Some have tried to disparage comparisons between the HIV/AIDS pandemic and the COVID-19 pandemic, and not without reason. True, the epidemiology of the two viruses is different; the modes of transmission are different. The pandemic is not weighted with the same negative valence that the mainstream has placed on AIDS; many cast AIDS as a moral judgment, but not so with COVID-19. Healthcare workers are not abandoning patients with COVID-19 infection as they often did with patients with AIDS-related complications. Now, the public at large is encouraged to #StayStrong and infographics cheerfully put handwashing words to music; communities at risk in the early days of HIV/AIDS were pummeled with fear-based education.
However, more than one commentator has heard the echoes of HIV/AIDS in COVID-19. For instance, both pandemics started with massive knowledge gaps. So, like the first and second decades of the HIV/AIDS pandemic, we are learning as we go, building on what we have learned from our past experiences with negotiating local contexts and global interconnectedness, fighting against indifference and apathy, and engaging in conversations about individual choice and communal benefit. We are seeking out credible sources and looking past ideological spin. We are tempering “everyone is affected” proclamations with more nuanced analyses of how health outcomes differ based on income level, race/ethnicity, and access to care, among other aspects.
We have also found ourselves on familiar ground in terms of three compelling issues: stigma; community impact and healthcare access; and the importance of advocacy.
Stigma, whether fueled by homophobia or racism or some other form of Othering, has been a weapon in the hands of many when it comes to HIV/AIDS. The same is true for responses to COVID-19.
From President Trump and his administration’s supporters calling COVID-19 the “Chinese virus” to non-Asians committing verbal and physical attacks against people of Chinese descent and others who are or are perceived to be Asian, stigma has been propelled by racism and xenophobia. Russell Jeung, PhD, Sarah Gowing, and Kara Takasaki of the San Francisco State University Asian American Studies department analyzed “216 news articles related to the Covid-19 virus, xenophobia, and discrimination found on the America’s News database over a four-week period (Feb. 9 through March 7, 2020)” and found that “Coronavirus discrimination news increased by 50% from 93 articles in week 1 to 140 stories in week 4; 471 cases related to xenophobia or discrimination were reported (16 cases/day); [and] 292 new, separate cases of xenophobia or discrimination were identified (10 cases/day).” A website set up by three entities, the above-mentioned academic department, the Asian Pacific Policy & Planning Council, and Chinese for Affirmative Action (CAA), on March 19, 2020, has provided a way for individuals to report acts of hate toward people of Asian descent. As of this printing, the STOP AAPI HATE reporting center has received almost 1,500 reports of coronavirus discrimination from Asian Americans in the U.S.
Not surprisngly, the UN has reported increased COVID-19 blame directed toward LGBTQ communities in several countries, communities that often have a tenuous engagement in sustained healthcare as well as unstable housing. The UN has also charted an increase in anti-Semitism, fueled by conspiracy theories that replay fears of a Jewish takeover of the world, in the age of COVID-19.
Community Impact & Healthcare Access
The disproportionate impact on communities devastated by COVID-19 in the U.S. resemble HIV/AIDS statistics. Once again, a healh crisis brings to the fore the health disparities effected by systemic inequities.
Data is limited, but researchers are beginning to piece together a chilling portrait: Latinx and African-American communities have been disproportionately harder hit when compared to white and other communities. According to a recent New York Times article: “In Iowa, Latinos account for more than 20 percent of coronavirus cases though they are only 6 percent of the population. Latinos in Washington State make up 13 percent of the population but 31 percent of cases. In Florida, they are just over a quarter of the population but account for two of every five virus cases where ethnicity is known.” Another article from the same publication states: “In Illinois, 43 percent of people who have died from the disease and 28 percent of those who have tested positive are African-Americans, a group that makes up just 15 percent of the state’s population. African-Americans, who account for a third of positive tests in Michigan, represent 40 percent of deaths in that state even though they make up 14 percent of the population. In Louisiana, about 70 percent of the people who have died are black, though only a third of that state’s population is.”
The Importance of Advocacy
he International AIDS Society and others have recognized the special contribution that the AIDS community can make to our response to COVID-19, offering a webinar on May 14 titled, “COVID-19: Building on the HIV response to introduce innovation in a pandemic.” It seeks to create a platform to “share and discuss innovative solutions in response to the COVID-19 pandemic that are drawn from existing technologies and capacities, taking inspiration from previous work on HIV prevention, treatment and cure research.”
