Connect with us

AIDS and HIV

Special Report: The arc of Michael Weinstein’s moral outrage from AIDS to homelessness

Published

on

AIDS Healthcare Foundation President Michael Weinstein speaks a press conference announcing a statewide ballot measure to repeal Costa-Hawkins at LA City Hall Plaza on Monday, April 23, 2018, in Los Angeles.(Carlos Delgado/AP Images for AIDS Healthcare Foundation)

California is caught in a conundrum. While House Speaker Nancy Pelosi and Rep. Adam Schiff are steadily guiding America through the divisive impeachment process, President Donald J. Trump seems more and more determined to punish the big blue state for its resistance to his draconian pronouncements.

On Nov. 3, for instance, Trump threatened to withhold federal funds for the devastating wildfires, tweeting that Gov. Gavin Newsom “has done a terrible job of forest management. I told him from the first day we met that he must ‘clean’ his forest floors regardless of what his bosses, the environmentalists, DEMAND of him.”

“No more,” if Newsom asks for funding, Trump tweeted, apparently unaware that the federal government controls forest land and the funding would help the displaced.

But there is an odd, unrecognized disconnect between concern for the burned-out fire victims and the larger issue of homelessness in cities such as San Francisco and San Diego and Los Angeles – 981 human beings died on the streets of LA County in 2018.

And the expectation of more turmoil looms large with Trump’s anticipated intervention into California affairs after the Nov. 15 firing of Matthew Doherty, the gay executive director of the U.S. Interagency Council on Homelessness.

According to the Los Angeles Times, Doherty is likely to be replaced by Robert Marbut, a Texas-based consultant who “has long encouraged elected officials to stop coddling people on the streets.” For instance, The Times reports, in 2012, Marbut “pushed the Florida city of Clearwater to stop ‘renegade food’ donations from churches and other charitable organizations. At the time, he characterized Clearwater as the second-most enabling city in America.”

Marbut’s philosophy, which broadly includes expanding police authority to crack down on the homeless for minor offenses, “is in line” with the Trump administration, The Times reports.

And what is that philosophy? “We have people living in our … best highways, our best streets, our best entrances to buildings … where people in those buildings pay tremendous taxes, where they went to those locations because of the prestige,” Trump said during a September LA site visit by administration officials. “And all of a sudden they have tents.”

Trump’s options are legally limited. But when has that stopped him?

If officials order sweeps of streets and homeless encampments, where would they go? Or might they be rounded up and placed into unspecified federal facilities?

But Newsom may now have a much-needed resource. On Dec. 4, he hired fired federal homeless expert Matthew Doherty to be his senior adviser, perhaps even figuring out how to pry loose millions of dollars in stalled funding for the state with half the nation’s unsheltered homeless population.

Doherty has a daunting job. The Los Angeles Homeless Services Authority estimates approximately 50,000 to 60,000 people were homeless in LA on any given night in 2019, more than 44,000 on the streets. About 34% are Black, hugely disproportionate to their 8% of the population; 31% are females; and minors through age 24 make up 8,915 of the county’s homeless population, up from 8,072 in 2018.

The jump comes “despite over $619 million in spending on the [homeless] problem in the region over the past year,” AIDS Healthcare Foundation co-founder and President Michael Weinstein said in a June 2 statement.

The LAHSA did not post LGBTQ-specific statistics but last June, when out City Controller Ron Galperin introduced an online map to help link homeless and at-risk LGBTQ youth to services, he noted that up to 40 percent of homeless youth identify as LGBTQ.

“The homelessness crisis gripping our region spans the spectrum of age, gender, ethnicity and sexual orientation and expression, but is particularly difficult for LGBTQ youth,” Galperin said.

Within this context, a majority of voters recognize homelessness as a crisis — exacerbated by a paucity of affordable housing, escalating rents, retaliatory evictions and gentrification. But, The Times notes, “there is some appetite among L.A. County residents to have law enforcement be more involved.

To Weinstein, the humanitarian calamity on the streets and the criminalization of homelessness is a moral outrage.

“AIDS Healthcare Foundation was born of moral outrage over the mistreatment of people with AIDS. We began as a hospice provider when people were dying in the hallways of the county hospital,” Weinstein says. “Today’s housing crisis is a similar crisis of indifference to suffering. Our patients and employees are feeling the devastating impact of skyrocketing rents. AHF has jumped into the breach with advocacy and by directly creating affordable housing units.”

