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Revisiting AIDS during this time of COVID-19

People who follow me on Twitter (@tomyamaguchi) may notice that I love to tweet obituaries. The Obits page is a place where I have found the life stories of interesting and unusual people. Now that I get most of my news online, I usually go to the Recent Deaths page on Wikipedia. The online encyclopedia lists each person’s death in the following order: name, age, country of citizenship at birth, subsequent nationality (if applicable), what subject was noted for, cause of death (if known), and reference. As I poured through the days of March, I noticed an increasing number of people who died of COVID-19. I decided to run a tally on a spreadsheet and have so far counted 144 deaths for that month. The average started at zero to one or two deaths per day. By mid March, the average was headed to five or six. By the end of the month, the average for all of March was about 4.5 per day.

Of course, a listing of such notables does not represent an accurate percentage of the entire population that has succumbed to COVID-19. As I counted out the number of deaths, it brought back to me memories of AIDS, which has also taken a number of notable people, including actors, writers, artists, scientists, and politicians. 

Forty years ago, just as AIDS was beginning to hit the gay community, my then wife and I decided to move with our 5-year-old daughter to the San Francisco Bay Area. For me, it was time for a change, and I had become weary of conservative San Diego. I was ready for a new community where progressive thinking represented the mainstream of the population. Yes, the community of Ocean Beach, where we last lived, was a very progressive place, but it was an island in a sea of rightwing politics. We lived in our little ghetto. If we wanted to see a movie, we walked to the Strand Theater. The Rocky Horror Picture Show was the midnight movie every Saturday. Food shopping was, of course, at OB Peoples Food. Couldn’t afford new clothes? The free box was behind the store, and the price was right. After several years, that was not enough.

Although I did not tell my family at the time, I had another consideration for moving to the Bay Area. The growing gay community in San Francisco was drawing me. Yes, there was a growing gay community in OB. However, San Francisco had so much more to offer. I was planning to eventually come out to my family and transition to a new life. I decided to wait until by daughter was a few years older. I did not want to leave my spouse alone to care for a small child.

In 1981, we bought a house. I was working in Point Richmond and commuting to work by bicycle. I had become a newspaper junkie and would stop in Albany (California, not New York) to pick up the morning papers; the Los Angeles Times that was flown up from LA earlier that morning and the national edition of the New York Times that was transmitted by satellite and printed by the Contra Costa Times. It was just a few weeks after moving into our house that I stopped at the newspaper racks was confronted by a disturbing headline. I am not sure which newspaper had the front page story, but it hit me like a brick. A strange cancer was spreading among gay men. No one could figured out why. It didn’t look good. It wasn’t long before the news became increasingly bleak. Instead of a few years, I ended up spending an entire decade in the closet. I was too afraid to come out for fear that I would catch this strange disease with a guaranteed death sentence.

Now those memories of four decades ago were returning with COVID-19. I found the need to process those feelings and memories. From my bookshelf, I pulled my hard bound copy of Randy Shilts’ And the Band Played On, the story of the first years of AIDS. Although I had picked it up from time to time as a reference work, it mostly sat on the shelf since the first time I read it three decades ago. I read it again, cover to cover.

There are obvious differences between the current COVID-19 and AIDS pandemics. AIDS is not spread by casual contact, although many people were panicking at the time over false stories that it could be. The lag time between infection and appearance of symptoms is much longer with AIDS. For COVID-19 that time is measured in days and weeks. The HIV virus hides in the bodies of its victims for years before becoming what we have come to call full blown AIDS. Unlike early years of AIDS, there was no mystery over what COVID-19 was or how it was spread. We have had corona viruses before. This is just a new type that our immune systems are not equipped to combat. 

However, there are a number of similarities between the two, which is why I decided to reread Shilts’ book.

Federal government fails to act

Both AIDS and COVIC-19 arrived during a period of fiscally conservative government. The Reagan administration arrived in 1981 with the philosophy that government was the problem and cutting the size of government was the solution. The budgets of the Center for Disease Control and other agencies devoted to the health and welfare of the general public were drastically slashed. Nothing was left to fight a mysterious, new disease that was first known as gay cancer and continued to be renamed until AIDS became the consensus designation. Even as medical researchers, members of Congress, and gay activists pleaded for more money and resources, the Reagan White House refused to budge. Any non military government spending was government waste, as far as they were concerned.