In New York City, HIV/AIDS and other community-based organizations are collaborating to create a kind of Dream Team to identify problems and suggest solutions related to COVID-19, particularly in vulnerable and marginalized communities. The Covid-19 Working Group–New York (CWG-NY) is “a coalition of doctors, healthcare professionals, scientists, community workers, activists, and epidemiologists committed to a rapid and community-oriented response to the SARS-CoV-2 pandemic,” reads the mission statement. Some of the organizations involved include Treatment Action Group, PrEP4All, Housing Works, the National Black Leadership Commission on Health, Callen Lorde, and the Latino Commission on AIDS. The prepared statement goes on to read: “The CWG-NY will continue to work closely to advocate for policies and protocols that address unique barriers to health care services, safe isolation spaces, and important income and safety net services for marginalized New Yorkers—including homeless individuals, incarcerated populations, and those living with chronic health conditions. The group is also focused on diagnostics, treatment, prevention and vaccine pipelines for COVID-19, with members bringing their unique expertise on community-led research advocacy for other infectious diseases such as HIV, Hepatitis C, and tuberculosis.”
Of course, the HIV/AIDS community is stepping up! In the days and months to come, we should expect more individuals and coalitions to come forward to help and heal. A&U also recognizes that HIV/AIDS advocates have much to contribute to addressing COVID-19 and recently spoke to a number of activists around the country, including:
Paul A. Aguilar • Fifth-generation native San Franciscan; HIV-positive since 1988.
Gregg Cassin • Thirty-five-year HIV survivor, creating community-building, psycho-social programs for people living with HIV; Founder/facilitator of Honoring Our Experience, a healing program for longterm survivors working at Shanti, one of the country’s first AIDS organizations
Nancy Duncan • HIV advocate and New York State HIV Certified Peer Worker
Jesus Guillen • HIV and Aging Workgroup Chairman; HIV LONG TERM SURVIVORS International Network Group, Founder and Director
Scott A. Kramer, LCSW-R • Long-term survivor and psychotherapist based in New York City
Asha Molock • Advocate and author of The Underground Woman
Davina Conner Otalor • Living with HIV for twenty-two years; an advocate, podcast host, international speaker, Prevention Access Campaign ambassador/board member and steering committee member using her passion to change the lives of others.
Murray Penner • Executive Director for North America with the Prevention Access Campaign (U=U). Passionate advocate with nearly thirty years of experience in the HIV field
Connie Rose • Co-Chair/PLHIV–NV HIV Modernization Coalition; Positive Women’s Network State Lead–NV
Ed Wolf • Working in the HIV field since 1983, as chronicled in the award-winning documentary, We Were Here
What is one significant lesson from addressing HIV/AIDS might be helpful in our current COVID-19 situation?
Asha Molock: One important lesson that I learned is to not buy into the hysteria, fear and stigma regarding COVID-19. For me, it’s important to not be afraid to be around anyone who has recovered from COVID-19. To do so would be perpetuating the stigma that was and is still shown to people living with HIV and AIDS.
Ed Wolf: Remembering that, just like in the early days of the AIDS epidemic, info is coming at us from numerous sources, some accurate, some not so. It’s easy to get overwhelmed. The basic facts of COVID-19 have basically stayed the same, however, and, just like HIV, can be used in our risk-reduction/decision-making. The window period, the symptoms, the population at greatest risk of serious illness, the prevention tools, etc., can help us navigate what is no risk, low risk, moderate risk and so forth.
Nancy Duncan: I believe one lesson to be learned from my history with addressing HIV/AIDS would be that people should never assume that they are immune to this virus and can’t get it because they are healthy and to stay as vigilant and safe as they can.
Connie Rose: One lesson: Those leading should listen to our medical advisers when they stress the importance of having a better process in place for getting from discovering a new virus to how to test for said virus and have access to FREE testing for everyone.
Scott A Kramer: We are stronger than we know. We can bring all we learned from the experience of the HIV/AIDS pandemic and use that to navigate COVID-19. Patience, balance, activism, and standing up for community as well as kindness, compassion, and human connection are essential.