In 2017, AHF created the Healthy Housing Foundation by AHF,  which bought and renovated SROs in Hollywood and Downtown LA. AHF has also sued to prevent destruction of available housing units by developers proposing luxury housing with some affordable units set aside.

Weinstein, whose first apartment at 19 was in West Lake for $100 a month, believes the supposed “trickle down” of luxury complexes actually makes surrounding housing units too expensive for someone living on minimum wage.

Watching this, Weinstein turned to his board of directors and his management team and asked: “What can we do to not just say how bad it is, but create a solution?”

“And so we went out in the marketplace and we bought our first single room occupancy hotel that was two thirds vacant and we rehabilitated it to put people in there,” Weinstein told the Los Angeles Blade. “And now we have seven of them and we have almost 800 rooms. The average cost is $100,000, including the renovation — whereas the city is spending $500,000. And the first units from Proposition HHH, which was the city initiative around building affordable housing, have yet to come online, not one single unit.

“It’s an urgency to meet human need,” he continues. “So not only are we criticizing and advocating, we’re also providing a solution. And I’ve committed to 10,000 rooms over the next five years,” including building from scratch. “We’ve amassed three lots and we will eventually build a project that hopefully will be 800 units there. So we’re very, very serious about creating solutions.”

Weinstein remembers the 1986 fight with his best friend Chris Brownlie against Lyndon LaRouche’s Prop 64 initiative to quarantine people with HIV/AIDS. After the measure failed, they asked what they should do next.

Seeing poor gay men evicted from their apartments, dying homeless and loveless on the streets or in the halls of County General Hospital or the overcrowded 5P21, they founded the AIDS Hospice Foundation and opened the Chris Brownlie Hospice to give them death with a modicum of dignity.

“As human beings, I think one of the things that differentiates us from other animals is that we take care of our own. And in this environment, in the AIDS environment, taking care of our own sometimes means providing people with AIDS with a clean, warm place to live out the last days of their life and a way to die without the distractions of homelessness or freaked out relatives or any of those things,” Brownlie says in the June 2017 documentary “Keeping The Promise,” narrated by Meryl Streep.

In the miracle three-drug cocktail came out in 1996, Weinstein decided to give the medication to AHF clients in their clinics and in their Chris Brownlie and Carl Bean hospices. But the government was not paying reimbursements for the medications in those days, so the cost came out of AIDS organization’s own pocket — bringing AHF to the brink of bankruptcy and provoking a near coup to oust the co-founder.

“I wouldn’t have done anything different because it was really a moral imperative. I mean, you couldn’t let people die who you knew could be saved,” Weinstein said in the documentary. “What happened was virtually all of the patients got better within a month or two. Before that, hardly anybody left the houses. Most people – they came there and that’s where they died. But all of sudden people were leaving and going back to their lives. And that was just miraculous.”

Thousands did not live to see the miracle, including Chris Brownlie. Nov. 29 was the 30th anniversary of his death at the AIDS hospice that bore his name.

“Not only is homelessness and housing affordability akin to the moral outrage of AIDS in the ’80s, but AIDS seemed like an insoluble problem, right? It just seemed like an overwhelming thing that you couldn’t get your arms around. And AHF and others who worked on this issue made it a solvable problem. Same thing can and should happen with housing affordability.”

On Nov. 30, AHF announced it would appeal a dismissed lawsuit filed last August in Superior Court against the City of Los Angeles, the City Council and four Hollywood developers. The lawsuit sought to enforce the federal Fair Housing Act and California’s Fair Employment and Housing Act regarding developments that AHF asserts were “approved without providing adequate measures to ensure that the projects would not displace protected minorities.”

In addition to the gentrification of minority neighborhoods, AHF is tackling the issue of escalating rents. On Dec. 5, AHF announced it has secured nearly one million signatures — far more than the required 623,212 voter signatures needed — to qualify the Rental Affordability Act for placement on statewide ballots for November 2020.

The RAA is sponsored by Housing Is A Human Right, AHF’s housing advocacy division. It is endorsed by Sen. Bernie Sanders, former Housing and Urban Development Secretary Julian Castro, Rep. Maxine Waters, and civil rights icon Dolores Huerta, among others.

If passed, the initiative would remove restrictions in state law to give cities and counties the ability to devise rent control policies that limit how much rents can increase each year.