That small government philosophy is again at the center of the Trump administration, which has measured its success on the number of government regulations it has ripped up, especially those designed to protect our environment. Beyond the budget and regulation cutting, government failure has taken on a new dimension with the entry of Donald Trump into the White House. From the first day of his administration, Trump has proven himself to be completely unfit for the job of President. He entered the office with no previous experience in government. He boasted his ability to lead was based on his business experience, even though his failures in business are clearly documented, such as in Trump Nation by Timothy O’Brien. He has shown little interest in learning how government works and even asserted that Article II of the Constitution gives him the power to do anything he wants. Thanks to a complicit Republican controlled Senate, he has escaped removal by impeachment. Trump has operated like an organized crime boss, motivated only by self interest. His closest family members are now in charge of the White House, even though they are as inexperienced as he is. Turmoil and confusion have reigned with high staff turnovers and many positions being held by “acting” administrators. He is obsessed with undoing everything his predecessor Barack Obama has accomplished, starting with the Affordable Care Act that has provided medical insurance to millions of previously uninsured Americans. During the transition between the outgoing and incoming administrations, a training exercise involved how to respond to a global pandemic. Two thirds of the Trump team involved in that exercise have since left the administration. In addition, the Obama administration created a handbook on how to respond to a pandemic. That handbook has sat on the shelf, unread, since Trump took office. Trump fired Obama’s pandemic response team and later denied it, even though he is recorded on video admitting to the firing. He said he was doing it to save money. Even as the virus was spreading into the United States in February, Trump was calling it a hoax, just as he has called global warming a hoax. He would later deny saying that, even though that too is documented on video. He contradicts the advice of medical experts, bringing even more confusion and doubt among the public. Without a consistent and truthful message, Trump is only making the situation worse.

Stigmatizing, shame, and blame

During one of his press briefings on COVID-19, Trump admitting to a reporter that he takes no responsibility for his government’s failure to act. Just as with other crises, Trump would rather find others to blame. It is all China’s fault, he has asserted. He has accused China of failing to provide accurate information, even though Trump’s own intelligence agencies were giving him plenty of accurate information in early January. The Trump team insisted on calling it the Chinese virus and Wuhan virus. Blaming the Chinese has led to violent attacks on Asian Americans. Since then, Trump has pulled back on calling it a China virus. He has shifted his attack on New York City, which is getting hit especially hard as the pandemic grows across the country. Blame the liberal, Democratic, urban dwellers. Blame the poor who live in overcrowded apartments or on the street. Blame the immigrants from the South, even though there are fewer cases in Mexico than in the United States and borders walls won’t stop communicable diseases.

Gays took the blame for AIDS in the eighties, a well as the poor, the intravenous drug users, the sex workers, Africans, and other people with non-white skin. It was easier to blame the already stigmatized groups that face continual discrimination than find out how to treat or even prevent infections in the first place. As a result, many bright and talented people have been taken from us, just as the coronavirus has taken the notable people who fill the lists on Wikipedia. 

Public apathy and the failure of the media to report

Through the first years of AIDS, very few people cared. The media didn’t care and generally failed to report on the disease when only the stigmatized people in society were the victims. Ronald Reagan never mentioned AIDS during most of his two terms in the White House. That all changed with the death of Rock Hudson. Having a Hollywood star fall victim to the disease suddenly made it worth covering. By that time, it was too late for the thousands who had contracted HIV and were now dying of AIDS. Precious time was lost.

So it has been with the spread of the coronavirus. Not enough people took it seriously until after infections started popping up all over the country. By then, it was too late to contain. Now, we have to the price by basically shutting down the entire economy. If we had only demanded more preparation, more testing from the start, more ventilators in our hospitals, and more protective masks for our doctors and nurses. If only fewer of us had bought the Trump line that it was all a hoax.

