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Seeking truth in the war on the coronavirus

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Jewel Thais-Williams said she’d call back. She was on the other line and had been inundated with calls asking how she was doing after eye surgery. Three hours later, the almost 81-year-old LGBTQ icon was pumped, angry, going on and on about conspiracy theories – how “The Eyes of Darkness” had predicted the coronavirus in 1981 and how Donald Trump was using the virus or COVID-19 to spread fear and hate for his own political gain, just like in “The 9th Wave,” a book she read as a 12-year-old that still haunted her. The book is about political machinations that “frighten old people about having what they have now taken away that they vote for this guy.”

And while one eye was patched from surgery that day, the other one was fixed on cable news as President Trump declared a state of emergency.

“How do we really know what’s going on without having tests to let us know?” Jewel asked insistently. And without widespread testing to know if the virus is real and who’s got it where and telling everyone to be afraid and shelter in place and not to have gatherings of more than 10 people, she added, “there are no more protests and law enforcement can just arrest people on the spot.”

“This is happening to keep Trump in office,” Jewel said flatly. “Follow the money. We could have had pop up clinics by now. We could have converted Mobile HIV Testing vans to do coronavirus testing. But instead, Trump meets with bankers and other money men. What’s the alternative motive here?”

It was Tuesday night and former Vice President Joe Biden was cruising to victory in three more Democratic primary states. Jewel was watching that, too. She’d switched from Elizabeth Warren to Michael Bloomberg, then back to Warren but was now fully onboard with Biden.

“He’s the same decent, honest guy who looked me in the eye when we were talking,” she says, recalling their meeting at a White House Pride party. “Eyes are the window of the soul and that was the biggest thing between me and Joe – the dude is real. That’s what I see.”

The phone call ended agreeing to disagree about conspiracy theories. But the next day, March 18, Trump took to the White House podium and insisted that the virus came from China, so it is “the Chinese virus,” a term he declared is “not racist at all.

Trump – a man who used “bone spurs” as an excuse to avoid service during the Vietnam War – also declared himself a “wartime president” in this war on the coronavirus, saying he was invoking the Defense Production Act “in case we need it.”

The Korean War-era law enable presidents “to take extraordinary action to force American industry to ramp up production of equipment needed for national security,” according to Time.com.

Knowing Trump listens to right-wing conspiracy theorists,  it looks like Jewel Thais-Williams’ network of sources may not have been that far off. The plot of “Eyes of the Darkness” involves a Chinese military lab that manufactures a deadly virus in Wuhan city. Snopes confirmed the book passage but debunked the prediction of the virus.

Eerily, however, this theory feels like it could hatch into something akin to the fabricated “weapons of mass destruction” fiction that had America launch a first “Shock and Awe” strike against a foreign country and start the war against Iraq. In fact, Axios reported March 21, that U.S.-China tensions hit a dangerous new high, worrying many.

Meanwhile, a website called “Stop AAPI Hate” has been launched in the Bay Area to document hate crimes against Asians Americans and Pacific Islanders, including a Los Angeles boy attacked at his middle school.  “We are currently providing support to a child who had to go to the emergency room after he was assaulted and accused by bullies of having the coronavirus, and so that tells us we may need to work with schools to address shunning and school bullying but we need to know how widespread it is,” said Manjusha Kulkarni, executive director of A3PICON, told NBC/Bay Area.

The bottom line: with a president who consistently, boldly and unabashedly lies for his own self-aggrandizement, how is the American public supposed to believe anything Trump says – about anything, let alone a very real new virus that is claiming thousands of lives across the globe?

All the respected experts say “test, test, test” to find out where the virus is being spread. But the administration has failed on every front: containment is no longer applicable and mitigation is voluntary, though with Gov. Newsom’s official Order to stay home, law enforcement will now be looking for violators, according to the LA County Emergency Operations – but what happens next is unclear.

And yet, the American people themselves seem to be taking on the historic and mighty task bungled by the Trump administration, helping each other and helping non-profits help others, as well, such as volunteers showing up for Project Angel Food to prepare and deliver food to homebound people with life-threatening illnesses.

“Charity is often a vital first line of defense or the critical resource of last resort for families that struggle with food insecurity in America.  It is, however, inadequate to meet the daily needs of 40 million Americans who are food insecure,” Abby Leibman CEO of MAZON: A Jewish Response to Hunger, tells the Los Angeles Blade.

“The Federal Government has the most crucial role in ensuring that people have access to adequate resources to feed themselves and their families through its nutrition safety net programs, particularly SNAP. Even at the best of times those resources are stretched thin and in this time of crisis, they are getting further stretched just as they become more vital.  The current Administration has done everything in its power to DECREASE access to these benefits, in a shameful response to people who have been struggling and those made newly food insecure by the pandemic,” she says.

Empty grocery shelves (Photo by Karen Ocamb)

“Those who are more vulnerable, face even more barriers, particularly seniors, including LGBT seniors which is why MAZON funded a soon-to-be-released study with the Williams Institute to look into the matter of LGBT senior food insecurity,” Liebman says.  “For them, issues of stigma, lack of family support, lack of access to traditional employment and its benefits, drive far too many into poverty as they age.  Our Federal Government can do better, it must do better.”

Food and hunger are issues everywhere. Bamby Salcedo, founder and director of [email protected] Coalition, says she is still continuing the organization’s lunch program, but limiting other services.