“Seventy-five percent of Californians hold a positive to very positive view of rent control,” Weinstein said at a Dec. 5 news conference, according to a press release. “The housing affordability and homelessness crises are the most pressing social justice and public health emergencies in our time, especially in Southern California. We must take action to stop it now. To that end, we intend to bring the issue directly to California voters next November.”

Last year, a similar measure, Prop 10, was defeated. The effort cost $96.66 million – with Coalition for Affordable Housing raising $25.30 million (AHF contributed $22.52 million) and the No on Prop 10 real estate PACs raising $71.37 million.

Big PhRMA (Pharmaceutical Research and Manufacturers Association) also chipped in $500,000 to the No on 10 campaign. When the medical news organization STAT asked why, a PhRMA spokesperson claimed they had over 900,000 people living and working in California (thus 2.3% of the state population) and they were concerned that the measure “…could make housing harder to find,” according to a Sept. 20, 2018 report on Business Wire.

Weinstein has a long history of tangling with Big PhRMA, from the late 1980s when AIDS Hospice Foundation and ACT UP protested drug companies profiteering from outrageous drug pricing, to his lawsuits challenging Gilead Sciences drug patents making “untold billions off of tenofovir in its various treatment combinations since its introduction in 2001.” AHF’s lawsuits have paved the way for hundreds of other lawsuits, including a recent patent infringement case by the federal government involving Truvada.

“A rift between the Centers for Disease Control and Prevention and pharmaceutical giant Gilead Sciences ruptured further Wednesday when the Trump administration sued Gilead in U.S. District Court, asserting that Gilead made billions of dollars on HIV prevention therapy while repeatedly ignoring government patents,” the Washington Post reported Nov. 7.

 

Weinstein is also a favorite target of critics who tend to repeat the same debunked claims, even into the pages of the New York Times.

“To his many critics in AIDS activism, Weinstein is the Koch brothers of public health,” Christopher Glazek wrote in a New York Times Magazine feature story, citing a slew of old allegations, including “giving kickbacks to patients, overbilling government insurers.”

“AHF has always been and remains clean as a whistle and at the same time, because our advocacy and our outspoken voice, we are a huge target,” Weinstein said. “Plus, oppression sickness that’s still very alive and kicking in the LGBT community does not allow anyone to rise to a level of leadership without being subjected to this kind of malicious attack.”

Weinstein encourages simple fact checking. For instance, in the so-called “Whistleblower Kickback case” in Florida, the original judge validated the AHF clinic’s business model of giving bonuses to employees to get people tested and using incentives and gift cards for clients who returned for a second appointment, now a more common practice in public health. After the initial lawsuit by former employees failed, they went to both the U.S. Department of Justice and the state government alleging Medicare fraud – but both declined to pursue the case.

In August 2018, the 11th Circuit Court of Appeals also ruled in AHF’s favor.

“They lost, they appealed, they lost again. And not only did the court rule in our favor, but the [Florida] government intervened  to say that what we were doing is not only OK, but what they wanted us to do, which is to put everything under the same roof,” Weinstein said. Not only did AHF win the case, “but they’re having to pay us back the legal costs.”

In another Florida lawsuit, in November 2018, a judge ruled in AHF’s favor in a Medicaid contract case that threatened to disrupt care for nearly 2,000 HIV patients.

Regarding the criticism around LA funding, Weinstein said, “there’s been a lot of prejudice against us because of the advocacy, which we have fought and won in 90+ percent of the cases.”

In one instance, LA County strenuously asserted that AHF over billed for the services for which they were contracted.

“They spent $3 million fighting us on that and then they wound up settling without any claim that we had done anything wrong,” Weinstein said.

Weinstein has been excoriated for calling PrEP a “party drug,” which was translated into his opposition to the drug. In fact, AHF dispenses PrEP after a medical checkup to ensure the client should take it and is advised about side-effects and accompanying condom use.

“It’s a mischaracterization to say that we were opposed to PrEP,” Weinstein told the Los Angeles Blade. “We said that we did not believe it would be a successful public health strategy. And the jury is in on that, right? The people who are taking it are not the people who need it most. They’re older, white, middle-class men. The infection rate has not gone down. The STD rates have gone up, the condom culture has been damaged. We went from a variety of different prevention approaches to basically all PrEP and that has not been successful.”

Weinstein said the reason PrEP has not caught on, “despite the tens of billions of dollars that’s been invested in it, is because it’s very difficult to get people to take a drug for a disease they don’t have. It’s hard enough to get people to take a drug for disease they do have.

