A Hero’s Welcome for SUPER Volunteers

Blood draws, receiving test vaccines, being infused with experimental broadly neutralizing antibodies… Such is the life of the people we call study participants—the people who join our clinical studies and who I’ve dubbed as SUPER Volunteers.  Much like your friendly neighborhood Spiderman™, SUPER Volunteers are courageous and noble.  Courageous for willingly taking the leap to join a study we conduct that may cause side effects similar to having a mild flu and perhaps testing HIV antibody positive as a result of vaccine-induced antibodies, not because of having HIV.  Noble for being selfless and joining a study that will have more impact on people around the world that are at substantial risk of getting HIV, including men that have sex men and transgender people in the Americas and straight women in Sub-Saharan Africa, than for themselves.

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Attending monthly 2.5 hour meetings, reviewing how studies are designed and how they may affect different communities, holding discussions about real issues, such as how removing the word ‘gender’ from United Nations human rights documents may impact the transgender community, attending conference calls to interview new members, attending ad hoc meetings to plan a new community educational or empowering event…  such is the life of an NYC HIV Prevention Research Community Advisory Board (CAB) Member.

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One of the small ways we express gratitude is via the modest compensation offered.  Studies we conduct compensate up to $200 per visit and studies have multiple visits while CAB members are offered a $20 stipend and a meal for attending a CAB meeting.  These are small tokens that contribute to forging lasting relationships with study participants and CAB members alike.  At the clinic, we also love to welcome all with a smile, a hug when okay, trade banter with those that like to and offer a snack with juice or water. Last but not least, we kick it up a notch every now and then and make a showing of our gratitude into a well-deserved production.

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The last appreciation event we hosted was called ‘A Hero’s Welcome for SUPER Volunteers’.  It was held on Nov 26, 2018 at Therapy Bar in Hell’s Kitchen and it was of the variety that went a little extra.  The program featured 2 performers that have been connected to our research clinic for 10+ years. One being Jahlissa A. Ross, the reigning Ms. PACRU (Ms. Project ACHIEVE/Columbia Research Unit) as well as Stella D’oro, the Queen Mum of Vaccine.  We also welcomed JL as MJ (Jose Luis as Michael Jackson) and Hibiscus as the newest members of entertainers that advocate for HIV prevention and treatment research. Therapy Bar did a great job in providing a wonderful and delicious menu of food, drinks, and music. Three lucky winners also walked away with LED TVs that were donated by Pepcom.

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I hope you too get to experience one of our appreciation events. Becoming a CAB member or becoming a SUPER Volunteer by joining a study we conduct will get you an invitation.  Will you join us in reviewing protocols as a CAB member?  Will you be the next one to allow yourself to be a study participant for the sake of public health?  Will you be the next courageous and noble one to take the leap to help end HIV?

Jorge Benitez

Community Engagement Coordinator

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