Volunteer Gives Input on Studies

Lionel Hillard is marking five years volunteering with the AIDS Clinical Trials Group (ACTG) Network’s Trinity Health and Wellness Center site in Dallas, Texas.

“I wanted to help find a cure for HIV and other sexually transmitted diseases,” Hillard says.

He is a member of his site’s Community Advisory Board or CAB. Each of the ACTG’s 60 sites has a CAB made up of members from the local area who are affected or infected by HIV. The CAB holds regularly meetings in which the site’s investigators may come and solicit their input about future studies. CAB members also host events open to the community to educate people about HIV and enrolling trials within the ACTG.

“What I like best about being a part of the ACTG is the ability to give guidance to those who are not on the front line about new medications and side effects,” Hillard says. “I also like that we are ensuring the trials being done are in the best interest of the people the study is trying to help.”

Hillard was chosen by his site in Dallas to represent them at the Network-wide Community Advisory Board level. This group is called the Global Community Advisory Board or GCAB. Each site is represented and each representative serves a two-year term. Issues discussed within the GCAB include support of community outreach, education and participation in research. Through being a member of this committee, Hillard has been able to meet likeminded individuals from around the world who share his passion for research. Salim Bakari Ngazi is the GCAB representative from the ACTG’s Moi University Clinical Research Center in Eldoret, Kenya.

“Lionel is a very understanding, generous person who has a passion for the community,” says Ngazi. “He is always ready to help, share and learn with other GCAB members who are old or new. I was with him when he spearheaded the GCAB subcommittee to train new CAB members. Lionel deserves a pat on the back for a job well done.”

In addition to serving on his local site’s CAB and the Network-wide GCAB, Hillard is a member of the ACTG’s Outreach, Recruitment and Retention (OR&R) subcommittee. This group supports study teams by creating flyers to attract participants into clinical trials. OR&R also encourages honoring study participants each Dec. 2, which is the anniversary of the first person enrolling into an ACTG study back in 1986. OR&R developed a guide for sites to host an appreciation event for or write letters of gratitude to study participants.

Hillard’s time with the ACTG has introduced him to the science surrounding HIV. Learning about the current treatments and their side effects has influenced the direction he would like to see future studies take.

“We should research the long term effects of these anti-HIV medications on the body, especially since people are living longer now,” Hillard says. “I also think we should investigate different dosages of drugs versus a one size fits all approach.”

When he is not volunteering with the ACTG, Hillard enjoys reading, shooting pool, photography, tennis and listening to R&B.