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Puerto Rico HIV/AIDS groups struggling to recover from Maria

“The country is in a horrible crisis”

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Bill's Kitchen, gay news, Washington Blade

An employee of Bill’s Kitchen, a San Juan-based organization that prepares meals for people with HIV/AIDS, puts diesel into a generator on Jan. 30, 2018. Utility crews the next day restored electricity to Bill’s Kitchen, which had had not had power since Hurricane Irma brushed Puerto Rico on Sept. 7, 2017. (Washington Blade photo by Michael K. Lavers)

SAN JUAN, Puerto Rico — It was shortly after 4 p.m. on Jan. 30 when an employee of Bill’s Kitchen, an organization that prepares meals for Puerto Ricans with HIV/AIDS, added diesel to a large generator that is on it’s roof.

The generator — which broke down the week before — has powered one of Bill’s Kitchen’s two walk-in freezers and the top two floors of its building in San Juan’s Hato Rey neighborhood since the day before Hurricane Maria devastated Puerto Rico on Sept. 20. Bill’s Kitchen Executive Director Sandy Torres insisted the Washington Blade take a picture of her employee refilling the generator. She also described him as “our star employee, handyman, mechanic, inventor.”

“If anything happens, he is there,” said Torres.

A lack of electricity is one of the multitude of problems that Bill’s Kitchen and other HIV/AIDS service providers in Puerto Rico continue to face nearly five months after Maria.

People with HIV/AIDS in the days immediately after Maria were unable to receive their medications because their clinics were closed or they could not get to them because of flooding, damaged roads or a lack of transportation. Fallen trees and other debris prevented some of them from leaving their homes.

San Juan Mayor Carmen Yulín Cruz told the Blade during an interview in D.C. last November that a clinic the San Juan Department of Health operates reopened two weeks after Maria and was able to distribute medication, food and water to patients.

The Puerto Rico Community Network for Clinical Research (PR CoNCRA), an HIV/AIDS service organization that is based near the main campus of the University of Puerto Rico in Río Piedras, reopened a week after Maria. PR CoNCRA Executive Director Rosaura López-Fontánez told the Blade on Jan. 30 that her clients were able to receive their medications because Caridad, a Puerto Rican pharmacy chain, had a space inside the organization.

Ivette González of Asamblea Permanente de Personas Infectadas y Afectadas con VIH/SIDA de Puerto Rico (APPIA), told the Blade on Feb. 3 during an interview in Old San Juan that people with HIV/AIDS who live outside of the Puerto Rican capital had a more difficult time receiving their medications after Maria.

“In San Juan we had access to medications,” said González.

González, who lives with HIV and advises Cruz on her administration’s response to the epidemic, told the Blade that one of the immediate challenges after Maria was getting people with HIV/AIDS back into treatment.

She said APPIA worked with Merck, the Puerto Rico Department of Health’s AIDS Drug Assistance Program and the local planning council that allocates Ryan White Comprehensive AIDS Resources Emergency (CARE) Act funds to San Juan and other municipalities in Puerto Rico determine which clinics were able to operate. González told the Blade radios were the only “functioning means of communication” after Maria.

“If their clinic was not available, the patient was directed and referred to where they should be,” she said. “The important thing was to re-link the patient to their health care.”

Ivette González of Asamblea Permanente de Personas Infectadas y Afectadas con VIH/SIDA de Puerto Rico (APPIA) advises San Juan Mayor Carmen Yulín Cruz on her city’s response to HIV/AIDS. (Washington Blade photo by Michael K. Lavers)

González said some APPIA clients still did not have access to their medications two months after Maria. She told the Blade a lack of electricity, telephone and Internet further complicated APPIA’s ability to communicate with them.

“All of this affected us,” she told the Blade. “As a result it made our work much more difficult.”

Hurricane damaged offices, equipment

Maria also damaged many of the facilities and equipment the HIV/AIDS service organizations used.

López-Fontánez told the Blade during a previous interview that PR CoNCRA “lost” more than $250,000 in equipment and medication.

Several feet of water flooded the first floor of the building in which PR CoNCRA’s offices are located. Maria also damaged its sewage and electrical systems.