Communities in denial

When we look back at the early days of the COVID-19 pandemic, one persistent image will be the thousands of young people on Florida beaches during Spring Break, blatantly ignoring warnings to avoid close contact. Only old people were dying, they told reporters. They preferred taking the risk of getting sick than giving up their fun on the beach. However, COVID-19 kills young people, too. In addition, infected young people can spread the disease to family and friends when they return home, including the especially vulnerable elderly.

In spite of decades of warnings from health care professionals that the next pandemic was not a question of “if” but “when,” we failed to heed their warnings and failed to prepare. We now must pay that price.

When AIDS emerged among gay men in the early eighties, it wasn’t long before unsafe sexual practices were being identified as a chief source of transmission. Much of the unsafe behavior was taking place in San Francisco’s bathhouses. Those who called for the closing of the bathhouses were accused of being homophobic and enemies of gay rights. Local politicians were too timid to challenge the power of gay rights activists and the powerful bathhouse owners. Eventually, the bathhouses were shut down. By then, the disease was already out of control.

Bathhouses weren’t the only businesses in denial. Blood banks failed to screen blood donors early in the epidemic, even as evidence showed the virus was being spread through blood. Hemophiliacs were early victims when infected plasma donors spread the virus though Factor VIII, a treatment used for clotting blood. As with the politicians too timid to close the bathhouses, the blood and plasma industries were afraid of offending gay activists.

Look for the helpers

Many of us are familiar with this quote from Fred Rogers:

“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of “disaster;” I remember my mother’s words, and I am always comforted by realizing that there are still so many helpers—so many caring people in this world.”

The bright spot in the similarities between COVID-19 and AIDS are the helpers who have stepped up to the challenge and responded with compassion and love. During this pandemic, they include the doctors, nurses, and other medical technicians who are treating patients while risking contracting the disease themselves. They are the essential workers that can’t stay home. They stock the shelves and bag the groceries at our supermarkets, as we cue up in long lines, keeping our physical distances, waiting to get inside and shop. They are the undocumented farmworkers who get those crops to market. They are the caretakers of the sick, elderly, and disabled. They are the neighbors entertaining each other from opposite sides of the street, singing from the balconies, and applauding en masse in the evening for the medical teams treating the disease.

In the time of AIDS, when no one else cared, the gay community learned they needed to care for each other. They created social service organizations and educational campaigns. The Shanti Project, a recently created organization for counseling those at the end of life, found new purpose, serving those dying of AIDS. In New York, writer and activist Larry Kramer cofounded the Gay Men’s Health Crisis and wrote a play on AIDS, The Normal Heart. The gay community was not only caring for each other, but convincing heterosexuals to start caring, as well.

AIDS hit the Bay Area especially hard. I doubt there is any person here who does not know at least one person who has died of AIDS. My first knowledge of AIDS coming to my neighborhood was the death of a nurse who lived around the corner. I hardly knew him, and I didn’t know he was gay. Then, a former housemate died a few years after moving to another part of town. I shouldn’t have been surprised. She was an alcoholic and and a drug user. I don’t know if she was injecting drugs, but her immune system was surely compromised by her drug abuse. Ironically, her bisexual boyfriend remained HIV negative. He may even be alive today. I have not seen him in a couple of decades. When I decided to return to college in the early nineties and earn my bachelor’s degree, one of my classmates was a lovely man named Micah who was one of the cofounders of the Radical Faeries. I would visit him in his Haight Ashbury apartment and watch him treat his Kaposi’s Sarcoma lesions. He did not live to see the end of the spring semester. I returned to the Haight Ashbury apartment to attend his memorial. We sat in a circle, passing around the urn that held Micah’s ashes. Placing our fingers gently into the ashes, we said our goodbyes.

As I write this, there are over thirty cases of COVID-19 in Berkeley and no deaths. News of the first case came in an email from Berkeley’s mayor Jesse Arreguin. I was checking my phone as I was serving as a poll worker in the California primary election. A few acquaintances of mine across the country may have the virus. They don’t know because they can’t get tested. Will closer friends and family of mine become infected? That appears to be another question of not “if” but “when.”