TruEvolution CEO Gabriel Maldonado being honored by Assemblymember Cervantes and the California LGBT Legislative Caucus last June in Sacramento. (Photo via Maldonado’s Facebook page)

TruEvolution CEO Gabriel Maldonado says his organization has been hit hard.

“TruEvolution has canceled our all of our community and educational events for the next until April 15, 2020. We are going to re-evaluate any events taking place subsequently at that time. In addition, our strongest HIV testing partner, UC Riverside, has either postponed or canceled all campus events, including our HIV testing events,” he tells the Los Angeles Blade.

“We are very much concerned about the impact that this will have on our organization’s ability to provide services, and outreach to our clients,” Maldonado says. “Many of our clients rely on our storefront services for food, housing, and support groups. We are suspending our drop-in hours and will be providing virtual or appointment-only services. Last night, we had a client contact us at 2:00 AM who lost his job and was sleeping in his car as of this week. Much of the paperwork must be done and completed in-person and we also need to meet with him to successful link him into emergency housing. Business must continue. Clients have the same issues before the pandemic, and both social and medical services are even more critical now than before.”

Maldonado says the organization will be offering “walk-up services” during their support group hours and will be providing our clients with a hot meal, water, sanitizer, county resources and FAQs on COVID-19.

Still, confusion reigns.

“This is serious. We have an emergency,” trusted Rep. Maxine Waters told MSNBC. “We have a real serious problem with testing. First of all, we have so many people who need testing who can’t get testing.”

Waters, a political powerhouse and the first woman and first African-American Chair of the House Financial Services Committee, is a longtime LGBTQ ally, having been in Los Angeles and elected to Congress during the Second Wave of AIDS. The story she told MSNBC is akin to thousands of other stories of people or friends of people who have been sick or frightened and looking for help, found none. Her friend, at least, has powerful friends.

“I have a friend that I happened to call today,” she told MSNBC on March 13, “and she had gone to UCLA after having real symptoms. They gave her a test for influenza and then told her she didn’t have influenza. And she said, ‘What about the coronavirus tests?’ And they said they were not giving that test. She called a friend who has great influence and they told her to stay there, don’t leave,” Waters said.

“And this friend with great influence at UCLA forced them to give her the test. So, they gave her the test, but they couldn’t give her the results in any short period of time. So, they sent her home,” Waters continued.

“When I talked to her at home, she was in great pain, had terrific headaches, coughing and a fever. And she was waiting on the results from the test that they had been forced to give her at UCLA.”

Waters paused. “I don’t know what’s happening. I’ve got to check back to see if she ever got the results of that test,” she said. “But I do know this: she and her daughter are basically alone and I had to inquire about – did she have food in the house, or what was going on? She said someone was going to bring some food and leave it on the doorstep.”

This, Waters says, “is a situation, I think, that is typical of what is happening in this country. Unfortunately, we were not prepared. The greatest country in the world was not prepared for this pandemic.”

Not unexpectedly, having dealt directly with the Trump administration, Waters knows many people do not trust Trump.

“One of the problems that we have is that there’s not a lot of trust from the average American in the president of the United States,” she says. “Unfortunately, he has been documented to have lied so many times, to distort, to change the story.”

But lack of credible leadership results in real harm to real people in real time – and that time is now.

“I am worried about people with low income and the minimum wages that are going to be stopped from work. They’re not going to have jobs. They’re going to be fired. The business is going to close down, and they don’t have anywhere to go,” Waters says. “So, we’ve got to make sure that for those who do have unemployment insurance, that we expand that and that is what is being looked at….We’ve got to make sure that we give additional support to Medicaid and that was being proposed….So, we’ve got a lot of work to do.”

Another political powerhouse who is also a strong friend to the LGBTQ community is Rep. Adam Schiff, who represents Burbank to West Hollywood. As the leader of the House Impeachment committee, he has been getting very real death threats. Now he is facing another threat and is practicing the recommended “self-isolation” at home with his family after his lead investigator, counselor Daniel Goldman, recently tested positive for the coronavirus.

“I would be taking precautions anyway to limit my social interactions,” Schiff tells the Los Angeles Blade in a phone interview. “First, we began canceling large events, and then we began canceling smaller events, doing constituent meetings by phone instead of in-person. I scaled way back on my travel plans, and I think we had to cancel all of my constituent meetings before the situation with Dan, but I’m taking some additional precautions,” he says, adding that Goldman was likely infected after he left Schiff’s office in early March. “But out of an abundance of caution, we’re still being careful.”

At a tele-townhall on March 19, Schiff said he completed his self-isolation and has been working on getting relief for freelancers in the entertainment industry, in particular. He spent most of the call discussing testing, financial relief for unemployed and small business owners, including the prospect of forgivable loans.

“We’re going to be looking at what’s necessary so that people who cannot make their rent payment or their mortgage payments or have some kind of suspension – and also to make sure that none of this effects people’s credit in the long run because this is a pandemic that’s effecting us all, no matter how good someone’s planning may have been. We’re all in this boat together.” Schiff said.

“The main point in the stay home requirement is not so much because food is somehow limited or we need to ration but rather we want to make sure that people don’t unnecessarily expose others to the virus. The whole point there – and this gets to the expression these days about ‘flattening the curve’ – if we can slow down the progress of the virus, it means that our hospitals will be able to deal with the intake, that they can get through the current shortages of protective gear, that they can get through the current lack of sufficient numbers of ventilators. If, on the other hand, we don’t take these rather extraordinary steps, then we’re going to have an explosion of cases, our healthcare system is going to be inundated, there won’t be enough ventilators, for example, to go around, and there will be an unnecessary loss of life. And that’s really the point of social distancing, the point of staying home.”