“We are still finding things,” López-Fontánez told the Blade on Jan. 30 as Anselmo Fonseca of Pacientes de Sida Pro Política Sana, a San Juan-based HIV/AIDS service organization, sat next to her in PR CoNCRA’s conference room.

From left: Anselmo Fonseca of Pacientes de Sida Pro Política Sana and Puerto Rico Community Network for Clinical Research Executive Director Rosaura López-Fontánez in López-Fontánez’s office in Río Piedras, Puerto Rico, on Jan. 30, 2018. (Washington Blade photo by Michael K. Lavers)

Maria destroyed Bill’s Kitchen’s switchboard. The organization did not have working landlines in its San Juan offices until late last month.

Fumes from Bill’s Kitchen’s large generator forced its administrative staff to convert a second floor conference room into a makeshift office. Humidity and a lack of air conditioning made the building’s first floor offices damp.

A small generator provided electricity to the first floor until it was turned off at 4:30 p.m. It powered lights, fans that staff were using in their offices and a room with Internet access that had a small air conditioner conversion unit on the wall.

“You see the way that we are working here,” Torres told the Blade. “You can smell the humidity.”

Maria damaged the door to AIDS Healthcare Foundation’s new clinic in the municipality of Trujillo Alto that is under construction.

Hurricane Maria damaged the door of AIDS Healthcare Foundation’s new clinic that is under construction in Trujillo Alto, Puerto Rico. (Washington Blade photo by Michael K. Lavers)

The inside of the facility, which will include a pharmacy and exam rooms, was undamaged.

HIV/AIDS organizations distributed food, generators after Maria

HIV/AIDS service organizations in the San Juan metropolitan area also became staging areas for relief supplies after Maria.

AIDS Healthcare Foundation distributed generators and packages from its existing Trujillo Alto clinic that is located on the campus of a drug rehabilitation center. It also provided drinking water and other supplies to clients and local residents.

Cruz’s administration worked with AIDS Healthcare Foundation to deliver roughly 150 generators to people with HIV/AIDS after Maria. González told the Blade that APPIA, AIDS Healthcare Foundation and Cruz’s administration also provided assistance to HIV/AIDS service organizations, domestic and gender-based violence groups and children’s homes outside of San Juan.

AIDS Healthcare Foundation distributed generators from its clinic in Trujillo Alto, Puerto Rico, after Hurricane Maria. (Photo courtesy of Ariel Negron/AIDS Healthcare Foundation)

Ariel Negron, an employee at AIDS Healthcare Foundation’s Trujillo Alto clinic, noted to the Blade on Jan. 30 a woman from Caguas, a city that is roughly 20 miles south of San Juan, is among those who received supplies from the organization after Maria. Negron said the woman had not had electricity or water since Hurricane Irma brushed Puerto Rico on Sept. 7.

“She was so amazed that there was water here,” said Negron.

Bill’s Kitchen did not have electricity from Sept. 7 until it was restored on Jan. 31. The organization in the weeks and months after Maria prepared meals for PR CoNCRA clients and staff, doctors who were volunteering in the municipality of Toa Alta, which is roughly 15 miles southwest of San Juan, and elderly people who could not leave their apartments in high-rise buildings near their San Juan offices because of the lack of power.

Bill’s Kitchen also delivered portable gas stoves to their clients and replaced mattresses and beds that Maria damaged.

López-Fontánez said a woman who lives next to PR CoNCRA’s offices “lost everything” during Maria. She told the Blade she gave her an old couch that she had in her home, while another PR CoNCRA staffer brought her a mattress.

“We all gathered,” said López-Fontánez.

Island was ‘in a disaster for a long, long time’ before Maria

Puerto Rico has one of the highest HIV/AIDS infection rates in the U.S. People with HIV/AIDS were vulnerable before Maria because of a combination of factors that include a lack of resources to fight the epidemic and Puerto Rico’s debt crisis.

The U.S. commonwealth’s economy had been in recession for more than a decade before Maria. Puerto Rico’s power grid had also fallen into disrepair.