Jesus Guillen: We have not only the first generation growing older with HIV, but now double pandemic-surviving. The only thing in common for HIV LONG TERM SURVIVORS are the coping skills, the way we deal with a crisis. From one [perspective], we have now a lot of triggers, but, also, many feel we were prepared to be here. I would not be alive without the help of many people in my life, so, from the past to the present WE ARE ALL IN THIS TOGETHER. Let’s keep helping each other. #physicaldistancing #sociallycloserthanever
Davina Conner Otalor: One significant lesson for me addressing HIV/AIDS with this current COVID-19 issue is that you realize, when first finding out about living with HIV/AIDS, how precious life is and not to take it for granted. And with knowing now that one can contract COVID just from being next to someone is very scary and those emotions of how grateful we should be come right back because none of us know how long we have. So, we all have to stay as safe as possible right now and, after quarantine is over, we still have to keep the same practices in place for a while.
Murray Penner: We have learned in the HIV/AIDS epidemic that social determinants of health are the cause of many health disparities. We see this is also true in COVID-19. Addressing racism, homophobia, transphobia, sexism, and many other “ism’s” are essential to an effective response to end this pandemic and it should re-energize us in the fight to end HIV as well.
Gregg Cassin: Of course, there are so many [lessons]. But for me the most profound and moving lesson we learned during AIDS was the importance of love. Today we are seeing people around the world recognizing the power of human connection, in essence the importance of love. Look at the sacrifices strangers are making for one another…the courage of nurses, the donation of a single mask from a farmer, the families’ hands held up to the window, each reminding us of our humanity. We are witnessing our human family agreeing with the importance of caring about and valuing every single person.
Our community is profoundly moved by this beautiful response. But this does remind us of the tragic impact of homophobia and racism causing the lack of response to the AIDS epidemic.
Paul A. Aguilar: Staying connected to each other and united is key.
How has your local HIV/AIDS community or a particular ASO stepped up?
Jesus Guillen: I haven’t felt, in general, much mental health support from our HIV/AIDS community here in San Francisco, and even the basics like food for my mother, my kitty and I were not easy to arrange delivering. But I want to recognize the labor of OPENHOUSE——who works with our LGBTQ elders-—about the checking in on us and even the smiles I can feel through the telephone. I feel, that besides the basics, our mental health is in such a bad state that needs a mental health emergency response through telemedicine. Everyone should soon have access to a therapist through your computer or cell phone. Sadly, now that I think about it, this crisis is showing us once again how the HIV LONG TERM SURVIVORS have felt invisible even in our own HIV COMMUNITY; someone should be checking in every HIV LTS once a week, see what we need, how to make our lives better, during this crisis and after. Without sounding harsh, WHERE ARE THE HIV AGENCIES during the COVID-19? I will ask this question to all our brothers and sisters in our groups.
Ed Wolf: Because I live in San Francisco with so many other long-term survivors, some of the ways to reduce one’s COVID-related risk are already familiar to us. It really helps to have folks with shared history around you to remind one that COVID tests are already here (if not readily available) and treatments are already appearing on the horizon. This will not be like the AIDS epidemic in the long run, though it is especially difficult now.
Paul A. Aguilar: Honoring Our Experience facilitator Gregg Cassin has created some amazing Zoom events, ranging from simple checking-in with each other to exercise class to a writing exercise to an art class. They have been a godsend.
Gregg Cassin: I work at Shanti, one of our country’s first AIDS service organizations…training hundreds and then thousands of volunteers to respond to the emotional support and practical support needs of our community members diagnosed with AIDS in the early days.
Nancy Duncan: I’m currently not connected with any ASO in my area, but I would hope that they are reaching out to their clients during this difficult time. I did receive a couple of phone calls from the head social worker at the clinic where I receive my HIV primary care.
Scott A. Kramer: I’d like to thank so many ASOs in New York City who are stepping up during this difficult time, when their major fundraising events are either going virtual or being canceled. Even with staffing shortages and shrinking budgets, they continue to provide essential and life-saving services no matter what. They continue to support and save our community.
Murray Penner: Service providers have made tele-health readily available. There is even some home testing for HIV and STIs. And connectedness and support through social media has increased, which applies to both the local HIV community as well as more nationwide.
Asha Molock: Bebashi: Transition To Hope [in Philadelphia] continues to be open for appointments, but you should call a case manager first if you have COVID-19 symptoms. They are also still providing food, medication and other services. Bebashi used their COVID-19 Grant to build up their Food Pantry. Since the pandemic they have been feeding almost 700 people a month and delivering food to those who cannot pick up.
Philadelphia FIGHT is providing TeleHealth to their clients and has a COVID-19 information page on their website with pertinent information such as: Tips for Safe Grocery Shopping, Mental Health & Quarantine, Unemployment Assistance and much more information. I am not a Philadelphia FIGHT client but as a FIGHT Project Teach Alumnus, I appreciated the wellness-check phone call that I received to see if I was well and needed anything.