“One size does not fit all,” he continued. “That’s what we said from the very beginning — that PrEP would help individuals who were certain not to use condoms but that it would not be effective as an overall public health strategy. It’s been seven and a half years since the approval and we have not seen any significant change in the situation,” especially in reaching people of color.

To make condom use more sexy, for International Condom Day, AHF premiered a funny, lively parody of Cardi B with “Wrap It Like That” that has been viewed almost 859,000 times.

“Part of what has made us unpopular in certain quarters is that from day one we have had an ironclad commitment to serving people of color communities,” Weinstein said. “You still have a tremendous amount of segregation and discrimination in the LGBT community to this day. Whether you talk about Minority AIDS Project or In The Meantime, or  Bienestar and if you look at the composition of our board of directors, our senior management, our global leadership — I’ll say this flat out — there is no other organization working in this space that is as diverse as AHF. And we’ve put our money where our mouth is, in terms of where we located our facilities, organizations that we financially support, and alliances that we’ve built.”

AHF’s Michael Weinstein with In The Meantime’s Jeffrey King (Photo by Karen Ocamb)

Impulse Group/ Buenos Aires (Photo courtesy AHF)

“You pay a heavy price for being ahead of your time, being in the vanguard. And I’m not saying that to brag. I mean that’s simply true. Over and over and over again,” Weinstein said.

The most recent flareup with AHF comes from popular, legislatively-prolific out State Sen. Scott Wiener (D – San Francisco) who apparently blames AHF’s strong opposition to SB 50, the transit housing bill he co-authored with State Sen. Ben Hueso (D – San Diego), for killing the bill this year.

“Senator Scott Wiener, SB 50’s author, recently wrote in an email that “AHF and Weinstein are now effectively California’s NIMBY-In-Chief,” the Bay City Beacon wrote in a highly critical story.

However, there was much opposition to SB 50 in its current form. In a statement posted on his website May 16, Senate Appropriations Committee Chair Anthony Portantino (D – La Canada Flintridge) explained why he turned SB 50 into a two-year bill.

“SB 50 is a well-intentioned effort to help solve our state’s housing crisis and it highlights two valid ways to affect land use decisions across the state:  providing incentives or legislating mandates. My preference has always fallen on the side of incentives for local governments to accomplish goals.  There were legitimate concerns expressed from both large and small cities about the scope of SB 50 as it pertained to bus corridors, historic preservation, the definition of ‘jobs rich’ neighborhoods and whether it would increase gentrification and discourage light rail expansion as unintended consequences; all of which justified the pause established today by the committee.  My colleague from San Francisco is one of the smartest and most earnest legislators in the capitol. He cares deeply about the housing crisis and I expect him to continue to pursue his goals.  Hopefully we provided the opportunity to broaden the conversation, which can result in a more targeted legislative effort.”

In fact, according to a May 8 Business Wire press release, the League of California Cities cited 35 municipalities that opposed SB 50: Burlingame, Beverly Hills, Brentwood, Chino Hills, Cupertino, Diamond Bar, Downey, Fremont, Glendale, Glendora, Hermosa Beach, La Mirada, Lafayette, Laguna Niguel, Lakewood, Long Beach, Los Angeles, Manhattan Beach, Mountain View, Novato, Paramount, Pasadena, Pinole, Palo Alto, Rancho Cucamonga, Rancho Palos Verdes, Redondo Beach, Santa Clarita, San Francisco, San Mateo, Solana Beach, Sunnyvale, Vista, West Covina, and West Hollywood.

Nonetheless, efforts were made to disparage AHF, including a news conference taking AHF to task for using a quote by and image of gay icon James Baldwin in an ad.

“As someone whose community has been so deeply impacted by HIV, I’m deeply offended by how they misuse HIV healthcare dollars,” Wiener, who is gay, recently said of AHF’s anti-SB 50 campaign.

Hueso sent a letter to Attorney General Xavier Becerra requesting an investigation of AHF over alleged misuse of federal 340B funds, Politico reported last August.

“This action is payback from Scott Wiener for our successful opposition to SB 50,” Weinstein tells the Los Angeles Blade. “These charges were made before and nothing came of it. AHF is extensively audited. Politico didn’t bother to say that 96% of our funding goes to patient care. And Senator Hueso’s own letter says that there are no restrictions on 340B funds, which come 100% from drug companies. Lastly, Politico didn’t even bother to speak to me for its article.”

Becerra’s office does not comment on the status of investigations or litigation, but as of Dec. 4 AHF has heard nothing from either from Becerra or the federal Department of Justice. Meanwhile, AHF says Wiener and Hueso are beholding to real estate developers by taking their campaign contributions.

Weinstein pointed out that most of the stories critical of him and AHF “give such short shrift to our humanitarian efforts,” often in “very extremely dangerous and difficult circumstances across the world — not to mention our work on Ebola and our disaster relief where we air-lifted into the Bahamas and into Puerto Rico and Haiti before the U.S. government could get there.”

Since 1987, AHF has developed funding streams through a network of pharmacies, thrift stores, healthcare contracts and strategic partnerships. Today, AHF’s budget is $1.6 billion – with 96% of the funding going to patient care; with 6,500 employees caring for 1,332,868 patients in 43 countries, including 664 free global treatment clinics. AHF also operates in 38 of the 48 US counties the Trump administration wants targeted for HIV prevention, care and treatment.

“You can talk all day long about whatever your political issues are with AHF. But the bottom line is that 1.3 million people are entrusting us with their care,” Weinstein said.

“We started out as a tiny grassroots organization. Our budget in the first year was $50,000, approximately. We were a fraction of the size of APLA. And now we’re a hundred times their size,” Weinstein said. “It’s a tremendous amount of hard work, dedication, and most of all really having our finger on the pulse of what the needs were. And now we’re taking on homelessness and affordability and housing and we’re taking on trying to build a sustainable public health structure in the world. None of the snark, none of the attacks, and none of these so-called legal arguments have slowed us down one iota.”

In fact, AHF’s Healthy Housing Foundation in LA is buoyed by the help they’ve been able to give people such as Herbert Butler, an 88-year-old homeless veteran of the Korean War who has been on the Hollywood streets for 20 years.

“Butler, an avid amateur pianist, long resisted going to shelters (for myriad reasons known best to him), preferring his life on the street,” AHF’s Ged Kenslea told the Los Angeles Blade. “However, one ritual remains sacred to him: several times a week he travels from Hollywood to Union Station to wait his turn for the chance to play — and entertain harried commuters — for 20 minutes or so on the community piano in the station’s waiting room.”

Nicole Farley, from JWCH Wesley Health Care Center, worked to earn Butler’s trust and bonded with him over his deep admiration for her grandfather, the famous alto sax jazz musician Captain John Handy. In October, Farley connected Butler to AHF’s Healthy Housing Foundation and they secured him a spot in the Baltimore Hotel, a 1910 SRO hotel on Skid Row in downtown LA that AHF has repurposed for homeless and extremely low-income housing.

Herbert Butler (Photos courtesy AHF)

“Inspired by Mr. Butler’s story, his service to our country and his passion for music,” Kenslea said,  “AHF recently obtained a secondhand mini baby grand piano and placed it in the lobby of AHF’s King Edward Hotel, directly across the street from the Baltimore. Now, Mr. Butler, and other musically inclined residents of AHF’s residences, can play to their hearts’ content.”

“The biggest issue of all the issues that we’re facing is income and inequality,” says Weinstein. “Whether it’s drug companies that price their drugs out of the reach of people, not only here, but around the world. Or whether it’s the fact that, that the system as it exists now, cannot put a roof over everybody’s head. I do a lot of international travel and I go to very poor places. And there’s no place that I have been where there are as many people sleeping on the street as there are in Los Angeles. There are people in huts, there are people in shacks with corrugated roofs, there are some terrible living conditions that I see. But a person who, lying on the sidewalk, the sidewalk is home for tens of thousands of people. I’ve not seen that anywhere that I’ve traveled. If that is not a moral outrage, then I don’t know what it is.”

“Homelessness is the worst wildfire California has ever seen,” says a recent AHF video on the issue of rent control.

AHF President Michael Weinstein and husband Kevin Tran Nguyen (Photo by Karen Ocamb)

“The bottom line is love,” Weinstein tells the Los Angeles Blade. “The bottom line is love of humanity. The bottom line is love of sisters and brothers. And you know, sometimes you really need to fight like hell for the people and the things you love.”

 

Continue Reading
Advertisement

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…”

Published

on

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.

Continue Reading

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

Published

on

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
Continue Reading

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.”

Published

on

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. 

Continue Reading
Advertisement
Advertisement

Follow Us @LosAngelesBlade

Sign Up for Blade eBlasts

Popular