange abnormalities of their lymph nodes,’ the very condition that had triggered the spiral of ailments besetting Weisman and Rogolsky’s other two, very sick patients.”

LGBTQ activist David Mixner, former U.S. Ambassador Jim Hormel, Dr. Joel Weisman at an amfAR event (Photo by Karen Ocamb)

Weisman later recalled to the Washington Post that “what this represented was the tip of the iceberg. My sense was that these people were sick and we had a lot of people that were potentially right behind them.”

There were other missed signs, such as the CDC getting increasing requests for pentamidine, used to treat pneumocystis pneumonia. Gottlieb says that after his first report, the CDC’s Sandra Ford confirmed that she was sending increasing shipments of Pentamidine around the country. “But I’m not sure any infectious disease doctor there knew or investigated why they were seeing a run on pentamidine or asked what that meant,” Gottlieb told the Los Angeles Blade. Later pentamidine became “the second line therapy for pneumocystis,” after Bactrim. 

Pentamidine “caused kidney problems, so we didn’t like it. Eventually, aerosolized Pentamidine became one of the preventatives. We didn’t realize at first that pneumocystis would happen in multiple episodes. Like a patient would have pneumocystis, we treated, it would clear and they’d go home for a month and then they’d get it again. We didn’t learn until later that we had to do something to prevent recurrences. And that’s where aerosolized Pentamidine came in doing a monthly breathing treatment.” 

Though being gay was highlighted as a high-risk factor, race was largely left out of reports until 1983, despite the fact that Gottlieb’s fifth patient in his June 5, 1981 CDC article was Black. Gottlieb remembers him as a previously healthy 36-year-old gay Black balding man named Randy, referred to him in April by a West Side internist. 

But Randy’s race was not included in that first report, nor was the omission caught by the MMWR editors, probably, Gottlieb speculates, because they were focused on collecting disease data while they struggled  to save their dying patients. Gottlieb views the absence of race “as an omission and as an error” because demographic data is “good form as a doctor because it is important.” If race was not included in the MMWR, it was an unconscious omission.”

Karen Ocamb is the Director of Media Relations for Public Justice, a national nonprofit legal organization that advocates and litigates in the public interest.

The former News Editor of the Los Angeles Blade, Ocamb is a longtime chronicler of the lives of the LGBTQ community in Southern California. 

Editor’s note; The photo of a dying David Kirby in Ohio in 1990 by photographer Therese Fare was labeled by LIFE Magazine as the photo that changed the face of AIDS. To read the story and to see a gallery of addition photos visit here; (LINK)

This is Part 2 of a series on AIDS @40. Part 3 looks at Rep. Henry Waxman’s congressional hearing in LA and the creation of AIDS Project Los Angeles.

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AIDS and HIV

40 years later, activism, resilience, hope and remembrance

Speaker Pelosi & Congresswoman Lee laid a wreath at the Memorial, joined by San Francisco Mayor Breed & National AIDS Memorial CEO Cunningham

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Photo Credit: National AIDS Memorial

SAN FRANCISCO – Leaders of the AIDS movement came together in the National AIDS Memorial – the nation’s federally-designated memorial to AIDS – to mark forty years since the first cases of AIDS were reported in the United States.

Surrounded by the power of 40 blocks of the AIDS Memorial Quilt and the beauty of the 10-acre Memorial Grove where thousands of names lost to AIDS are engraved, the leaders paid tribute to the more than 700,000 lives lost, the survivors, and the heroes during the past four decades.  They also called for renewed action to provide care for long-term survivors, young people living with HIV today, and finding a cure that will finally end the epidemic.

“On this solemn day, forty years since the discovery of HIV/AIDS, Americans pay tribute to the hundreds of thousands of Americans we have lost to this vicious disease and draw strength from the more than one million courageous survivors living with HIV today,” said Speaker Nancy Pelosi.  “Moved by the beauty of the Grove and power of the Quilt, this morning we again renewed our vow to finally defeat the scourge of AIDS and bring hope and healing to all those affected.  Thanks to the tireless leadership of activists, survivors, scientists and the LGBTQ community, we will not relent until we banish HIV to the dustbin of history and achieve an AIDS-free generation.”