Schiff will be holding another tele-townhall on March 26, details of which will be posted on his website and Facebook page.

As have many others, Schiff has noted the oddity of having Trump onstage with Vice President Mike Pence [who finally submitted to testing with his wife on March 21 after a staffer tested positive] clumped together with his coronavirus team for photos and television – and not exhibiting the social distancing of three-to-six feet they insist on for others.

“It is incongruous to hear the president talk about social distancing while he’s not social distancing. And people are standing around him and he’s leaning over to whisper to Mike Pence,” Schiff tells the Los Angeles Blade.

“There’s kind of a conflicting message, especially with what we’re saying. But it is certainly important to note that the degree that we are able to take precautions now and do sensible social distancing will significantly flatten the curve at which this virus spreads and help protect those with compromised health, or seniors.”

The significance of social distancing, especially with news that the infection can be spread “silently” by people who are asymptomatic, is that individuals must accept responsibility for themselves and prevent serious health consequences that could end up costing a lot of people their lives.

“So here, the public is really empowered to do something major to affect the severity of this crisis by taking some important steps that are going to be difficult for people,” he says. “We’re a social creature and we like going out to restaurants, and we like joining in public places and now we’ve been asked to move away for a period of time. So, things are moving very, very quickly, and steps that we thought were aggressive two weeks ago now, it’s been way too… It’s substantial. And who knows where it will be tomorrow.”

Schiff also took on some more precise question from the Los Angeles Blade on behalf of community agencies regarding the lack of testing, who’s paying for what and housing issues.

“There’s no question that the failure to test early and often has been the single biggest failure in the Administration’s response to this virus, and it’s inexcusable because we knew about it for weeks ahead of time,” Schiff says. “When we emerge from this crisis, the disastrous lack of any testing of patients in the first weeks of this outbreak will need to be the topic of major congressional oversight. Testing is becoming more available, though not fast enough, and it’s currently reserved for patients that are symptomatic and/or were exposed to an individual that has tested positive for the coronavirus.

“As of March 17, the testing capacity in California was 8,000 per day,” he says, noting the passage of the Families First Coronavirus Response Act, which Trump signed into law March 19. The law makes testing “free for all Americans — and we will continue pushing to increase our testing capacity by getting more tests into production so they will be more widely available. Americans have been fighting blind because of the lack of tests, but I’m hoping this changes immediately.”

Darrel Cummings, Chief of Staff at the LA LGBT Center, asked questions via the Los Angeles Blade before Gov. Newsom issued his Stay at Home Order on March 19.

Cummings notes “community health centers have a role to play with both their current, registered clients and among the communities where there are located.  To effectuate ‘social distancing’ within clinical settings, telemedicine helps but is not always a billable service.  Will you advocate with HRSA so that telemedicine can be billed the same as an in-person visit? The same question applies to mental health and psychiatry visits.”

“Yes,” Schiff says. “Telemedicine has an increased role to play as we try to minimize visits to clinics or hospitals, especially for at-risk patients. The emergency appropriations legislation Congress passed two weeks ago lowered the barriers for telemedicine reimbursement for Medicare patients, which is a good start, but we need to do more. California has asked the federal government for a waiver that would allow reimbursement to community health clinics for telemedicine visits at the same rates as in-person visits, and that is currently pending,” he adds. “I fully support moving as much diagnosis and treatment as we can online right now, because it’s safer for patients and doctors alike, and reduces demand on medical resources.”

Schiff also noted that the Community Clinic Association requested a national emergency declaration so they could be reimbursed for telehealth services. “Given President Trump’s recent declaration, Medicare is reimbursing for telemedicine, but Medicaid reimbursement remains an important issue,” he says, adding that the California Department of Health Care Services sent a request to CMS that would allow telehealth/virtual visits amongst other Covid-19 emergency responses in Medi-Cal. Once that is approved, California can send Medi-Cal dollars to clinics for telehealth.”

Additionally, to help with social distancing and keep clinics a safe area, community health centers have begun pre-screening patients for flu-like symptoms before they enter a facility and are encouraging patients to come in only when necessary.

“Clinics that serve particularly vulnerable populations like the LA LGBT Center, which sees a large immunosuppressed population, will rely on telehealth to help keep their patients safe,” Schiff says. “Drive-through testing has become available at some locations in Northern California to limit potentially infected people from coming into hospitals. I am hopeful drive-through testing will continue to become more widely available, but there is a limitation due to the lack of tests.”

What about support and guidance for organizations that provide housing or services for the homeless, or supportive/affordable housing and for the homeless population in general?

“Our homeless population faces a significant risk to contracting Coronavirus, and the city and state are beginning to step up,” Schiff says. “Gov. Newsom announced that homeless persons would be prioritized as a vulnerable population and the city is beginning to deploy resources directly to the homeless population where they are. But the federal government must also do more and I am advocating that federal assistance for the homeless be dramatically increased –both to deal with the broader epidemic of homelessness, but particularly the unique health risks now presented to this population. Much more must be done, and drastic steps to get people off the streets to create social distance may be necessary.”

AIDS Healthcare Foundation has offered recently purchased 74-room motel that has not yet been leased out as temporary housing for coronavirus patients.

