As I recently waited to get the latest COVID-19 booster and flu shots at my local pharmacy, I found myself thinking about how much has happened in the four years since the start of the COVID-19 pandemic. 

There was the lockdown in March 2020, the endless Zoom calls, then-President Donald Trump rambling about somehow injecting bleach or bringing sunlight inside the body to fight the virus, online conspiracy theories, political battles over masking mandates and many other jarring events.

I remembered my first COVID shot in a very quiet and solemn setting — then catching the virus months later but being down for only a couple of days as my vaccine-prepped immune system fought it off. 

“Are you Mel Baker?” a voice asked.

I snapped back to the present, in the Walgreens aisle next to the cough drops. The pharmacy technician escorted me quickly into a little side room, I rolled up my sleeve and he gave me the shots. Then he was done and gone, without even signing my vaccination card — such a vital document during the pandemic and now it was not even an afterthought. 

The card might be an apt symbol for how San Francisco, and possibly most of American society, is now treating COVID-19. It seems that we’ve pushed the pandemic into the collective “memory hole” — a place where those thoughts, feelings and traumas can be dropped, comfortably out of sight. We want to move on. That may help explain why only 69% of people in the United States finished their primary vaccine series, and just 17% got all of the boosters, according to 2023 figures from the Centers for Disease Control and Prevention.

I think it’s important to look back and reflect. We have to reckon with the loss of life and the loss of trust in public institutions in order to prepare for the next pandemic. 

“Civic” and the San Francisco Public Press are working on stories about people living with long COVID.

Do you have a story to tell? Please contact us at radio@sfpublicpress.org.

It should not be so easy to forget that nearly 1.2 million people in the nation have died from COVID-19. Almost 7 million required hospitalization. Millions more live with the symptoms of long COVID. 

But this also wouldn’t be the first time that society has responded to great loss by putting something down the memory hole.

Survivors of the 1918 Great Influenza were quick to put it behind them, some historians say, and it is all but forgotten today. Only a tiny memorial in the Hope Cemetery, in Barre, Vt., marks the loss of at least 675,000 people living in the United States, when this country had about one-third of today’s population. Then, as well, there were fights over mask mandates and social distancing, though no vaccines to slow the flu’s spread. 

Many people also wanted to forget about the HIV/AIDS pandemic after new drugs made it possible for them to live with the virus. But some survivors want to remember, in order to heal from the trauma. 

In 2014, more than three decades after HIV and AIDS ripped through the country, Greg Cason started the program “Honoring Our Experience.” It brought together people who had lived through the pandemic so they could process the experience. 

“There was something powerful about creating a space for that community of people,” Cason told me. They realized the AIDS pandemic had given them “a unique and profound experience that only they would understand.”

Kristin Urquiza co-founded the group “Marked by COVID,” which helps people memorialize those who died so that society does not forget. The group is trying to have a permanent monument to the pandemic placed in Washington, D.C. 

Urquiza was inspired by activists who used the AIDS Memorial Quilt to personalize the dead and force a better government response. 

For her father, the desire to move on had deadly consequences. 

“He got sick early on in the pandemic, in the summer of 2020, right after the state of Arizona re-opened,” she said, referring to his COVID-19 infection. “The governor at the time was basically spreading misinformation that it was safe to resume normal activities.” 

“I think that the need to commemorate and memorialize allows us to move past the divisiveness and the politicization of COVID,” Urquiza said. She added that doing so is necessary to prepare for whatever comes next. 

Dr. Monica Gandhi agrees. She is the author of the book “Endemic: A Post Pandemic Playbook.” The term “endemic” applies when a disease becomes ever-present in a population. 

Today, the greatest threat to public health is the lack of trust in government institutions, she said. That’s in part a consequence of the shifting, confusing guidance that U.S. health agencies gave in response to COVID-19.

“We have the vaccine, take it, but you’re gonna need booster after booster,” she said, recalling the government’s guidance. “And oh, by the way, we’re not gonna let you go back to a normal life.” 

The U.S. government’s messaging was also in stark contrast with how it had handled the AIDS pandemic decades prior, when new drugs made the disease manageable for most people in the mid-1990s.

“We got these biomedical advances like protease inhibitors and life turned around” for the people who took them, Gandhi said. At the time, people celebrated a return to normalcy.

Her book contains a list of recommendations for the next major outbreak: 

• The government must spring into action to develop and distribute vaccines, especially to low- and middle-income nations. 
• Pharmaceutical companies should develop antivirals and other therapies to treat the infected, similar to the prescription drug Paxlovid and the infusions of monoclonal antibodies — laboratory-produced proteins intended to stimulate the body’s immune system — used to battle COVID-19. 
• Celebrate medical advances by easing restrictions, when possible. 
• Avoid what she calls “medical rituals,” like cleaning groceries with bleach or taking temperatures at airports. 
• Keep public parks and playgrounds open to avoid isolation and get people out of buildings where respiratory viruses are more likely to spread. 
• Re-open schools as soon as possible, especially after teachers have been vaccinated, to avoid learning loss and social isolation among children. 

“In this era of global warming and everything else, we’re going to get another pandemic,” Gandhi said.

Read a Q and A with Dr. Gandhi about how she and her colleagues reacted to the greatest pandemic in a century in our Reporter’s Notebook piece, “The Epidemic She Didn’t Expect to See.”

The post Reporter’s Notebook: To Prepare for the Next Pandemic, Let’s Not Forget the Last One appeared first on San Francisco Public Press.

Four years out, this seems like a good time to look back and reflect on those days. I’ve been working on a “Civic” episode to examine what we’ve learned so far about the COVID pandemic, what we could have done better back in 2020, and what we failed to learn from earlier pandemics, such as HIV/AIDS. That work will be published this spring as part of our current season of “Civic” podcasts. 