Speaker Pelosi and Congresswoman Barbara Lee laid a wreath at the Memorial, joined by San Francisco Mayor London Breed, former U.S. Ambassador James Hormel, and other AIDS leaders to honor loved ones lost with prayer and a moment of silence.  During a formal program that followed, two generations of advocates spoke of the activism, resilience, hope and remembrance that has defined the AIDS movement and helped shape other health and social justice movements during the past four decades.

The commemoration, which was streamed to a national audience, raised greater awareness about the plight of HIV/AIDS today, the progress made, and the continued fight against stigma and discrimination.  The observance also honored long-term survivors and served as a call to action to finally find a cure, four decades later.  HIV rates continue to rise in the U.S., with 1.2 million people living with HIV today, particularly impacting young people and communities of color.

“Forty years later we stand on the shoulders of trailblazers who understood that every person deserves empathy and care regardless of their health conditions or sexuality,” said California Governor Gavin Newsom in a video message.  “This current pandemic has shown us that health inequities still exist and it’s up to each and every one of us to continue the fight and to never, ever accept the status quo.”

Dr. Anthony Fauci, who introduced a tribute video to long-term survivors, said, “the accomplishments (over the past 40 years) are a direct result of the unique, long-standing partnerships that were forged and continue today between scientists, healthcare providers, industry and the HIV-affected community. The HIV/AIDS pandemic is not over. Ending the HIV pandemic is an achievable goal, one that will require that we collectively work together. As we honor the long-term HIV/AIDS survivors today and remember all that we’ve lost, we must rededicate our commitment and continue to advance our efforts to ending the HIV pandemic.”

Cleve Jones left rear watches as House Speaker Pelosi, SF Mayor London Breed, Congresswoman Barbara Lee and Chief Executive John Cunningham lay wreath at National AIDS Memorial on 40th Anniversary of AIDS (Photo Credit: National AIDS Memorial)

The day of public tributes and remembrance included a powerful 40 block outdoor public display of the AIDS Memorial Quilt that included more than 300 hand-sewn Quilt panels with nearly 1,200 names stitched into them. A group of young children whose parents serve on the Board of the National AIDS Memorial presented and helped unveil block 6,000of the Quilt to Quilt Co-Founders Cleve Jones and Gert McMullin, a reminder that four decades later, Quilt panels are still being sewn, to honor those lost to HIV/AIDS, then and now.

“These stories and this important observance highlight the issues our nation faced in the past year — a raging pandemic with hundreds of thousands of lives lost, social injustice, health inequity, stigma, bigotry and fear,” said National AIDS Memorial Chief Executive John Cunningham. “However, these are also the same issues faced throughout four decades of the AIDS pandemic. They are reasons why today, we have a National AIDS Memorial, and why, as a nation, we have much more work to do in the fight for a just future, where HIV/AIDS no longer exists.”

“The Quilt is a poignant and important reminder of why we must work with a sense of urgency to help end the epidemic,” said Daniel O’Day, Chairman and CEO of Gilead Sciences. “It will take the ongoing collaborative efforts of many groups working together, including activists, advocates, scientists and the LGBTQ+ community, to ensure that in another 40 years from now, the HIV epidemic is part of history. Gilead partners with allies like the National AIDS Memorial to remember those we’ve lost and raise greater awareness about the root causes driving the HIV epidemic, such as stigma, racism, homophobia and transphobia.”

Gilead Sciences is the presenting partner for the commemoration, joining together with Quest Diagnostics, Chevron, Vivent Health, Equality California and the San Francisco AIDS Foundation in supporting the day-long public observance.

Along with being invited to experience the 40 Quilt block display, the public was able to participate in the reading aloud the names of loved ones lost to AIDS, softly amplified in the Memorial. Throughout the day, visitors laid hundreds of roses in the Memorial Grove and  left personal tributes. Touching musical performances from the San Francisco Gay Men’s Chorus and the Messengers of Hope Gospel Choir, led by Earnest Larkins and featuring artists Ja Ronn and Flow, provided special inspirational moments.

A powerful spoken word performance, written and produced by Mary Bowman Arts in Activism awardee Ima Diawara and Pedro Zamora Young Leaders Scholar Antwan Matthews, highlighted the role of young people today in the fight against HIV/AIDS.  They expressed, “the time has come for us to elevate. The time has come for us to watch out for everybody on the block, even the people that do not own the real estate. it’s time to connect the wisdom of our elders with the wisdom of our youth and make life livable again, for all of us. It’s time for us to slow down and most importantly – it’s time to breathe.”

The 40th anniversary commemoration observance can be viewed in its entirety at www.aidsmemorial.org.   The National AIDS Memorial has also created a storytelling series, sharing a collection of heroes, survivors and lost loved ones to AIDS during the last four decades.

In West Hollywood, the Foundation for The AIDS Monument held a private groundbreaking event to commemorate the 40th Anniversary of the first CDC report related to AIDS. The event was held at the future site of STORIES: The AIDS Monument in West Hollywood Park. 

Overhead view artist’s rendering of future WeHo AIDS Monument
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AIDS and HIV

AIDS @40: Dr. Michael Gottlieb on the beginning of the AIDS Pandemic

Media painted the mysterious new diseases as Gay-Related Immunodeficiency Disease (GRID) or as it was more commonly called: the “gay plague.”

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Dr. Michael Gottlieb (Photo Credit: Elizabeth Nathane)

By Karen Ocamb | LOS ANGELES – In the beginning, the deaths and disappearances were isolated, frightening but shorn of consequence, like short, scattered tremors before a massive earthquake. Gay San Francisco Chronicle reporter Randy Shilts suggests in his extraordinary AIDS history “And the Band Played On” that the mysterious contagious disease that would claim the lives of millions silently exploded when sailors in ships from fifty-five nations came to New York Harbor on July 4, 1976 to join thousands celebrating America’s bicentennial.

Then death came home. Hugh Rice, director of the STD Clinic at the Los Angeles Gay and Lesbian Community Services Center during the height of the Disco era, recalled a very sick young, thin penniless gay man covered in purple lesions in 1979 who came in for his STD shot, disappeared, and died six weeks later in isolation at LA County Hospital. Matt Redman, the interior designer and disco fan who co-founded AIDS Project Los Angeles, suspected he had been infected with HIV in the late 1970s.

But it wasn’t until L.A.-based Dr. Michael Gottlieb and colleagues authored a report published June 5, 1981 in the Centers for Disease Control’s Morbidity and Mortality Weekly that identified the mysterious illnesses that would become known as AIDS.

At the time, Gottlieb was a 33 year-old assistant professor at the University of California Los Angeles (UCLA) Medical Center specializing in immunology who was fortuitously curious. He asked a postdoctoral fellow to go to the wards and ask interns and residents if there were any patients who had interesting immunologic conditions.  He found medical intern Robert Wolf, whose patient Michael had been admitted to the UCLA emergency room in January with fevers, some fungal infections on his skin, a 25 pound weight loss, and a mouth full of thrush, or candidiasis. Additionally, Gottlieb obtained a still experimental blood test looking at Michael’s T-cells that revealed that his CD4 (“helper cells”) “had essentially gone missing.

“This was a unique finding. We had never seen anything like this in any other immunologic or in any other medical condition,” Gottlieb tells the Los Angeles Blade.

Michael was discharged from the hospital but returned a week or two later with a lung infection.

“He came back to Robert Wolf. Ordinarily, you would not do a bronchoscopy for a community acquired pneumonia — ordinary bacterial pneumonia. But Robert astutely said, ‘you immunologists are telling us that this man is immune deficient. He is an immune-compromised host. We therefore should do a bronchoscopy  (an invasive procedure) to be sure he might have an opportunistic infection. And indeed, he had pneumocystis pneumonia. So that’s the story of patient number one,” says Gottlieb.

“Michael was a model. He had bleached hair. He looked like a rock star. A few months later, he developed a large lesion of Kaposi’s sarcoma on his chest. And that was a mystery also. He died within the first six months of his first emergency room admission,” Gottlieb says. Michael also “happened to be gay.”

Sexual orientation wasn’t a specific consideration until Gottlieb got a call from Dr. Peng Fan, who was the acting chief of Rheumatology at the Wadsworth VA in Los Angeles. He had been moonlighting at Riverside Hospital where Dr. Joel Weisman and Dr. Eugene Rogolsky had been admitting patients from their gay practice, two of whom had similar symptoms to Michael. They were transferred to the respiratory care unit at UCLA.

Pulmonary doctors immediately performed bronchoscopies “and low and behold, these two patients also had pneumocystis pneumonia. And now we had three gay men with pneumocystis pneumonia and absent CD four cells. That’s when we said, ‘oh, we have three gay men with pneumocystis pneumonia. That was the moment,” he said.

Gottlieb called the editor of the New England Journal of Medicine and asked for his advice on how to publish their findings there. “And he said, ‘well, have you spoken to CDC?’ As an immunologist, my orientation was not toward the CDC — infectious disease doctors are oriented toward the CDC. But I wasn’t an infectious disease doctor. So I said, ‘no, I haven’t.’ And he said, ‘well, maybe you ought to.’ So I called Wayne Shandera, the CDC person in Los Angeles assigned to the LA County Health Department as an epidemic intelligence service officer. I knew him from my time at Stanford because he was there as well. And I said, ‘Wayne, are you aware of anything unusual going on among gay men in Los Angeles or anywhere in the country?’ And there was an eerie silence on the other end of the phone. And he said, ‘no, but I’ll look into it.’ I told him, we think it might have something to do with the virus called CMV cytomegalovirus.’”

Shandera found some CMV growing from a patient sample from Santa Monica. “He went down to Santa Monica hospital and spoke to the patient and indeed, it was a gay man with pneumocystis, pneumonia and CMV as well. And so he unearthed a fourth patient,” says Gottlieb.

It was after Gottlieb’s fifth patient, Randy, referred to him by a doctor at Brotman Hospital, that he decided it was time to write up a report for the CDC, with a more explanatory article published later in the New England Journal.  He sat down at Shandera’s dining room table in the Fairfax district and typed up the report on an IBM Selectric typewriter, after which it was sent it off to CDC.

The editor of the CDC’s MMWR returned it with some modifications and corrections. “Interestingly, we called it ‘Pneumocystis Pneumonia Among Homosexual Men in Los Angeles.’ The CDC changed the title to ‘Pneumocystis pneumonia, Los Angeles.’”

Gottlieb doesn’t see anything nefarious in the change since the MMWR was focused on disease outbreaks like the salmonella outbreak in Idaho. Additionally, “if CDC had called it Pneumocystis Pneumonia Among Homosexual Men in Los Angeles,’ it might’ve even worked against us,” says Gottlieb, “although, ultimately, it got characterized as a gay disease anyway.”

The focus on gays may have been prompted by the article in the New York Times one month later, on July 3, 1981. The small story, “Rare Cancer Seen in 41 Homosexuals,” was published on page 20 and focused on Kaposi’s Sarcoma.

“The cause of the outbreak is unknown, and there is as yet no evidence of contagion. But the doctors who have made the diagnoses, mostly in New York City and the San Francisco Bay area, are alerting other physicians who treat large numbers of homosexual men to the problem in an effort to help identify more cases and to reduce the delay in offering chemotherapy treatment,” Lawrence K. Altman reported. “The [violet-colored] spots generally do not itch or cause other symptoms, often can be mistaken for bruises, sometimes appear as lumps and can turn brown after a period of time. The cancer often causes swollen lymph glands, and then kills by spreading throughout the body.”

The next day, July 4, 1981, the CDC reported 36 more cases of KS and PCP in New York City and California, linking the two coasts. The following month, the CDC reported 70 more cases of KS and PCP that included the first heterosexuals and the first female. By December, when Gottlieb’s New England Journal article was finally published, the CDC reported the first cases of intravenous-drug users with PCP. But also, by then, the media had painted the mysterious new diseases as Gay-Related Immunodeficiency Disease (GRID) or as it was more commonly called: the “gay plague.”

Editor’s Note:

This is Part One of a series looking at the 40th Anniversary of AIDS. Part Two looks at the panic, confusion and efforts to fight the mysterious disease in the face of intentional government neglect; Part Three looks at Gottlieb, Rock Hudson, Elizabeth Taylor and founding of amfAR; and Part Four covers Clinton to COVID. 

Karen Ocamb is the Director of Media Relations for Public Justice, a national nonprofit legal organization that advocates and litigates in the public interest.

The former News Editor of the Los Angeles Blade, Ocamb is a longtime chronicler of the lives of the LGBTQ community in Southern California. 

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