Jeffrey King, founder and executive director of In The Meantime Men, is very direct, raising the issue of having sex during the coronavirus pandemic.

“The coronavirus has us all making major adjustments in our lives,” King says 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.”

King shares information provided by the Commission on HIV in Los Angeles County for individuals living with HIV and their possible concerns regarding the coronavirus.

The Commission advises, in part:

“The novel coronavirus is understood to spread mainly from person-to-person through respiratory droplets when an infected person coughs or sneezes, or when a person touches a surface with these droplets and then touches their eyes, nose, or mouth. Common symptoms in a person with the novel coronavirus infection include fever, dry cough and shortness of breath or difficulty breathing.

 

“Persons living with controlled HIV (i.e. normal CD4 count and undetectable viral load) do not appear to be at greater risk than the general public for either acquiring or becoming ill with the coronavirus.

 

“Persons living with HIV, however, may be at increased risk for an adverse response to the infection if they have: Low CD4 cell counts, particularly under 350 cells/ml (considered not virally suppressed and therefore at higher risk); 60 years of age and older; heart, lung, or kidney disease; other poorly managed health conditions, including hypertension and diabetes.

 

“Public Health recommends that individuals at higher risk for serious illness associated with COVID-19 take the following actions and precautions: Practice regular hand washing (20 seconds with soap and hot water);

 

“Cover your cough or sneeze with a tissue, then throw the tissue in the trash and wash your hands. If you do not have a tissue, cough or sneeze into your elbow; Have a 30-day supply of all medications; Remain fully adherent to all regularly prescribed medications; Make sure all your vaccinations are current, including against influenza (“flu”) and pneumonia;

 

“Practice social distancing (this means limiting the time you spend in public and keeping a 6-foot distance between yourself and strangers when you are in public); Stay home if you are even mildly sick; Call your health care provider before seeking medical care so that appropriate precautions can be taken.”

King is pointed and non-judgmental in his Facebook video. “As we engage in sex, I want you to consider the choices and the decisions you’re making as mature adults and to be as responsible and to make sober, conscious decisions. We got this,” he says.

“Many of us have lived through traumatic pandemic experiences to include the introduction of the AIDS virus to America and the Black community,” King tells the Los Angeles Blade. “We will be able to rise above the fear of the unknown relative to this new man-made viral construct we now call the coronavirus. The question remains: will we ever end the coronavirus?

“In The Meantime has cancelled its annual scholarship fundraiser, halted its mobile HIV testing efforts, and we are implementing an amplified sanitation protocol at our facility,” he says. “We will continue to show up for our clients hosting smaller groups implementing social distancing.”

But the too-familiar refrain remains: what’s happening? What’s true? What are the facts? Who can we trust as we bounce between one conspiracy theory and another?

California’s LGBTQ community leaders are striving to be of service and trusted elected leaders are diligently upholding their oath.

Criminal defense attorney and West Hollywood City Councilmember John Duran, for instance, has been posting daily briefings on his Facebook page.

Map via the LA Times coronavirus tracker

After LA County released new data showing demographics and location for coronavirus cases, on March 21, Duran posted his assessment, which reads, in part:

LA County cases: 292 (up from 231)
LA County deaths: 2 (up from 1)

Demographics to date:
Children – 4 cases
Ages 18-40 – 72 cases
Ages 41-65 – 82 cases
Over age 65 – 34

West Hollywood cases – 15
Brentwood cases – 16
Long Beach – 12
Melrose district – 11
Encino – 8
Hollywood – 7
Sherman Oaks – 6
Pacific Palisades – 6
Beverly Hills – 5
Manhattan Beach – 5

 

Those are the top numbers in LA County. WHAT? HOW IS THAT POSSIBLE? HOW CAN IT BE THAT THESE COMMUNITIES HAVE MORE REPORTABLE CASES THAN THE OTHER DENSE PARTS OF THE COUNTY LIKE DOWNTOWN, KOREATOWN, HUNTINGTON PARK?

 

First – the Los Angeles County Department of Public Health is saying – it doesn’t matter. There are no “safer” or “more dangerous” parts of the community.

 

But remember – these stats are cases reported today – but likely infected one or two weeks ago. And remember that anyone infected today – won’t be reported until one or two weeks from now.

 

OR NOT TESTED AND REPORTED AT ALL. NOT REPORTED AT ALL.

 

LA County is now advising doctors to give up on TESTING patients in the hope of containing the virus. Doctors are being told to only test patients if a positive result could change how they would be treated.

 

The numbers showing the communities with the highest number of reported cases are places where people have a bit more income, a bit more education and a bit more aggression (?). Look at that list once again. Those are places where individuals and communities tend to have the resources and the aggression to get results.

 

And they did.

 

Look at the age demographics also. The highest number are neither the very young or the very old. They are the age ranges where people would tend to be working and have access to health care and testing. There are many different lenses to look at data and think about it.

 

BUT IT DOES RAISE THE QUESTION – SHOULD WE BE THINKING ABOUT THIS AT ALL RIGHT NOW? I say no.

 

Remember how during the discussions about earthquakes we were warned that for the first three days after the cataclysm – you were on your own while government was gearing up with a response. You had to be self reliant and self sustaining.

 

Well – this cataclysm – is still shaking. It hasn’t stopped yet. We are on the front end of the cataclysm not the aftershocks. When the big quakes hit – how many of us are thinking at that moment – but what about my rent? My job? My future? NOPE. The only question in that moment is AM I GOING TO SURVIVE THIS?