Postscript 

As I was rereading And the Band Played On, I was struck by volume of AIDS history that has happened since the book was published. Randy Shilts died of AIDS in 1994 at age 42. His funeral was protested by the homophobic Fred Phelps and his Westboro Baptist Church. Like others on the Religious Right, Phelps and his followers believe AIDS is God’s punishment of gay people. The church would gain more attention when it started picketing the funerals and burials of soldiers who died in the Iraq and Afghanistan wars. The protests provoked a debate on the limits of the first amendment.

When the book ended, the virus was finally given the term HIV after months of fighting between French and American researchers over who actually discovered it. In the last pages, AZT is identified as a possible treatment. The famous AIDS cocktail drugs were yet to come. Those drugs are now allowing those who are HIV positive to live normal lives. It is now possible for those with HIV to die of old age and from an unrelated illness. In addition, we now have PrEP which reduces the risk of infection from HIV.

Another controversial drug that emerged to treat AIDS patients was marijuana. Advocates of medicinal marijuana had previously touted it as a treatment for glaucoma. Now AIDS patients were viewing marijuana as a pain reliever, including for the nausea caused by chemotherapy. Loss of appetite was a common symptom of AIDS, and marijuana was found to be an appetite stimulant. In San Francisco, Mary Jane Rathburn became an unlikely hero. Famously known as Brownie Mary, she served pot-laced brownies to AIDS patients. She was actually one of a number of pot bakers, including Sticky Fingers Brownies, recently featured on KQED’s California Report Magazine. https://www.kqed.org/news/11810441/home-baked-how-pot-brownies-brought-some-relief-during-the-aids-epidemic . Activists like Rathburn and Dennis Peron were instrumental in the campaign to get marijuana legalized for medicinal use. We now have legal pot for both medical and recreational use.

Larry Kramer, cofounder of the Gay Men’s Health Crisis (GMHC) and author of The Normal Heart would go on to found the activist group ACT UP (AIDS Coalition to Unleash the Power.) Known for their In-Your-Face activism, ACT UP members staged protests, such as die-ins in public places. Their protest at St. Patrick’s Cathedral, protesting the Catholic Church’s opposition to condoms, were among their most controversial activities. Kramer’s and ACT UP’s lobbying of the FDA resulted in the streamlining of the approval process for drugs to treat HIV/AIDS. Kramer’s play would be followed by more dramatic and artistic works on the subject of AIDS, including Tony Kushner’s Angels in America.

Cleve Jones, who is a prominent figure through most of the book, would go on to national fame with his creation of the Names Project. The AIDS quilts created by the Names Project have been displayed all across the country, including on the National Mall.

After Shilts’ book, the struggle for gay and lesbian equality took on new dimensions as transgendered people demanded inclusion. The movement took on the letters LGBT. Shilts’ followup and last book, Conduct Unbecoming, chronicled the movement of gays and lesbians to serve openly in the military. Bill Clinton campaigned for president on the issue, and the resulting compromise passed by Congress was called “Don’t Ask, Don’t Tell.” Barack Obama would later campaign against that compromise, and, ultimately, LGBT people were able to serve openly in the military.

In 1989, the San Francisco Examiner ran a special edition on the twentieth anniversary of the Stonewall Riots. As part of that edition, the Examiner conducted an extensive opinion poll on the public’s attitudes on LGBT rights. They found a majority of the public was very supportive, except in one area, marriage. People were overwhelmingly opposed to legalizing same sex marriage. Conservative Republicans ran on the issue, enacting state laws and even a national law called the Defense of Marriage Act or DOMA. Through much of the last century and into the current one, Democrats who even supported civil unions were on record opposed to same sex marriage. Gays and lesbians started fighting back. A movement that once asserted its right to have anonymous and promiscuous sex was now demanding legal recognition for monogamous relationships. President Obama “evolved” on marriage equality and won his reelection. The battle went to the Supreme Court, and DOMA was overturned thanks to another unlikely hero, an elderly, lesbian named Edith Windsor. Soon, full marriage equality would become the law of the land. 

A follow up to Shilts’ book would be a valuable contribution to not only the continuing history of HIV/AIDS, but to the change of attitudes leading to LGBTQ (yes, we have added “queer” to that alphabet) equality. Maybe an enterprising journalist will take up the project where Randy Shilts left off.

April 7, 2020 - Posted by | Uncategorized | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

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