Jayson’s Story

Community Research Initative’s clinical trials work continues to play a crucial role in accelerating the discovery of safer, simpler, and more effective HIV and other infectious disease treatments. These trials such as our long-acting injectable trial also enable research participants to be more active in their own healthcare, to gain access to new treatments before they become widely available, and to help others by contributing to medical knowledge.

More than 3 decades after the outbreak of the HIV/AIDs epidemic, the world has had to face another global public health crisis in COVID-19. For more than a year we have had to face a changing world. However those who were there at the beginning of the HIV/AIDs crisis reflect on this year with a sense of déjà vu and hopeful optimism for a faster response and changes to the future landscape of public health.

Karen McLaughlin, Community Research Initative’s Research Coordinator of more than 20 years, has worked in the HIV/AIDS field since the beginning of the epidemic. Karen reflects on her time during the early days, “the patients were so scared and so isolated; nobody would go near them. That’s kind of how it began, developing relationships, building a trust, creating a place where you could be comfortable and, be treated to the best of our ability at that point. It was showing them that people still cared about them, we would still touch them. We would still cry with them….and I think that’s when my style [of care] transformed. We got so close to them, nobody else wanted them”

With the outbreak and shut down of normal life during COVID-19 in March 2020, there was a serious concern that clinical trials like the one Jayson participated in at Community Resource Initiative may have to halt indefinitely. During this time there was a lot of uncertainty about what was going to happen day-to-day and some sites across the US did have to close down their clinical trials due to these hardships.

Karen explained “We didn’t know how strict they were really going to be. Are they going to start pulling people over in cars, would the shipments keep coming in, we didn’t know if we could do labs and have them picked up, if patients or our team was going to get COVID. You didn’t know day to day what was going to happen”.

With shutdowns looming, Community Resource Initiative took special care in reaching out to every single one of our trial participants with complete transparency around COVID concerns at that time. Thanks to the hard work of our team, we were able to explain multiple eventualities and our plans to prevent any disruptions of care.

“We projected all different scenarios. Not just plan B but plan X,Y,Z. It really took a lot of planning. They [the patients] trusted us and they were patient with us, and they showed up, they did everything we asked them to do.”

Although a possibility for the participants of Community Resource Initiative’s long acting injectable trial during COVID-19, not a single participant had to drop out or use oral bridging medication during this year. Jayson describes his experience “they [Community Resource Initiative] made sure that they took care of us and we wouldn’t have to worry about our treatment or continuing the study. But they looked ahead and [were] very adaptable and flexible…..and really went out of their way”

Not only have we been at the forefront of HIV/AIDS clinical research but we have also become a model of care that goes above and beyond thanks to all of the incredible individuals in our team.