 

That’s where we are. In the midst of the shaking.

 

There will be a time in a couple of weeks (hopefully when the shaking has stopped) to worry about the rebuild and cleaning up the mess. THAT IS NOT NOW.

 

NOW – is about isolating and minimizing social contacts until the Shadow passes. That is all for now. We will have lots of work to do on the other side of the initial hit. And we will work together on that when the time is here….

 

80% of those of us who get exposed to COVID 19 will experience mild to moderate symptoms. It will infect and pass through us and our bodies will create antibodies.

Pray and focus on the other 20% who may need ventilators, hospital beds and treatment. And the possibly 2-3% who may die.

 

But in the meantime, try to stay in the group called DIDN’T get exposed to COVID 19 in this first wave of cataclysm because I isolated, washed my hands and kept social distancing. I know it’s only the first week of interruption and already we are all feeling restless. But remember –

WE ARE STILL IN THE SHAKING. BRACE YOURSELF. DUCK AND COVER. AND WAIT FOR THE SHAKING TO STOP.

 

The clean up and rebuild will be for another day and time.

 

Onward! Until the next indicated step…..”

In her weekly newsletter, LA County Supervisor Sheila Kuehl explained why the county took such a difficult decision to issue the “Safer At Home” Order, along with the City of LA and she offered some advice:

“There are a number of creative ways to cope and they are important for our health and sanity:  have an indoor scavenger hunt, work out by watching your gym or others on tv, read one of those many books you bought and put aside, walk around the block (keeping six feet away from everyone—just smile and give virtual hugs and high fives), call someone you haven’t talked to in a while (the former President of the CA Senate, John Burton, who was my seatmate in the Senate, called me out of the blue last night just to talk), dig up that old Monopoly set and buy Park Avenue, and, of course, keep informed.

 

For lots of up-to-date, accurate information about COVID-19 in LA County, regularly visit lacounty.gov/covid19.

 

Thank you all for everything you’re doing, and you can bet I will continue to send updates as they come in.

 

Together, we can get through this by doing our part to “flatten the curve”.

 

As Hill Street Blues Sgt. Esterhaus used to say, “Hey, let’s be safe out there!””

And, as Gov. Newsom tweets:

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AIDS and HIV

AIDS @40: The White House laughs as gays try to save themselves

Over a third of them have died. It’s known as “gay plague.” (Laughter.) No, it is. I mean it’s a pretty serious thing […]

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President Ronald Reagan speaking to the American Foundation for AIDS Research May 31, 1987. Five years previously Reagan's White House Deputy Press Secretary Larry Speakes led reporters in a round of laughter over people infected with HIV/AIDS on Oct. 15, 1982 (Photo Credit: YouTube Screen shot via Reagan Library)

By Karen Ocamb | LOS ANGELES – Like so many others in California, lesbian feminist Ivy Bottini had high expectations for the federal government to finally intervene in the growing AIDS crisis after the first congressional committee hearing on the mysterious new disease, chaired by Rep. Henry Waxman, (D-CA) on April 13, 1982.

There was very little press coverage of the hearing — held at the Los Angeles Gay Community Services Center on Highland Avenue in Hollywood. But years later, Dr. Anthony Fauci of the National Institutes of Health recalled a quote reported by the Washington Blade

“I want to be especially blunt about the political aspects of Kaposi’s sarcoma (KS),” Waxman said. “This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated-against minorities….There is no doubt in my mind that if the same disease had appeared among Americans of Norwegian descent, or among tennis players, rather than among gay males, the responses of the government and the medical community would have been different.”

The gay San Francisco newspaper The Sentinel published a very short brief on April 16 entitled “House Holds Cancer Hearings” about “the gay cancer.” The paper quoted an unnamed subcommittee staffer saying the CDC, “which is coordinating research on the baffling outbreak, ‘should not have to nickel and dime’ for funds.” The brief appeared next to a column written by gay nurse Bobbi Campbell, who wrote about going to The Shanti Project to get emotional support for his KS. 

Bottini’s take-away from the Waxman hearing was that no one really knew how AIDS was transmitted. She was upset. Her friend Ken Schnorr had died just before the hearing and Bottini had to explain to Ken’s distraught mother that he had not been abused at the hospital — the purple bruises on his body were KS lesions.

After weeks of governmental inaction, Bottini called Dr. Joel Weisman, Schnorr’s gay doctor, to update the community at a town hall in Fiesta Hall in West Hollywood’s Plummer Park. Weisman had sent gay patients to Dr. Michael Gottlieb and was one of the co-authors on the first CDC public report about AIDS on June 5, 1981.  

Bottini later recalled how gay men often thanked her for saving their lives at that packed town hall. Bottini subsequently founded AIDS Network LA, to serve as a clearing house for collecting and disseminating information. But not everyone bought the science-based premise that AIDS was transmitted through bodily fluids — including Bottini’s friend Morris Kight, prompting a deep three-year rift.

Nonetheless, groups offering gay men advice on how to have safe sex started emerging, as did peer groups forming for emotional, spiritual and healthcare support. The Bay Area Physicians for Human Rights, Houston’s Citizens for Human Equality and the new Gay Men’s Health Crisis in New York City published pamphlets and newsletters

Panic and denial were wafting in tandem through gay Los Angeles, too. In Oct. 1982, friends Nancy Cole Sawaya (an ally), Matt Redman, Ervin Munro, and Max Drew convened an emergency informational meeting at the Los Angeles Gay Community Services Center on Gay Related Immunodeficiency Disease (GRID, soon to be called AIDS) delivered by a representative from San Francisco’s Kaposi’s Sarcoma Foundation.  

“My friends and I were in New York in 1981, hearing stories among friends coming down with this mysterious disease. We realized that back home in L.A. there was no hotline, no medical care, and no one to turn to for emotional support,” Redman told The Advocate’s Chris Bull on July 17, 2001 for a story on the 20th anniversary of AIDS. “For some reason I wasn’t really scared. It was so early on that no one could predict what would happen.”

That quickly changed when the friends realized there was no level of governmental help forthcoming. They set up a hotline in a closet space at the Center, found 12 volunteers and asked Weisman to train them on how to answer questions, reading off a one-page fact sheet. The idea was to “reduce fear” and eventually give out referrals to doctors and others willing to help. 

AIDS Project Los Angeles organizers (Photo courtesy of APLA)

The four also reached out to friends to raise money, netting $7,000 at a tony Christmas benefit to fund a new organization called AIDS Project Los Angeles. They set up a Board of Directors with Weisman and longtime checkbook activist attorney Diane Abbitt as Board co-chairs. They gaveled their first Board meeting to order on January 14, 1983 with five clients. The following month, APLA produced and distributed a brochure about AIDS in both English and Spanish. 

Four months later, in May, APLA and other activists organized the first candlelight march in Los Angeles at the Federal Building in Westwood and in four other cities. The LA event was attended by more than 5,000 people demanding federal action. The KS/AIDS Foundation in San Francisco was led by people with AIDS carrying a banner that read “Fighting For Our Lives.” When the banner was unfurled at the National Lesbian and Gay Health Conference that June by activists presenting The Denver Principles, the crowd cried, with a 10-minute ovation. 

Photograph Courtesy of APLA

“If the word ‘empowerment’ hadn’t yet been a part of the health care lexicon, it was about to be,” HIV/AIDS activist Mark S. King wrote in POZ. The group took turns reading a document to the conference they had just created themselves, during hours sitting in a hospitality suite of the hotel. It was their Bill of Rights and Declaration of Independence rolled into one. It would be known as The Denver Principles, and it began like this:

‘We condemn attempts to label us as ’victims,’ which implies defeat, and we are only occasionally ’patients,’ which implies passivity, helplessness, and dependence upon the care of others. We are ’people with AIDS.’”

While The Denver Principles were injecting self-empowerment into the growing movement of people with AIDS, the Reagan administration was infecting America through mass media association of homosexuality, AIDS and old myths of sexual perversion. Ronald Reagan was keenly aware of his anti-gay evangelical base, appointing Gary Bauer as a domestic policy advisor. Bauer was a close associate of James Dobson, president of the powerful Religious Right group Focus on the Family.

Reagan also picked anti-abortion crusader C. Everett Koop as Surgeon General — which turned into a mini-scandal when Koop agreed that sexually explicit AIDS education and gay-positive materials should be federally funded for schools. “You cannot be an efficient health officer with integrity if you let other things get in the way of health messages,” Koop told the Village Voice. Koop was slammed by the Moral Majority’s Rev. Jerry Falwell and other anti-gay evangelicals. 

But perhaps one most egregious examples of the Reagan administration’s homophobic callousness towards people with AIDS came from the persistent laughter emanating from the podium of White House Deputy Press Secretary Larry Speakes.

On Oct. 15, 1982, less than four weeks after Reps. Henry Waxman and Phillip Burton introduced a bill to allocate funds to the CDC for surveillance and the NIH for AIDS research, reporter Lester Kinsolving asked Speakes about the new disease called A.I.D.S..

Kinsolving: Larry, does the President have any reaction to the announcement — the Center for Disease Control in Atlanta, that AIDS is now an epidemic and have over 600 cases? 

SPEAKES: What’s AIDS? 

Kinsolving: Over a third of them have died. It’s known as “gay plague.” (Laughter.) No, it is. I mean it’s a pretty serious thing that one in every three people that get this have died. And I wondered if the President is aware of it? 

SPEAKES: I don’t have it. Do you? (Laughter.) 

Kinsolving: You don’t have it. Well, I’m relieved to hear that, Larry. (Laughter.) I’m delighted. 

SPEAKES: Do you? 

Kinsolving: No, I don’t….In other words, the White House looks on this as a great joke? 

SPEAKES: No, I don’t know anything about it, Lester. What – 

Kinsolving: Does the President, does anybody in the White House know about this epidemic, Larry? 

SPEAKES: I don’t think so. I don’t think there’s been any – 

Kinsolving: Nobody knows? 

SPEAKES: There has been no personal experience here, Lester. 

The exchange goes on like that. For another two years. On World AIDS Day, Dec. 1, 2015, Vanity Fair debuted a 7:43 documentary directed and produced by Scott Calonico about that 1982 exchange between Kinsolving and Speakes. But Calonico also found audio of similar exchanges in 1983 and 1984 for his film, “When AIDS Was Funny.”

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. 

This is Part 4 of a series of 5 articles on AIDS @40.

