How Far Would You Go for Your Research? 545 Miles?

“Why on earth would you do that to yourself?!”

A common question asked by many friends, family and colleagues. As researchers we strive not just for findings with reliability and validity but also for engagement and impact. To translate these findings into policy and practice that makes evidence-based change. But how far would you go to make that difference?

Following knee surgery, I took up cycling for rehabilitation as a low impact form of exercise. After I moved to Los Angeles it became a great way to explore the city at a slower pace and from perspectives just not possible in a car.

When my research diversified from solely ageism to include intersectional stigma for older adults living with HIV I learned about the AIDS/LifeCycle (ALC). Considering more than 50% of those living with HIV are older than age 50, yet little research is done and awareness is pretty low, my interest immediately was piqued. A bike ride from San Francisco to Los Angeles that raised money, awareness and challenged the stigma around HIV and AIDS? Count me in!

At this point I had no comprehension of what this entailed but what a great way to combine my passions of research and cycling … right?!

Building a Team

Starting with a thoroughly exhausting 10 miles, I quickly realized this was going to be harder than a public engagement workshop and I would require the support of others, much like being part of a research team. Reaching out across the University of Southern California (USC) we quickly established a mighty band of academics, staffers and postgraduate students who were at least interested in supporting, if not undertaking the journey. And just like that, The Keck Stands (a witty combo of bicycle kick stand and Keck Medicine) was born.

We committed to at least one full day of cycling each weekend through the year in preparation and as the ride grew closer, two or three 7-hour days in the saddle each week were required to ensure we made every inch of our journey.

In all, we have cycled thousands of miles to prepare for this mammoth 545-mile adventure; no mean feat, but as a team, we cheered each other through. With a team formed and their name being used, Keck Medicine of USC soon rallied and joined ALC as the lead medical sponsor. Now we were starting to have an impact!

‘We could have had an away day, we could have had a Zoom meeting, we could even have had a live panel discussion, but we did this.’

During the ride from San Francisco to Los Angeles, together, our team conquered 100-mile days, beat the “Quad Buster” hill and Kecked the “Evil Twins” back-to-back hills. We carbo loaded on cookies and cinnamon rolls and drank root beer floats. We laughed together, cried together and certainly worked up a sweat together. We could have had an away day, we could have had a Zoom meeting, we could even have had a live panel discussion, but we did this.

Among nearly 2,000 cyclists and similar numbers of support crew, we traveled hundreds of miles down the California coast through urban and rural communities. On the way we sparked conversations not only about the ride but about HIV and AIDS, with people who may never have talked about these things.

We raised visibility, especially on day 5 when everyone, dressed in red, recreated the red HIV ribbon, snaking through the Southern California hillsides. On our final night together, we held a silent candlelit vigil on the beach, remembering all of those lost to HIV/AIDS, coming together in the ALC love bubble to support each other and commit to the cause, to fight the stigma, and to help end the HIV epidemic.

During these times I thought, this is what participation is about, this is how to engage “hard to reach” communities, and this is what showing up looks like.

The Gero Connection

All well and good, but “What does this have to do with gerontology?” I hear you ask. More than half of those living with HIV are older than age 50 and by 2030 that number will rise to 70%, due to a combination of fantastic drug developments enabling people not just to survive but to thrive following a HIV diagnosis. But also one in six new diagnoses occur in this age group. Older adults often are seen as asexual and have less information tailored to them, resulting in lower levels of sexual health knowledge.

‘I had the privilege of speaking to people who hadn’t even thought about aging with HIV.’

Even when we look at research and policy on sexual health, it largely ignores those older than age 50, demonstrating an implicit bias directly impacting the well-being of older people. Understanding and embracing intersectionality means that we need to highlight rather than hide the experiences of older adults living with HIV and change the way services are delivered to meet the needs of an aging population.

During the ride I not only had the opportunity to experience a sense of community, affectionately called “the love bubble” but also had the opportunity to hear stories. Younger people and older people alike shared their stories of living with HIV, emphasizing that battling the social stigma was often more difficult than the virus itself. I listened to their experiences and the barriers they faced as they navigated their own paths. Also, I had the privilege of speaking to people who hadn’t even thought about aging with HIV, let alone thought about how aging impacts their health trajectories or of aging as a criteria for intersectional discrimination.

There is clearly a lot more to be done regarding sexual health and older adults, but conference papers, journal articles and talks to policy makers only take us so far. We need to take a step back to understand and embrace the communities with which we work, listen to them, hear them, and go that extra mile … or 545.

Paul Nash, PhD, CPsychol, AFBPsS, FHEA, is a professor in the Leonard Davis School of Gerontology at the University of Southern California, focused on intersectional discrimination and stigma as well as health inequity, predominantly for older minority and “at risk” communities living with HIV. Nash also is a commissioner and co-chair of the aging caucus for the Los Angeles County Commission on HIV, and co-chair of the Masters Programs in Gerontology at USC.

Photo caption: Paul Nash, right, with The Keck Stands members Dr. Tsung-Yu Lu (left) and Jennifer See-Zapata (center).

Photo credit: Courtesy Paul Nash.