COVID-19 has changed everything—how we work, how we relate to one another, and how we maintain social connections. Like almost every other City department and program, Age Friendly Seattle is now doing all work remotely. Many of our community events had to be cancelled. Others were shifted to virtual formats, like the (now virtual) Civic Coffee Hour. But important work goes on. We can learn many lessons from the COVID-19 pandemic that can apply to our work in the future, just as past pandemics have informed our response to the current crisis.
As program manager of Age Friendly Seattle, I have worked with Saying It Out Loud (SIOL) organizers to promote the health and well-being of older adults through partnerships with health and social welfare providers. Together, we have explored the parallels between the current COVID pandemic and the earlier HIV/AIDS epidemic.
Age Friendly Seattle and SIOL collaborated on “What have we learned from the HIV/AIDS pandemic with COVID-19?”—an online forum on June 26 that featured a diverse panel of Lesbian, Gay, Bisexual, Transgender, Queer, Questioning, and Two Spirit (LGBTQ2S) voices—scholars, activists and elected officials—who were instrumental in helpIng caregivers, practitioners, and families deal with the HIV/AIDS pandemic. I served on the panel, which also included:
- Mitch Hunter, an activist in the Transgender (Trans)/NonBinary (NB)/Gender Diverse and LGBQIA+ communities, who has been a change agent for the last 30 years by training more than 600 area healthcare providers, staff, clinics, and area hospitals on Trans/NB-inclusive policies and best practices
- Lisa Middleton, the first transgender person elected to a non-judicial office in California
- Jeff Sakuma, Health Integration Strategist in the Human Services Department, who spent the early days of his career as a direct service provider and manager in the fields of HIV/AIDS and youth homelessness
- Ronni Sanlo, Director Emeritus of the UCLA Lesbian Gay Bisexual Transgender Resource Center, and HIV epidemiologist in the State of Florida between 1987–1994
- Jaylene Tyme, a performance artist from Vancouver, BC
By understanding LGBTQ2S grieving and suffering—not only from AIDS, but also from the rampant discrimination in housing and employment that ensued—social workers, caregivers, families, and health care professionals can better navigate today’s COVID pandemic. In the early 1990s, when the life expectancy for those diagnosed with AIDS was 18 months and discrimination in housing and employment was widespread, each of the panelists fought to bring a modicum of decency and normalcy for many in their remaining months.
For those of us who remember the HIV/AIDS epidemic, there are some obvious similarities and differences. Jeff Sakuma, who also worked at Group Health Cooperative (now Kaiser Permanente Washington) as a manager and administrator for 25 years, has identified the following similarities between the current COVID pandemic and the ongoing HIV/AIDS pandemic:
- Virus-borne illness
- Many unanswered questions at the beginning regarding its spread
- People not only becoming ill but dying
- Initial inappropriate defining of a disease by the most people impacted (i.e., coronavirus in China and HIV among men who have sex with men)
- The initial and somewhat useless search for “patient zero”—the first documented patient in a disease epidemic within a population
- Rapid trajectory of illness to death, particularly at the beginning of each pandemic
- People often unaware of their ability to spread the virus
- Federal government playing down the urgency of the pandemic
- People with weakened immune systems particularly vulnerable to complications, including death
My personal experience with HIV/AIDS began in 1987 when I moved to San Francisco. Within a short period of time, fully one percent of the city‘s population had died of AIDS, families were rejecting their loved ones out of fear and ignorance, and HIV became the number one leading cause of death among 25- to 44-year-olds (see AIDS No. 1 Cause of Death of Young Men in California, LATimes, 6/16/1993). Some of the most compelling and compassionate care provided to those suffering was initiated by nonprofit organizations, families of those grieving, and others in the healthcare field.
I will never forget the stories. In one instance, a friend’s partner’s family said they had no son because he was gay, even after learning he was grievously ill with AIDS and my friend’s advice that they visit. After calling the parents a final time months later to share that, if they did not visit soon, they would never see their son alive, the family flew from Ohio to California. The surprise was so great that their son began hyperventilating upon their arrival and died later that evening in the home of his partner’s parents. His de facto father-in-law said that he loved his son’s partner as if he was one of his own. This story illustrates a key difference between HIV/AIDS and COVID—the impact of stigma.
There are other distinct differences. Examples include the transmission rate and ages most affected. Between 1987 and 1994, Dr. Sanlo witnessed an increase in HIV diagnoses from 5,600 to 45,640 (see HIV Infection in Florida Into the Third Decade: An Historical Perspective 1981–2014, Florida Department of Health, rev. 10/19/15). Lives lost ranged from adolescents to middle-aged.
Jeff Sakuma identifies the difference between our current COVID pandemic and the ongoing HIV/AIDS pandemic in the following way:
- HIV was not initially addressed as a pandemic but an epidemic as it was thought to be localized among men having sex with men (MSMs)
- Means of transmission
- People who acquired HIV initially almost always died of this illness
- Added stigmatization of individuals who were most often contracting the virus—MSMs and people engaged in intravenous drug use
- COVID quickly became a global pandemic while HIV/AIDS took longer to recognize
- There is likely to be a vaccine for COVID but there is still no vaccine for HIV/AIDS
Compassion and caring treatment for the seriously ill are the uniting themes for both COVID and HIV/AIDS. There is fear associated with caring for COVID patients, as was the case in the early days of the HIV/AIDS epidemic when modes of transmission were less clear. This fear will last until we find a vaccine. COVID carries less stigma than HIV/AIDS but it has resulted in discrimination for the API communities who are blamed by some for its initial transmission.
Age Friendly Seattle is compiling reasons why people refuse to wear face masks, including ageist comments (often from people who refuse to wear face coverings) that COVID isn’t serious because it only affects older people and most people die in nursing homes (both untrue). This will help us understand and respond to this emerging issue. It is important to stand up now to discriminatory treatment just as the advocates did in the past. Through powerful and saddening stories, these panelists offer compassionate and thoughtful approaches to meeting the needs of those now suffering or grieving from COVID-19.
Contributor Brent Butler, Age Friendly Seattle program manager, collaborates with City of Seattle departments and community organizations on a wide range of policies and projects that will help Seattle become a great place to grow up and grow old. For more information, visit www.Seattle.gov/AgeFriendly.
Photo credit: Aging Out Loud photo at top by Studio5Graphics, accessed via Flickr Creative Commons at www.flickr.com/photos/danmorrill/7436363024 on October 16, 2015.