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AIDS and HIV

Oregon House passes over-the-counter HIV prevention drugs bill

HIV-related stigma, homophobia and transphobia, and lack of access create equity gaps in HIV prevention, testing, and treatment

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Oregon State Capitol Building in Salem (Photo Credit: State of Oregon)

SALEM, OR. – The Oregon House of Representatives re-passed House Bill 2958B, a measure that would allow Oregon’s pharmacists to prescribe, dispense, and administer both pre-exposure, (PrEP) and post-exposure prophylaxis, (PEP) the two drugs designed to prevent HIV infection.

The bill also sets the legal authority to conduct HIV tests in the state. The measure had passed in April on a 44-11 vote, was sent to the Senate, and then the measure was sent back after a compromise and conference bill was voted out of the Senate returning it to the House.

The Oregon House on Monday re-passed House Bill 2958 B, which allows pharmacists to prescribe, dispense, and administer both pre-exposure and post-exposure prophylaxis. Known as PrEP and PEP, the two drugs prevent HIV infection. The bill also clarifies that pharmacists have the legal authority to conduct HIV tests. The bill, which previously passed out of the House in April, passed today 44-11.

In an interview with Oregon Public Broadcasting, Rep. Rob Nosse, (D-SE Portland) who is openly gay and a lead sponsor of the bill noted; “Throughout this bill’s journey through the legislative process, we heard repeatedly that pharmacists have the training necessary to administer these life-saving drugs.”

“By making PrEP and PEP more widely available, we can get these medicines into communities that have been disproportionately impacted by HIV,” he added.

Approximately 1.2 million people in the U.S. have HIV. About 13 percent of them don’t know it and need testing. HIV continues to have a disproportionate impact on certain populations, particularly racial and ethnic minorities and gay, bisexual, and other men who have sex with men.

CDC estimates of annual HIV infections in the United States show hopeful signs of progress in recent years. CDC estimates show new HIV infections declined 8% from 37,800 in 2015 to 34,800 in 2019, after a period of general stability.

While new HIV diagnoses have declined significantly from their peak, the CDC and other Public Health officials across the U.S. have expressed concern of HIV resurgence due to several factors, including trends in injection and other drug use.

“When this disease first came into national focus, it was often referred to as ‘gay related immune deficiency,’ or GRID. Today, HIV is recognized as a disease that can be contracted by anyone, and those who are diagnosed as HIV positive can be given resources and medical support to live a long and healthy life,” said Nosse. “This bill is potentially a lifesaving solution that will prevent deaths from HIV by making PrEP more accessible to all who need it.”

Lawmakers in support of the bill say HIV-related stigma, homophobia and transphobia, and lack of access create equity gaps in HIV prevention, testing, and treatment, OPB reported.

“This is about reducing barriers to access for life-saving medications,” said Rep. Dacia Grayber, D-Tigard, who also co-sponsored the bill. “PrEP and PEP are both vital parts of the toolkit for ending the HIV epidemic. By empowering pharmacists to test for HIV and prescribe these medications, we make it easier for Oregonians to get the health care services they need.”

“Preventative treatments for HIV have saved countless lives, but not all communities have equal access to these drugs, and we can see the disparities in outcomes for low-income and BIPOC communities,” said co-sponsor Rep. Karin Power, D-Milwaukie. “HB 2958 will help to distribute these life-saving drugs more broadly, so that we can begin to close these gaps in our health care system and ensure that more people are protected.”

HB 2958 B now heads to Governor Kate Brown for her signature.

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AIDS and HIV

AIDS @40: AIDS disaster overwhelms the gays

“This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated-against minorities.”

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Undated photograph of U.S. Rep. Henry Waxman, (D-Beverly Hills) (Photo Credit: Library of Congress via LA Times)

By Karen Ocamb | LOS ANGELES – After the Centers for Disease Control published his June 5, 1981 article on the mysterious new infectious disease sickening and killing gay men, Dr. Michael Gottlieb, an immunologist at UCLA School of Medicine, expected the government to show up and save the day. But it was Ronald Reagan, America’s new and the conservative president who decided to dance with the right-wing anti-LGBTQ evangelicals who brought him to the White House.

“Government is not the solution to our problem, government is the problem,” Reagan said at his Inauguration, before drastically cutting the federal budget, including the CDC and National Institutes of Health budgets and healthcare programs such as Medicare and Medicaid impacting more than a fifth of the US population, according to a Washington Post story at the time.

“I thought there’d be an aggressive response by the federal government, by the National Institutes of Health and CDC with the funding for research, but that never happened,” Gottlieb told the Los Angeles Blade. “We were very frustrated — very frustrated. We piggybacked the research on funding that we already had for other things. But we continued to do the work.” 

In early 1982, the CDC launched a national case–control study that found that more case-patients were sexually active and more likely to have had sexually transmitted infections than their control gay patients. Meanwhile, in Los Angeles, Dr. David Auerbach, who replaced Dr. Wayne Shandera, the CDC Epidemic Intelligence Service (EIS) officer assigned to the Los Angeles County Department of Health Services, was asked by a gay community member if there was a possible sexual link between “the still rare cases” in Southern California. Auerbach collaborated with Dr. William Darrow of the Task Force on Kaposi’s Sarcoma and Opportunistic Infections to investigate 13 of the first 19 cases reported in LA and Orange counties. They found that “nine had reported sexual contact with another person reported with AIDS within 5 years before their onset of symptoms,” the CDC reported. They extended their epidemiologic investigation nationwide and, together with the case–control study, found evidence that “strongly suggested that the new syndrome was caused by a sexually transmissible infectious agent. Nonetheless, whether because of competing hypotheses or merely denial, many scientists and the public were skeptical of the infectious agent causation theory.”