“People blame Maria for all the disaster,” López-Fontánez told the Blade. “Yes, it caused a lot of disaster, but this country as in a disaster for a long, long time. What Maria did it just said . . . now you can see it better.”

Fonseca added Maria “pulled back the veil.”

González told the Blade that Puerto Ricans with HIV/AIDS “did not have access to medications” in 2006, 2017 and 2012. She also noted advocates and service providers “practically had to protest in the street asking for our medications.”

González said the situation for people with HIV/AIDS in San Juan has improved since Cruz took office in 2013. González nevertheless told the Blade the Puerto Rican government “thinks the problem has been resolved because there are medications.”

“We continue to stereotype and stigmatize HIV with the gay community,” she added. “It is one of the challenges that we have in Puerto Rico.”

Ponce Mayor María “Mayita” Meléndez on Feb. 2 noted to the Blade that she has urged the federal government to restore Ryan White CARE Act funds her city used to provide medications and other care to people with HIV/AIDS. Torres and other service providers with whom the Blade spoke said Maria has made navigating local and federal bureaucracies even more challenging.

“Puerto Rico is a very polarized country,” said González. “Sometimes your party affiliation dictates your objectivity, but the reality is that if you are looking at the situation objectively, the federal government has been very slow and what little has been done has been very limited in helping Puerto Ricans in need.”

‘People have lost it’

Cruz and many of the HIV/AIDS service providers with whom the Blade spoke remain highly critical of how the federal and Puerto Rican governments have responded to Maria. The slow response continues to take a toll on Puerto Ricans with HIV/AIDS and those who provide services to them.

A utility pole rests precariously on a power line in Vieques, Puerto Rico, on Jan. 31, 2018. Damaged power lines and piles of debris are common sights on the island and throughout Puerto Rico in the wake of Hurricane Maria. (Washington Blade photo by Michael K. Lavers)

PR CoNCRA Medical Director Vivian Tamayo told the Blade on Jan. 30 that an IV specialist who worked at the organization for 13 years has left. Tamayo said roughly 40 of PR CoNCRA’s clients have moved to the U.S. mainland since Maria.

“You have to remember that this was also happening before the hurricanes,” added Manuel Quiñones, a PR CoNCRA case manager who shares an office with Tamayo that had several feet of water in it after Maria. “This is like the last push to go to the states.”

The Federal Emergency Management Agency denied Fonseca’s claim to fix the roof of his house near Trujillo Alto because the woman with whom he filled out the application said it was not his primary residence. López-Fontánez said the more than $120,000 in private donations that PR CoNCRA has received since Maria has allowed her organization to continue to operate.

Torres told the Blade she used private funding to hire a psychologist who provides support to Bill’s Kitchen’s clients and staff.

PR CoNCRA’s electricity was restored two weeks after Maria because it is near a hospital, but López-Fontánez said it “goes and comes.” She and Torres told the Blade that several of PR CoNCRA and Bill’s Kitchen’s clients and employees still have no electricity or water.

“That’s so difficult,” said López-Fontánez. “What it has done is that people have lost it.”

González told the Blade the electricity at her home in San Juan’s Puerto Nuevo neighborhood was restored less than a month ago.

The D.C.-based Food and Friends bought Bill’s Kitchen a new generator to replace the old one. Torres told the Blade that she plans to pick up the new generator on Thursday and hopes it will be installed this week.

A fire at a substation on Sunday caused a blackout that impacted Bill’s Kitchen, PR CoNCRA and large parts of the San Juan metropolitan area and northeastern Puerto Rico. Power was restored to Bill’s Kitchen and PR CoNCRA a few hours later.

“The country is in a horrible crisis,” González told the Blade. “We had a disaster, a catastrophe and there are still people who don’t understand the level of attention this requires.”

Editor’s note: Puerto Rico’s HIV/AIDS service organizations continue to seek donations that will allow them to serve their clients and repair damage they suffered during Maria. Information on how to contribute to them is below.

AIDS Healthcare Foundation

Bill’s Kitchen

Pacientes de Sida Pro Política Sana

PR CoNCRA

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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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