Connie Rose: Community Counseling Center (CCC), Community Outreach Medical Center (COMC) and Rose Dignity Health have all implemented some amazing online web-based platforms. COMC offers phone in medical telehealth services. Dignity Health, CCC and The LGBTQ Center (The Center) have all implemented some amazing online Zoom sessions for their previous in person support and work groups. The Center has officially launched a new 24-Hour Crisis Hot line that is staffed by advocates certified by the National Association of Certified Advocates. The Certified Advocacy Network, or CAN program, was created by Holly Reese of Las Vegas and the phone number for anyone living in Las Vegas, Nevada, and in crisis or a victim of a crime can call (702) 745-4600 or if you live somewhere nationally and just need help finding resources locally you can call (833) 740-0500 and speak to a Certified Advocate 24-hours a day! (You can speak to me if you call Sunday–Friday, 5 a.m.–8 a.m. and 5 p.m.–8 p.m.)
We are spending a lot of time indoors, often cut off from the ways we replenish ourselves. What is your number-one self-care tip?
Ed Wolf: Find ways to safely get outdoors as much as possible. The sun, sky, trees have answers for us that walls and ceilings do not have.
Asha Molock: As a caregiver for two other people, I must find time and a quiet space for me to be still, breathe, and meditate. Also, maintaining my healthy eating habits and exercise routine.
Connie Rose: Learn to meditate, if you have not. It is something you can do anywhere, anytime. Take it seriously and look up a bunch of different suggestions for “how to meditate.” Then try a bunch of different ways until you find the one that puts your mind at ease, and you feel refreshed after doing it. Meditating, it is like spring cleaning for your whole mind and body that can done daily.
Scott A. Kramer: My number one self-care tip is routine/balance. Even if there is nothing to do, a sense of routine can help us plan our day and give us a reason to wake up in the morning. Balance is incorporated into routine making sure we get to experience pleasure as we hear upsetting news through the media and experience isolation. Read, watch your favorite shows, video chat with friends, masturbate, open a window, breathe in some fresh air, and write down three good things you experience each day.
Gregg Cassin: Oh my gosh that was such a tough question. I don’t think I’m doing a great job with self-care. But I do have to say I am finding incredible comfort in Zoom calls that are bringing together friends who I would not ordinarily be spending time with. We have been doing a writers group (open to anybody, non-writers, new writers, experienced writers). They have brought together people from around the country to share their stories. Our first few sessions have been inviting long-term survivors to reflect on various aspects of their survivorship. Again, we include everyone, so newly diagnosed people, HIV-negative people who relate to and lived through the epidemic. Anyone that feels like they want to experience something powerful by sharing space with our community.
Nancy Duncan: I would say to stay well mentally by connecting with others by calling friends and family or Zoom meetings, eat right, exercise and try to keep as normal a routine as possible.
Murray Penner: For me, keeping a routine, including staying in regular contact with family and friends (mostly through texts and Zoom conferencing) is essential to self-care.
Paul A. Aguilar: Find something you enjoy and set aside time each day to engage in it.
Davina Conner Otalor: Well, first I will say that self-care is very important and being an advocate I fall short of taking care of me at times, but my number-one self-care tip is to do something that helps your mental health and that for me is music and listening to a lot of motivation videos on YouTube and some days sitting quietly and thinking about how can I be better for me to help others.
Jesus Guillen: Number-one self-care tip is BREATHE and be selfish about your happiness: IT IS OK TO LAUGH and have FUN even in lockdown. I want to add an important element because many of us are caregivers, and that can be extra difficult; so YES, once again, be selfish and when necessary, go to your safe space, your bedroom, close the door, shake the fight/anger/problems, dance them off, sing loud and once again LAUGH or cry if you want to. Be ready for your new day. #survivingstill
For more information on the HIV LONGTERM SURVIVORS GROUP (Jesus Guillen), go to the HIV Long-Term Survivors Group on Facebook
For more information about Scott A. Kramer, log on to: www.affirmingpsych.com.
Follow Asha Molock on Facebook.
Follow Davina Conner Otalor on Facebook.
For more information about Murray Penner/Prevention Access Campaign, log on to: www.preventionaccess.org.
Follow Ed Wolf on Facebook.
To report anti-Asian hate incidents, log on to: www.asianpacificpolicyandplanningcouncil.org/stop-appi-hate.
Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle.