Community Representative Serves as Study Participant Voice for REPRIEVE Protocol Team

Paris Mullen

Meet Paris Mullen

Paris Mullen is one of the dedicated ACTG Network Community Scientific Subcommittee Representatives and Community Advisory Board (CAB) members at our University of Washington, Seattle clinical trial site. Each ACTG Network clinical trial site has a CAB made up of members from the local area that are affected by or living with HIV. The CAB holds regular meetings with site investigators and also hosts events open to the community to educate people about HIV/AIDS and ACTG Network clinical trials. In addition to his duties on the Scientific Subcommittee and CAB, Paris also serves as a designated Community Representative for the REPRIEVE trial. REPRIEVE, a randomized trial to prevent vascular events in HIV, will test whether a daily dose of a statin will reduce the risk of cardiovascular disease among people living with HIV.

“I wanted to serve as a Community Representative for REPRIEVE because this trial presents a unique opportunity to advocate for the heart health of those living with HIV,” said Paris. “The REPRIEVE trial offers hope and a ‘fighting chance’ for those living with HIV as it pertains to decreasing inflammation of the arteries and potential heart disease.”

 To be effective in the role of Community Representative, Paris notes that it is imperative to gain the respect, trust and support of the greater HIV/AIDS community at large.  Community Representatives facilitate dialogue between researchers, clinicians, principle investigators and the lay community as it relates to clinical trial research and study participation.  In addition, they help ensure that concerns, questions and perspectives of the community are always conveyed in a timely and effective manner.

For years, Paris has been an outspoken advocate for research and believes that without clinical trials, researchers will not be able to answer crucial scientific questions that may ultimately save, sustain and improve the quality of life of those living with HIV.  Simply stated, he believes, “people need research and research needs people.” 

As an advocate for the HIV/AIDS community, Paris works to help increase general scientific literacy by distilling HIV/AIDS science in a comprehensive and culturally appropriate manner.  More specifically, he works with the African American population to help facilitate and mobilize community activism that includes leadership opportunities.  

“Researchers sometimes have a lack of knowledge about the cultural differences among underrepresented ethnic populations and this can result in ineffective communication strategies regarding clinical trial research at all stages, including recruitment, enrollment, and retention,” said Paris. “Recruiting marginalized and underrepresented populations for clinical trials can require additional investments of time and resources to learn what methods may work in distinct communities to improve acceptance of clinical research and therefore improve participation.”

The REPRIEVE trial presents an interesting dichotomy with regard to the potential study participant population who is now living longer with HIV but is at higher risk for developing heart disease compared to the general population. Heart disease is evident even among younger individuals and occurs despite having HIV under control. In particular, it is extremely important to understand how to recruit, enroll and retain individuals who are physically the healthiest they have ever been.  Understanding the benefits and barriers this population faces when considering enrolling in REPRIEVE is one of the main challenges Paris faces when advising the protocol team.  However, he is honored to collaborate with fellow REPRIEVE Community Representative, Aaron Laxton, to help in these efforts.  Paris has a great deal of respect for Aaron and what he brings to the table.

“Aaron is a dynamic community leader with a steel will and determination to advocate for communities disproportionately impacted by HIV,” said Paris. “He is a compassionate visionary, a change agent and has courageously and publicly shared many aspects of his life in order to encourage, educate, raise awareness and advocate for the fight against HIV.”  

Paris also commends his friend, mentor and colleague, Michael Louella, Outreach Coordinator at the ACTG Network’s University of Washington, Seattle clinical trial site for always being there to support him and encourage his advocacy efforts.

“Michael embodies, equally, a love for people and science. He keeps the plight of the human experience at the center of the fight against HIV.  He is a tireless advocate who singlehandedly does the work of a team of people,” said Paris. “I am always amazed at his ability to engage and raise awareness amongst communities through his social media and marketing expertise. Michael is pillar in the global HIV/AIDS community.” 

Paris has a message for Community Representatives of other ACTG Network clinical trials:

“Do all that you can to help ensure that participants in studies proportionately represent the marginalized populations which are disproportionately impacted by HIV/AIDS.  Community participation on protocol development committees is essential.  It allows us to establish and leverage strong cohesive relationships with not only the lay community but also all research site personnel. Additionally, I would encourage Community Representatives to remember to practice self-care and to incorporate practices that help ensure their mental-emotional-physical-spiritual health and long term sustainability.”

Paris shares a deep appreciation for the study participants of RERIEVE and other current and previous clinical trials for their tremendous sacrifices. Regardless of the REPRIEVE trial’s outcome, he strongly believes that all study participants have advanced the fight against HIV/AIDS and are amongst the nameless and faceless who deserve applause and praise for advancing the well-being of human kind.

In closing, Paris also has a message for ACTG Network researchers and clinicians:

“I would like to express my humble gratitude for their sacrifices, dedication and tireless advocacy to help end the HIV/AIDS pandemic. I encourage ACTG Network researchers and clinicians to go out of their way to engage the participation and contribution of Community Representatives and CAB members in protocol development, review and implementation. I hope that researchers and clinicians are willing to help ensure that marginalized populations are afforded increased access to mentorship programs, scholarship opportunities and other volunteer positions for educational and Q&A opportunities.  

REPRIEVE is funded by the National Heart Lung and Blood Institute (NHLBI) at the National Institutes of Health (NIH), with significant support and collaboration from the National Institutes of Infectious and Allergic Disease (NIAID). In addition, Kowa Pharmaceuticals America, Inc. will be providing the study drug and additional financial support.

For more information about REPRIEVE, please visit www.reprievetrial.org

 

Date Posted: 
Thursday, October 29, 2015