As we near the lockdown anniversary, I want to share part of an interview I did with Dr. Monica Gandhi, author of “Endemic: A Post Pandemic Playbook.” She is a professor of medicine and associate division chief of HIV, infectious diseases, and global medicine at UCSF and Zuckerberg San Francisco General Hospital. She also serves as the medical director of the HIV Clinic at San Francisco General Hospital’s Ward 86.

Mel Baker: Can you think back to those first few days when the news was coming out of Wuhan and this looked like it might be a pandemic?

Dr. Monica Gandhi: So, all of the division of infectious disease and the entire Department of Medicine here at San Francisco General were crowded into our auditorium, terrified and listening to updates from Wuhan, China. We met again when we thought that there was the first case of community transmission in San Francisco. It was two days later that the shelter in place orders came down from the San Francisco Health Department because there was community transmission. 

I remember feeling faint. I didn’t think I’d see a pandemic like this in our lifetime. I was so much more familiar with HIV, but this was so unknown. Watching anything from New York was so hard and so sad. So, yeah, it was a feeling of incredible shock. And I just felt dizzy really all the time.

Baker: It must have been like, you’ve trained all your life for this moment — and here it is. One of the astonishing things you say in your book is that the numbers initially coming out of Wuhan were between 1 and 10% fatality. I remember reading a story claiming 5% mortality and sharing it in a San Francisco Public Press staff meeting — we were all on Zoom of course — and I said, “5% — you realize what that means? I mean, that’s like civilization-destroying!” If it had been 10%, the potential would have been full societal collapse.

Gandhi: You’re right. Anything with some mortality rate like 10% would be incredibly devastating and would resemble what happened in 1918 with the influenza pandemic. 

(Reporter’s note: Recent estimates for the 1918 influenza pandemic range from 50 to 100 million deaths worldwide, when the global population was about 1.8 billion people.) 

I was interested in writing this book, in a way, because I want us to have more trust in public health. A lot of this book is about increasing trust. God forbid we get another pandemic that is spread through droplets and respiratory secretions. If it has a very high mortality rate like Ebola does, we would literally have to go crazy [with public health measures.]

(Reporter’s note: The World Health Organization cites Ebola death rates of up to 90% without treatment.)

Part of the reason I waited to publish this book until COVID was declared, quote “over” — and it’s never over, but over in the pandemic sense — was to say, okay, these were the mistakes made. These were the ways that we did good things, like really fast technological advances, biomedical advances, vaccines, therapeutics. Let’s put it all together, and let’s build up our trust. Because we have no idea what the next pandemic will be. 

Baker:  There are plenty of viruses on the horizon that could potentially become pandemics. Are you hopeful that our ever expanding toolbox of vaccines and drugs will be enough for us to manage the next one? 

Gandhi: I’m profoundly hopeful about vaccines. So, I’m really hopeful how fast the vaccine got developed. I was floored. You know how I said I was feeling faint and dizzy at the beginning of the pandemic? It was around Nov. 4, 2020, when the first positive results came back, and I was elated. That day was like my birthday. I remember just feeling like wait, it took this long? This is not that long! 

So, I’m very hopeful about our technology, about how we can produce really effective vaccines and treatments quickly and well. That’s why I really do want people to start trusting doctors and public health people more, even though everyone’s tired of the pandemic right now.

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Like the rubber stamp recently discovered by Liana Wilcox, producer of the San Francisco Public Press’ podcast “Civic,” when she was helping her mother clear a storage area.

“I was with my mom going through some of her keepsakes and found a stamp that read ‘Lesbian Money.’ My mom told me that she found it in our old church’s basement,” Wilcox said, adding that she feared the rubber stamp had a sinister connotation.

“I immediately thought it was some sort of exclusionary practice, but that didn’t feel right considering the church we went to, the First Congregational Church of San Francisco, called themselves ‘open and affirming,’” she said.

Wilcox mentioned the stamp during one of our staff meetings, and I said “Oh, no that was a way we tried to raise awareness about the LGBT community back in the old days.” 

As a young gay activist and budding journalist in Salt Lake City in the early 1980s, I vaguely remembered stamps like that one. I reached out to a dear friend to see if she remembered lesbian money. 

Becky Moss is a longtime LGBTQ+ community organizer in Salt Lake City. She and I co-hosted the radio show “Concerning Gays and Lesbians” in Utah in the early ’80s. Moss said activists around the U.S. were stamping bills to show the financial power and size of the greater queer community back in the late 1970s. 

“Separatist lesbian communes would stamp all of their bills before coming into town for supplies,” she said. “But I remember it being more widespread than that, it was really a nationwide thing.” 

A number of sources trace the first “Gay$$” and “Lesbian Money” stamps — sometimes marked with a pink triangle — as having originated in San Francisco in the mid 1970s. The pink triangle was used by the Nazis in Germany to identify gay men in concentration camps and was co-opted as the symbol of the early gay movement before the rainbow flag mostly supplanted it. 

Wherever the money stamping started, by 1986 it had drawn the ire of the Reagan Administration. The U.S. attorney for the Northern District of Illinois issued a cease-and-desist order to lesbian and gay bar owners in Chicago who were stamping all the bills coming through their businesses to the tune of $5 million a year. Government officials said the campaign violated federal law against defacing currency. But the legal action foundered at least in part because it was nearly impossible to determine who was responsible — anyone could stamp bills, anywhere. The Treasury Department also determined that most of the bills were still “fit for circulation.”  

Money stamping campaigns grew quickly to the point that finding some kind of queer stamp on currency was fairly common in the 1980s. It made an impact in an era when LGBTQ+ representation in film, television and the press were rare. 

Campaign Against Discrimination

Money stamping campaigns were also used to counter discrimination against people with HIV and AIDS in the 1980s. One campaign out of Utah unfolded when Moss visited a restaurant in a suburb of Salt Lake City in the late 1980s. 

“My sister, who had AIDS, and I were at a restaurant in Bountiful, Utah,” she said. “After the meal, the staff threw our plates in the garbage.”