By the end of 1982, new cases of AIDS were reported in hemophiliacs, needle-sharing drug users, infants, women, people who received blood transfusions and heterosexual Haitian migrants. 

The “gay plague” impacted heterosexuals, too. “[I]t was clear that others were at risk for the disease, and what had been complacency turned into serious concern, even panic. Many persons caring for AIDS patients were concerned about their own safety and, in some cases, health-care workers refused to provide needed care. To provide guidance for protection of clinicians and laboratory workers managing patients with AIDS and their biologic specimens, CDC issued guidelines in November 1982 that were based on those previously recommended to protect against hepatitis B virus infection,” wrote James W. Curran, MD, and Harold W. Jaffe, MD in  AIDS: the Early Years and CDC’s Response, a CDC special report in 2011.

Proud and thriving gay liberationists and suave disco and ballroom dancers started wasting away uncontrollably. KS lesions blotched faces and bodies. Muscles atrophied. Beauty was betrayed by shrunken cheeks. Bowels wouldn’t behave. Sweat fell like pouring rain onto bed sheets. Spirituality clashed with the most practical questions about quantity versus the quality of life. Gay men turning 20, rejected by their families after being outed by AIDS, died forlornly in the arms of lesbian friends, knowing they would never fall in love. AIDS was a cruel thief. Support groups started popping up: Gay Men’s Health Crisis in New York; Shanti and The Kaposi’s Sarcoma (KS) Research and Education Foundation and AIDS Project Los Angeles in 1983.  Flirtations singer Michael Callen and Richard Berkowitz, two gay patients of Dr. Joseph Sonnabend, published How to Have Sex in an Epidemic, which essentially created the idea of safe sex with use of a condom. 

On April 13, 1982, Rep. Henry Waxman, then the Chair of the House Energy and Commerce Subcommittee on Health and the Environment convened the first congressional hearing on AIDS (Acquired Immune Deficiency Syndrome). Waxman’s district included the still unincorporated gay haven of West Hollywood and he went to where the gays were — the Los Angeles Gay and Lesbian Community Services Center on Highland Ave. in Hollywood, California. Years later, in presenting Waxman with an award, NIH’s Dr. Anthony Fauci recalled that event

According to an account in the Washington Blade, DC’s gay newspaper of record at that time, Rep. Waxman did not mince words. “‘I want to be especially blunt about the political aspects of Kaposi’s sarcoma,’ Rep. Waxman said.  ‘This horrible disease afflicts members of one of the nation’s most stigmatized and discriminated-against minorities.’  He continued, ‘There is no doubt in my mind that if the same disease had appeared among Americans of Norwegian descent, or among tennis players, rather than among gay males, the responses of the government and the medical community would have been different.’  He noted that the outbreak of Legionnaire’s disease a few years earlier appeared to have received greater attention and funding for research and treatment than did the latest outbreaks of Kaposi’s sarcoma and pneumocystis pneumonia among gay men.”

Five months later, on Sept. 24, 1982, Waxman and Rep. Phillip Burton introduced legislation to allocate funds to the CDC for surveillance and to the NIH for AIDS research.

Dr. James Curran, head of the CDC’s Task Force on Kaposi’s Sarcoma and Opportunistic Infections, estimates that tens of thousands of people may be affected by the disease. Bobbi Campbell, a San Francisco nurse who came out Dec. 10, 1981 in the San Francisco Sentinel as the first KS patient to go public, also testified. The self-proclaimed “KS Poster Boy,“ was asked to translate “cold data into flesh and blood and tears,” and to speak “of the men, my brothers, who have Kaposi’s sarcoma and other illnesses.” 

Gottlieb was there but he doesn’t remember much — just that his friend Steve Schulte was there and he met Tim Westmoreland, the gay man who staffed and organized the hearing for Waxman. And he remembers the Center as a broken-down old motel with the meeting held outside. It didn’t get much press coverage.

 

Dr. Michael Gottlieb with Ivy Bottini: “Young City At War production photo by Andy Sacher, Courtesy of The Lavender Effect®.”

Gottlieb does remember his friendship with Ivy Bottini, an artist turned AIDS activist. Bottini’s old friend from Long Island, Ken Schnorr, had collapsed and died in 1982. “After Ken died, something said to me there is more to this than we see,” Bottini told the LA Blade. “So, for some reason, I just picked up the phone and called the CDC. I had never done that before. ‘Look, this just happened to my friend. Do you have any answers? The hesitancy at the other end of the line, the hemming and the hawing before they would say anything — I just knew it was bad.”  

The CDC official explained that the bruises on Ken’s body were Kaposi sarcoma, usually found in elderly Jewish men. “And that was the explanation,” she said. “I got off and thought, ‘no, this doesn’t make sense because Ken was one of three first guys diagnosed with Kaposi in town, in West Hollywood, in L.A., and that started me on working to find out what the hell was going on. It was just horrible.” 

Waxman’s hearing was held shortly after Schnorr’s death. Bottini was there. “We all met in the lobby and under the stairs on the first floor,” she said. “Waxman’s basic message was spread the word: nobody really knows how it’s passed.”   

“Thousands of deaths and no one cares! No one cares – except us,” an emotional Bottini told Andy Sacher of the Lavender Effect about that time. “That was inhuman what was really happening to gay men. It was inhuman how they were demonized.” 

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. 

This is Part 3 of a series of 5 articles on AIDS @40.

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