The Salt Lake City branch of ACT-UP, the AIDS activist organization, decided to use an “AIDS Money” stamp to fight such blatant discrimination against those perceived to be infected with HIV.

“They all went to the restaurant and bought things like pie or french fries and then paid for them with the stamped money,” Moss said. “The activists made the point that the owner would now have to throw away all the plates used to serve them or stop the practice.” 

“AIDS Money” stamps remained part of the nationwide effort to raise awareness through the 1980s and ’90s. 

Becky’s sister Peggy Moss Tingey died of complications from AIDS in March 1995, just nine months after her young son Chase died from the virus. Both passed away just before the HIV protease drug cocktail was starting to become available. 

Other Stamping Activism

Recent money stamping campaigns included “I grew hemp” stamps, promoting marijuana legalization, placed on $1 bills near George Washington’s portrait. The idea was taken up by groups advocating for the Second Amendment — “gun owners money” — and even campaign finance reform, with the Ben and Jerry’s Foundation organizing “stamp money out of politics” stamps in 2012.

A campaign in 2016 used large stamps to place Harriet Tubman’s face over the $20 bill portrait of Andrew Jackson, after the Trump Administration overruled the Treasury Department’s plan to replace Jackson with Tubman by 2020.

While the LGBTQ+ movement used stamping to great effect, it was by no means the first to spread the word by customizing currency.

Before World War I, British suffragettes stamped pennies with the words, “Votes for Women.” Only a handful of the coins still exist. But just as the U.S. Treasury Department declined to withdraw bills with “Lesbian Money,” the British banking system declined to take the low-value marked pennies out of circulation.  

Without suffragettes breaking the first chain of patriarchal thinking by winning the right to vote, there would have been no LGBTQ+ rights movement. Discrimination against women — sexism — is the basis of hatred of different sexual orientations and gender identities.

Both the British women who had to strike each penny 13 times — engraving their words letter by letter — and those who inked rubber stamps over and over again used their spending power to wear down conspiracies of silence, one tiny message at a time.

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The AIDS Memorial Quilt was unfurled recently in San Francisco’s Golden Gate Park for its largest display in a decade, marking the start of a campaign to educate the public about a disease that, since 1981, has infected 1.2 million people nationwide. 

While new HIV infections in the United States have been in decline, the disease continues to take a disproportionate toll on racial and ethnic minorities, men who identify as gay or bisexual, and other men who have sex with men. The highest rates of new infections and numbers of untreated people are found in the South. 

Organizers estimated that 20,000 people visited the San Francisco quilt display June 11 and 12. This fall, sections of the quilt will be taken on a tour of the South for “large displays in city centers, as well as smaller displays in rural, non-metro areas,” said Dafina Ward, executive director of the Southern AIDS Coalition. New names will be added to the 35-year-old quilt during the tour, she said.

“There will be panel-making workshops all over the south,” she said. “It’ll be an opportunity to display quilts that feature members of the communities where we’re touring, particularly Black and brown folks who we know are not as strongly represented in the quilt as we would like for them to be.”

She believes the southern tour could provide healing for those dealing with all kinds of trauma. 

“I think the quilt can even hold a different type of significance for people as we’re dealing with COVID and all the other things that we are really fighting through together,” she said. “So, I think it’ll be a space for grieving and I’m hoping it’ll also be a space for healing.”

Explore images by clicking through the viewer above. All photos by Yesica Prado/San Francisco Public Press.

Need for resources in wake of pandemic

The COVID-19 pandemic forced health care providers across the country to focus on battling that disease, shifting resources away from other public health priorities such as HIV care. 

A recent “Civic” episode — “While SF Fought COVID, HIV Prevention Stalled” — explored how the need for directing public health attention to COVID over the last two years has led to a rise in new and untreated HIV infections in San Francisco. 

The decline in HIV care and prevention was especially pronounced in the South, where Ward said HIV testing fell by half during the pandemic. 

“We surveyed over 100 community-based organizations in the South that are serving sexual and gender minorities, or folks living with HIV, and 96% of them reported that their service delivery was impacted by COVID,” she said. 

The organizations also saw huge increases in need for mental health care and food services, Ward said. 

“Wherever a person comes and knocks on the door for help, they should be able to get access to everything that they need,” she said. “And that approach is called the ‘no wrong door’ approach. I think that has to be the standard and best practice for us in HIV.”

During opening remarks at the unfurling in San Francisco, Ward spoke about how the quilt brought the unacknowledged HIV crisis to Washington D.C. in 1987, and how it can play a role in bringing attention to HIV and AIDS again today. 

“So, what we hope to do in the South, to bring our dead to the statehouse lawns — where they continue to violate the rights of communities, to ignore the injustice by refusing to expand Medicaid, criminalizing people for living with HIV, punishing educators for saying the word gay,” Ward said. 

She invited people from across the country to join the effort. “The Southern AIDS Coalition is regionally based, but we are nationally needed,” she said. “We will not end the HIV epidemic in this country if we don’t end the southern HIV epidemic.”

Harold Phillips, director of the White House Office of National AIDS Policy, applauded plans to take the quilt to the places it’s most needed. He told “Civic” that the Biden administration is committed to funding HIV programs, including PrEP — the commonly used term for pre-exposure prophylaxis — to reduce new infections. 

“President Biden, in the fiscal year ’23 budget request, has called for a national PrEP program, especially for those uninsured and underinsured,” he said. (Learn more about the administration’s AIDS policy plans in our Q-and-A with Phillips.)

Adding the last panel

Cleve Jones, one of the AIDS quilt project founders, spoke about the anger and rage he felt in the 1980s, and why it was so important to bring the quilt to Washington in 1987 during the March on Washington for Lesbian and Gay Rights. 

“My heart was full of anger, hate, fear and despair,” he said. “All my friends were dying. The government did nothing. Our churches kicked us out. Our families abandoned us. It seemed that the world was totally unwilling to look at what was going to happen.” 

Jones said the quilt helped change attitudes, and the idealism that inspired it saved his life. 

“When I was dying of AIDS, ACT UP stormed the NIH, confronted the FDA and got the medications released that saved my life,” he said. “So, when I tell you that the movement saved my life, that’s not rhetoric. It’s not hyperbole, it’s the truth. It saved my life. It can save your life. It can save this country. It can save this planet.”

The quilt was born in a storefront in San Francisco’s Castro District in 1986 and was moved to a warehouse in Atlanta in 2000, before returning to the Bay Area in 2020. Learn more about the quilt’s history and its new home in San Leandro in the “Civic” episode “Pandemic and Protest,” from June 2020.

Kevin Herglotz, CEO of the AIDS Memorial Grove, which manages the quilt, said the plan is to build a home for the quilt as part of a center for health and social justice in San Francisco, possibly near the AIDS Memorial Grove in Golden Gate Park. 

“This quilt has to be protected,” he said. “It has to be conserved and preserved and made available to the public.”

The quilt is made up of more than 50,000 panels — each a personal tribute to someone who died of AIDS — with hundreds more added every year. 

“We want to see a day when there’s no more quilt being made,” Herglotz said. “When we have the last one, there’s a panel that’s been made that hangs in the warehouse that says ‘the last one.’ We want to put that one in the quilt. When it’s the last one.”

The post After SF Visit, AIDS Quilt Heads to South to Raise Awareness appeared first on San Francisco Public Press.

The response is led by Harold Phillips, director of the White House Office of National AIDS Policy, who is a long-term survivor of the virus — defined as someone infected before the HIV drug cocktail deployed in the mid 1990s made it possible for most people to live with HIV as a chronic disease.

The San Francisco Public Press spoke with Phillips this month when he came to San Francisco to participate in events tied to the display of the AIDS Memorial Quilt in Golden Gate Park.

The following interview has been lightly edited for length and clarity. 

Mel Baker: In San Francisco during the COVID pandemic, we backed off on our HIV care, both prevention and services for those with HIV. (Learn more from this recent “Civic” episode: “While SF Fought COVID, HIV Prevention Stalled.”) Is that something that the administration is noticing around the country? And is there a policy plan to deal with that? 

Harold Phillips: Yes, we’ve noticed that a lot. Some, because of our already strained public health system, during the pandemic. So, they stopped some of the HIV work. We’ve seen decreases in the number of HIV tests conducted across the United States. We also saw people fall out of HIV care, including some of our long-term survivors. With social distancing, a lot of services had to move to telehealth, which didn’t necessarily work for everybody. If you’re in a rural area where you got poor internet service, that didn’t work too well either. 

One of the things that President Biden has done is called for us to accelerate our HIV efforts. He released a new national HIV/AIDS strategy on World AIDS Day last year.

We are also linking to our prevention options, which — we’ve got a number of them — including long-acting injectables, and PrEP for those who are at risk, but not HIV positive. (Editor’s note: PrEP stands for “pre-exposure prophylaxis,” in which an HIV drug used for treating the virus is given to someone who isn’t infected to prevent them from becoming HIV positive. With no effective vaccine against HIV infection, PrEP is the most effective way to prevent new infections, especially when combined with safer sex practices.) 

We’re hoping to refocus the conversation and our efforts around HIV. COVID is here for a while. So, we’re learning to live with it, and living with it means we’ve got to also focus on HIV and other sexually transmitted infections.

Baker: Regarding injectables: They’re very expensive. Is there an administration policy to make sure that things like Medicare pay for these drugs and an effort to push states to make sure their Medicaid programs cover them, especially for people that have difficulty maintaining a daily pill regimen? (Editor’s note: Injectables are new HIV drugs that can be injected into a person’s muscle tissue, which allows them to be slowly released into the bloodstream over a matter of weeks, eliminating the need for daily pills.)

Phillips: Absolutely. Working with Medicaid, Medicare, as well as working with private insurance covering the cost of long acting injectables, and changing our policies. President Biden, in the fiscal year ’23 budget request, has called for a national PrEP program, especially for those uninsured and underinsured. We will not only be covering the medications, including injectables, but also covering services for those that need to access PrEP, need to become more aware of PrEP, and also reminders, patient navigators to help keep people on PrEP, transportation services for those who need help and assistance getting to the clinic. 

This July we acknowledge 10 years of having PrEP as an HIV prevention tool. And we’re still working on programs that help people really become aware of PrEP, and maintain access to the medications.

Baker: What about programs for research and such? You know, we’ve always heard that we’re “just 10 years away from a cure” for three decades now. Is there any extra money being put into research that might cure those infected? 

Phillips: Yes. The NIH (National Institutes of Health) is continuing to do work on a cure and a vaccine. I think it’s been at least documented and well known that our ability to find the COVID-19 vaccine is a result of decades of HIV research toward a vaccine. So, now that we’ve sort of got COVID-19 vaccines under way, our research scientists involved in vaccine research for HIV have also learned a lot from that sort of effort. And now they’re turning their attention and refocusing our efforts for an HIV vaccine and also a vaccine cure. 

Dr. Fauci talks about this as well. It’s still hopeful that we can get there, we’re learning so much. Our medications are much better than they were 35 years ago as we sort of commemorate the anniversary of the quilt today. We’ve come so far. And they’re continuing to work with a lot of the AIDS research that’s going on as well. And there are additional investments on the federal government’s part in that too. (Editor’s note: Dr. Anthony Fauci, who prominently guided national response to the COVID-19 pandemic, has long been a key figure in HIV and AIDS policymaking as director of the NIH’s National Institute of Allergy and Infectious Diseases — a position he has held since 1984.)

Baker: One of the most difficult things to get out of Congress is federal funding to help other countries with HIV care and prevention. How has the Biden Administration continued that effort that began during George W. Bush’s administration? (Editor’s note: According to HIV.gov, in 2020, there were 20.6 million people with HIV in Eastern and Southern Africa, 5.7 million in Asia and the Pacific, 4.7 million in Western and Central Africa, and 2.2 million in Western and Central Europe and North America.)

Phillips: Absolutely. President Biden has pledged his continued support for our PEPFAR program — the President’s Emergency Plan for AIDS Relief. Our first lady, just about a month ago, announced the historic investment in HIV care, treatment and prevention for the country of Panama. Our new global AIDS ambassador has just started work. So, we’re really excited to have him on board, that will also continue to work. 

Currently, under PEPFAR, we’ve got 21 countries across the world — some in Africa, some in Asia — that have reached epidemic control. And that means that 90% of the people with diagnosed HIV in those countries are virally suppressed — meaning they can’t pass it on to their sexual partners. So, with 21 countries already around the world who have reached epidemic control — here in the United States we’re at 67%, so we’ve got a lot of work to do. But I think the lessons learned from some of those other countries is that we can do it. It can be done. It’s achievable. And I’m very hopeful that the United States will get there.

Baker: It seems the injectables will be the next stage in trying to do that, since people can go as much as two months between an injection.

Phillips: Yeah. And the pharmaceutical companies as well as our researchers are looking at, how do you extend that? So, right now we’re at sort of four to six weeks, they’re looking at even longer, including once a year. So, that’s going to be another tool that helps us get there, both for those living with HIV and those that are at risk of infection.

Baker: The majority of HIV patients in the United States are 50 years and older. Is there enough funding to make sure that people that didn’t have enough resources to prepare for retirement are going to be able to get a little extra care?

Phillips: So, this is something that we’re looking at. Our new national strategy talks about those who are over 50, as well as elderly living with HIV. I think we’re still figuring out what that all means, and what sort of services will individuals need that are different. And how do we do that?

It’s going to take a “whole of government” effort to look at this. Luckily, the Administration for Community Living, which handles senior services in America, are on board and have mandated that people living with HIV be included in state aging plans. So, that’s the first step to really look at and better understand: What are the resources that are needed at the community level, for people who are aging with HIV? We’re also looking at quality of life for people living with HIV. And we know the definition of quality-of-life changes as one ages. So, things like social isolation, housing status, employment status, physical abilities. Also, how do we measure all of that, in addition to clinical and medical well-being, which we’ve been doing for a while. 

It’s a point in the history of the epidemic in our country that I don’t think we really thought about 40 years ago. I think we’ve got a lot of work to do, including training our medical professionals on how to take care of people living with HIV who are over 50 — things like bone density frailty assessments. Also, in services so that we can still be our authentic selves as we age and maybe go into a senior living facility. Something to celebrate living with HIV and reaching these milestones. 

Baker: Why did you come out to see the AIDS quilt? Why was it important to have a representative of the administration here?

Phillips: The AIDS quilt plays an important part in our history of HIV for this country. It is a symbol of both those that we have lost and loved. But it’s also a symbol of hope. And it’s got an incredible power to unite us and bring us together to hear the stories of those we’ve lost. And to remember them is important, because it also helps to break down stigma. Part of what President Biden has called for is that we addressed HIV stigma and HIV criminalization, which still exists in a number of states. So, it was really important to be here to represent Washington D.C., represent the Executive Office of the President, and also people living with HIV.

The post Biden Administration Refocuses National HIV Response appeared first on San Francisco Public Press.

Over the past several months, health care providers have been warning San Francisco officials that while the city was focused on fighting COVID-19, rates of HIV infection and related illnesses were creeping in the wrong direction.

From the very beginning, and throughout the HIV epidemic, which began in 1981, San Francisco led the way in prevention, care and treatment that came to be recognized around the world.

But that reputation is lagging, according to HIV activists and health care professionals in San Francisco, where more than 15,800 residents live with HIV. On March 21, dozens of HIV survivors, activists, politicians and health care providers held a die-in rally on the steps of City Hall to draw attention to the suffering among one of the city’s most vulnerable populations.

“We have people dying from HIV,” said a speaker named Junebug. “This is a reality. We can’t be silent. And sometimes you feel trapped and stigmatized. And even though it’s 2022, ignorance is so real. But how do we fight ignorance? Well, one way is we’re going to break the silence.”

Rally co-organizer Michael Rouppet, executive board member of the Harvey Milk LGBTQ Democratic Club, said that the San Francisco Department of Public Health’s 2020 HIV epidemiology report revealed the need for renewed efforts in the fight against HIV.

“I’m a long-term survivor with HIV,” Rouppet said. “We’ve survived, now, two pandemics. And what we’re seeing happening with the recent epidemiological report is that San Francisco is losing the opportunity to be a trailblazer.”

In 2016, the city launched an initiative called Getting to Zero with these goals: zero new HIV infections, zero HIV deaths and zero HIV stigma by 2025. The strategy calls for three initiatives. The first is expanding the awareness about and use of pre-exposure prophylaxis — aka Prep — a daily pill that reduces the risk of HIV infection by 99%. The second is Rapid — the Rapid ART Program Initiative for HIV Diagnoses — which allows newly diagnosed HIV patients to quickly access antiretroviral therapy through several clinical hubs around the city. The third focuses on retention — making sure patients with unstable housing or mental health issues, or who are suffering from addiction, still regularly engage in HIV care and treatment.

The strategy was showing signs of success every year. By 2019, the Department of Public Health’s Annual HIV Epidemiology Report revealed that new HIV diagnoses had dropped to a record low of 166 — down 19% from the previous year. Nearly all the cases were linked to care within a month, and 78% were virally suppressed within six months after receiving a diagnosis.

This is important because high viral loads can lead a patient to progress to AIDS. Virological suppression means that the amount of HIV in the body is minimal enough to keep the immune system working and to prevent illness.

But that viral suppression trend began reversing course during the COVID-19 pandemic, said Dr. Monica Gandhi, director of Ward 86 at Zuckerberg San Francisco General Hospital, one of the oldest HIV clinics in the country.

The number of virus-related deaths had been consistently declining until last year when it rose to 160 from 137 the previous year. That reversal may be linked to the shelter-in-place order issued on March 16, 2020, Gandhi said. It meant that in-person care was converted to telephone medicine. And for patients who have substance use issues or are marginally housed, finding a quiet, private space to call a health care provider can be challenging.

Prior to the pandemic, 75% of city residents with HIV were virologically suppressed. That went down to 70% during the pandemic. And among the homeless population, it fell from 39% to 20%.

“We saw a lot of people being admitted to the hospital with opportunistic infections and who were quite ill because their viral loads were up and subsequently their T cells were down,” Gandhi said. “So, the slippage was very obvious.”

Higher viral loads can also lead to higher rates of HIV infection in the community. It remains to be seen whether the rate of infection has gone up because testing rates plummeted by nearly half during the pandemic.

“I will say, anecdotally, we’ve seen a lot of new diagnoses at Ward 86,” Gandhi said. “Many of these new diagnoses are in women and populations that we haven’t seen so much before. And so now, only with systematic testing, will we know the impact of transmission.”

CORRECTION 06/02/2022: Deletes incorrect reference to Hepatitis C at top of story.

The post While SF Fought COVID, HIV Prevention Stalled appeared first on San Francisco Public Press.

Editor Cynthia Laird told “Civic” that type of coverage began surprisingly early. “While it kind of started out as a gossip rag, it quickly pivoted to covering gay news,” she said. “We ran a cover — I think it was our fifth issue — of people picketing in front of the federal building, holding signs like Gay Rights Now.”

Publisher Michael Yamashita said that over time, the newspaper developed a greater commitment to journalism. “There was a concerted effort to professionalize the reporting to hire people who actually had journalism backgrounds and degrees and experience in media.”

The newspaper went on to chronicle the rise of lesbian and gay political activism in the 1970s. The era would see the successful statewide battle to defeat the Briggs Initiative, which would have banned lesbian and gay teachers from the classroom, and the election of San Francisco Supervisor Harvey Milk, followed by his and Mayor George Moscone’s assassination by former Supervisor Dan White. 

The early 1980s brought the AIDS crisis, when the paper became a source for information on the growing pandemic. Yamashita said the newspaper would publish free obituaries: “We almost always insisted that the obituaries were turned in with a picture. Because a lot of times you would recognize people in the community or in the bars, but not necessarily know their names. We would run several pages of obituaries, which today seems very shocking, but it seemed to be a normal thing: three pages of obituaries at the height of it.”

The Reporter ran a famous headline “No Obits” on Aug. 13, 1998, that marked a turning point in the pandemic when the famous drug cocktail started to reverse the decline of many HIV patients, Laird said.

“I just remember Mike Salinas, the editor at the time, just constantly going downstairs to see if any obituaries had come in,” he said. “We were very careful to point out that it certainly didn’t mean nobody died that week. It just meant that no one had turned in an obituary. And it did give a lot of people hope. It’s probably our most famous headline.”

In the first decade of this century same-sex marriage dominated the paper’s headlines. “We had the state cases and then we had Proposition 8, which we covered extensively in 2008.  That was kind of a bittersweet election, because Barack Obama won the presidency, but gays lost the right to get married in California. It was a very strange election night. But then, you know, of course, that case went through the courts. And ultimately, the Supreme Court restored the same-sex marriage rights for Californians in 2013. And then, two years later, the Supreme Court legalized it nationwide.”

Many of today’s headlines are about expanding the spectrum of issues of concern to those of gender nonconforming individuals and the fight for transgender equality. 

The Reporter began during a time when the movement used the term gay to mean both gay men and lesbians, and now uses the acronym LGBTQ to include a broader understanding of gender expressions and emotional attraction. It has also had to evolve from the age of classified ads, paid print advertising and newsprint to the digital era dominated by social media. 

The paper has continued to publish a weekly newspaper during the pandemic, despite having to lay off an editor and an administrative staff member. 

The newspaper has generated over $33,000 in a public fundraising campaign and begun a monthly membership program. The pandemic has also caused it to try new digital strategies, including a morning newsletter, a YouTube channel and a more robust social media campaign. 

Yamashita said he is also reaching out to other newsrooms. “We’re also collaborating quite vigorously with other publications in the city, in the state, and also LGBT publications nationally,” he said. “So we’re really solidifying our relationships with these different tiers of publications, especially here in San Francisco. Because we found that there’s strength in numbers. We’re also sharing advertising sales, which is something that we should have been doing, frankly, a long time ago.”

“I can’t tell you what’s going to happen to our industry in the future,” he added. “But I really believe that we will survive.”  

A segment from our radio show and podcast, “Civic.” Listen at 8 a.m. and 6 p.m. Tuesdays and Thursdays at 102.5 FM in San Francisco, or online at ksfp.fm, and subscribe on Apple, Google, Spotify or Stitcher. 

The post The First Draft of 50 Years of LGBTQ History appeared first on San Francisco Public Press.

AIDS2020: Virtual, the biennial conference of the International AIDS Society, held in early July, marked a turning point for long-term HIV/AIDS survivors — and not a good one.  

Five of us in San Francisco — Paul Aguilar, Harry Breaux, Vince Crisostomo, Michael Rouppet and I — who have been on the front lines of the fight for our LGBTQ and HIV communities from the very beginning, left the event feeling sidelined and fed up. So, we met to discuss the myriad issues confronted by us long-term survivors.

Over the course of our talks, the need to take concrete action to address the concerns of this group of people, the first to face the ravages of aging with HIV, became clear.

Inspired by the Denver Principles promulgated in 1983, through which people living with HIV demanded self-empowerment and self-determination in all aspects of HIV/AIDS research and treatment (“Nothing about us without us”), the five of us composed the San Francisco Principles 2020. This statement outlines the challenges long-term survivors face and our demands for inclusion, resources and treatment that addresses our specific needs.

We define long-term survivors as men and women who were diagnosed between 1981 and 1996, before the advent of antiretroviral cocktails. We bore the brunt of the AIDS pandemic from the very first. That included multiple traumas, such as:

• suffering the first diagnoses and the unrelenting fear of catching or unknowingly spreading the disease;
• burying our friends, lovers and family members after watching them slowly, hopelessly disintegrate;
• being ignored by public health officials, laughed at by politicians, condemned by religious leaders and ostracized by stigma, even in our own communities;
• putting our bodies on the line as unpaid guinea pigs for pharmaceutical companies and submitting to the first toxic medicine trials and AIDS research programs.

We still live with a form of PTSD (“AIDS Survivor Syndrome”) from all the losses and chaos of the horrendous early days of this pandemic. And we are the ones who set the global standard for compassionate caring for the HIV community. We hope to do the same for the long-term survivor community.

Although people over 50 make up more than half the 36.2 million adults living with HIV worldwide, we are routinely excluded from (or at best, given token representation at) national and international AIDS conferences, and we are nowhere to be found in state, national and international AIDS policies.

While some AIDS service providers, including the San Francisco AIDS Foundation and Shanti, offer programs and services tailored to meet the physical and mental health needs of long-term survivors, those services and programs are scarce and reach only a tiny fraction of long-term survivors. Survivors in rural areas, racial and ethnic minorities, and transgender women and men are especially hard-hit by this lack of services. From the beginning of the pandemic, we have suffered racism, homophobia and transphobia.

Now we are in our 50s, 60s and beyond, living lives we never expected to have. But these lives are riddled with isolation and loneliness, the expense of medications and health care visits, declining physical health, untreated substance use and mental health problems, poverty and unstable housing.

As we age with HIV, we face debilitating physical and mental health effects of aging at an accelerated rate compared to HIV-negative people. We live with an infuriating sense of having been forgotten, shoved to the side by AIDS researchers and service providers, unknown to geriatricians and other health care providers.

The vast majority of AIDS funding is consumed by prevention resources and programs. While we heartily support efforts to end the HIV/AIDS pandemic, we insist that prevention not drain resources for caring for those of us who have lived with HIV for 25, 30, 35 or more years.

We are the AIDS Generation. Nearly everything the world knows about HIV/AIDS has been learned on the backs of us long-term survivors.

And we are determined to be ignored no longer.

With that in mind, we offer the San Francisco Principles 2020 as a starting point. We hope our statement can spark a national and international conversation that effects real, concrete, positive changes in the lives of long-term HIV/AIDS survivors.

Although the Principles have been available online for less than a week, we have already garnered many dozens of supportive signatures from other long-term HIV/AIDS survivors, allies, researchers, service organizations and health care providers in the United States, the United Kingdom and Australia. Soon we will send the Principles to AIDS service organizations, government agencies involved with HIV, elected representatives, and national and international AIDS organizations, demanding implementation of and funding for these principles.

Our movement is young, and our determination is rock-solid.

This Friday, Sept. 18, at noon, we composers of the San Francisco Principles 2020 will be joined in the plaza opposite City Hall by other long-term survivors, health care professionals and members of the San Francisco Board of Supervisors at a press conference officially launching the Principles.

SAN FRANCISCO PRINCIPLES 2020

• There are severe shortages of HIV/AIDS specialists and geriatricians in the US. Given the escalating costs of medical education, the lack of government subsidization for medical education, the lack of respect for and prestige often associated with these specialties by the American healthcare system, and the time and physical demands required by the practice of these specialties, the majority of medical students have gravitated away from these specialties. Therefore, all medical professionals serving long-term survivors and/or older adults living with HIV must be trained in the proper care and to ensure state-of-the-art geriatric healthcare specific to their needs. Providers, especially non-HIV-expert ones, must be made cognizant of the physical, mental, and psychosocial indignities faced by aging long-term survivors.

• Mental health services for older people living with HIV must be provided on demand, at a reasonable cost and free and without judgment and stigma.

• Mental health professionals serving older people living with HIV MUST be trained to address issues of the psychosocial damage suffered by long-term survivors, primarily but not limited to isolation and loneliness, depression, and alcohol and substance use, including psychological services and harm reduction services.

• Long-term HIV/AIDS survivors MUST be included in the planning and implementation of any programs and services offered to them. Again, Nothing About Us Without Us.

• Long-term HIV/AIDS survivors MUST be given a prominent seat at the table in planning all national and international AIDS conferences to ensure that we are not the “forgotten majority.”

• Resources must be allocated to programs and services grounded in the information and data gathered in HIV and aging studies.

• We must align the fight for long-term HIV/AIDS survivors with other social and healthcare justice movements, such as Black Lives Matter, LGBTQ rights movement, the women’s movement, the Native Americans’ movement, and all other movements and organizations working to end racism, sexism, ageism, homophobia, and transphobia around the world.

The post Long-Term AIDS Survivors Launch Advocacy Movement appeared first on San Francisco Public Press.

Like most of the homeless residents on Willow Street Tuesday morning, Skorochod was headed for either a city-sanctioned tent camp or the barracks-style homeless shelter at Moscone Convention Center after city workers arrived early that morning and gave them a choice: accept shelter or leave.  

Homeless Outreach Team members discussed placement options with tent residents while Public Works crews tossed items into truck beds. At least two residents received hotel rooms because they have underlying health conditions. The rest of those the Public Press spoke to were either headed to Moscone or a sanctioned camp site. 

Skorochod was nervous about being exposed to coronavirus or other illnesses at Moscone, he said, and would likely opt to stay outdoors at a sanctioned camp instead. 

City workers continue to place residents at the Moscone shelter despite concern from advocates for the homeless who fear that inconsistent testing and a lack of social distancing enforcement at large shelters could lead to another COVID-19 outbreak. In April, the Multi-Service Center South homeless shelter experienced one of the largest shelter outbreaks in the country when more than 100 shelters residents and staff tested positive for coronavirus.  

“I’m kind of disappointed because we were hoping to go into hotels,” Skorochod said, adding that he had heard from two friends who live at the camp on Fulton Street that conditions were better at the sanctioned camp than at Moscone. 

“I would rather have my own room, but they said they ran out,” said Rebeccah Franklin, who had been living on Willow Street a couple of days before city workers rousted her. Franklin had chosen to move into Moscone. 

“It’s better than on the street,” she said. “I heard that they feed you.” 

Moscone Center provides meals to those who are housed there, three residents confirmed. 

Changing shelter protocols 

In April, the Department of Homelessness and Supportive Housing told the San Francisco Chronicle that Moscone Center would hold no more than 200 people who had tested negative for the virus and undergone a 14-day quarantine period. All residents would live in small cubicles and be encouraged to practice social distancing at the shelter. 

The Department of Emergency Management assured the Public Press in July that the city was working with shelters to ensure public health guidelines were followed when they reopened, though testing residents before they entered the shelter was not recommended by the federal Centers for Disease Control and therefore not required. Instead, shelters perform temperature and symptom checks on everyone who enters the shelters and the health department recommends bi-weekly testing of staff and monthly testing of shelter residents after entry. 

As of July 20, Moscone had 115 residents, according to the emergency department. The emergency department did not respond to a request for an update on the city’s group shelter population by publication time. 

Brian Edwards, a Coalition on Homelessness organizer and member of the Shelter Monitoring Committee, the city’s homeless shelter oversight board, said he had mixed feelings about Tuesday morning’s operation.  

“While I question the safety of congregate shelters, I respect the right of people to make their own decisions,” he said of some alley residents’ decision to accept placement at Moscone.  

Matt, a housed resident who lives on Willow Street and declined to divulge his last name, said the shelter placements were “a blessing, and long overdue.”  

“We treat animals better than the unhoused,” he said, adding that he and neighbors had been asking the city to do something for the alley’s residents for months and he, too, had experienced homelessness before. Neighborhood residents have been vocal about deteriorating conditions in the Tenderloin — particularly on Willow Street — since the neighborhood saw an explosion of homeless residents in the aftermath of the MSC South outbreak, which prompted the city to thin shelter populations or shutter them entirely. 

Tara Lowe and her partner, Dashaun Jackson, traded jokes as they packed up their belongings. They were the only two Willow Street residents who received a hotel room Tuesday that the Public Press could locate. Lowe said she is HIV positive and Jackson said he suffers from congestive heart failure, making them both eligible according to the city’s hotel placement criteria, which allows only homeless residents over the age of 60 or with underlying health conditions to be placed in hotels.  

“I’m juiced,” Lowe said about moving into a hotel room. “I can’t wait.” 

Lowe would not accept placement at Moscone or a sanctioned camp because she thought residents wouldn’t have as much privacy or freedom of movement as those in hotel rooms or on the street, she said. 

“I’d rather be right here,” Lowe said, nodding to the tents around her. “I need a place where I can do my thing and not get messed with.” 

The post City Clears Homeless Residents From Notorious Tenderloin Alley appeared first on San Francisco Public Press.

“History doesn’t repeat itself, but it does rhyme.” While the remark may or may not have been made by Mark Twain, it certainly rings true as we compare the 1980s with 2020, when an incompetent response to a pandemic and a minority’s call for justice brought people to the streets.

The callous eight minute long killing of George Floyd at the hands of a Minneapolis police officer in the midst of a pandemic has been the catalyst for a worldwide demand for police accountability and long denied racial justice.

The events have a certain rhyme with the 1980s. The callous disregard for an epidemic that was initially killing despised minorities spurred the LGBTQ community and its allies to action, with street protests by the AIDS Coalition to Unleash Power (ACT-UP) and the half a million person Lesbian and Gay March on Washington in 1987.  

As a young man I volunteered with the media relations department. Three days of protest that October included a march from the White House to the Capitol, a marriage ceremony for lesbian and gay couples and mass arrests at the Supreme Court which had just ruled sodomy laws — which punished LGBTQ people — were constitutional. We were effectively criminals in most U.S. states.

The most powerful demonstration was the silent witness of the AIDS Memorial Quilt, begun by activists in San Francisco in 1985. By 1987, it filled the Washington Mall with thousands of 6 foot by 3 foot panels bearing the names of those who had died from AIDS. It was a rebuke to the Reagan Administration which had first ignored and then underfunded HIV prevention and treatment.

When I passed near the quilt I had wondered what my panel would look like, assuming (rightly) that I too had been infected and would likely die well before I was 30. Due to luck and medical advances I have lived to see another era of protest and pandemic.

Today COVID-19 is disproportionately taking the lives of minorities. The economic and social dislocation has once again created a wave of demand for change and an end to police brutality against African Americans.

In February, the AIDS Memorial Quilt returned to the Bay Area after being moved to an Atlanta warehouse in 2001. At the time, It seemed likely to be little more than a historic footnote, a reminder of a darker time. It was again to be unfurled, this time in Golden Gate Park in April, but the arrival of the coronavirus changed everything.

At the quilt warehouse in San Leandro in February, I interviewed John Cunningham, executive director of the National AIDS Memorial Grove which cares for the quilt. He explained why he believes the AIDS Memorial Quilt speaks to the current generation.

“I think it’s important to remember that the AIDS crisis was the intersection for many different social movements, whether it be individuals of color, whether it be access to health care, whether it be poverty, whether it be LGBT, whether it be substance abuse, all of those different movements intersected in this one particular epidemic. And with that being the case, we feel that it is appropriate to take into leverage the lessons of the epidemic, and to be able to identify the best practices of social movements. So that, in the future, social movements will not have to go through the painful and arduous process that we did, which was trying to figure out how to get the attention of a nation and how to start to save people’s lives.” — John Cunningham

The post Pandemic and Protest: How AIDS and LGBTQ Activism in the ’80s Informs the Present appeared first on San Francisco Public Press.