Teacher Turned Advocate

Watching a patient’s transformation from life to death is what inspired Michael Louella to passionately fight to transition his temporary job as a front desk receptionist into a full-time outreach coordinator position at the AIDS Clinical Trials Group Network’s University of Washington Seattle AIDS Clinical Research Site.

“I had originally moved to Seattle from New Orleans with my partner in January 2000 and I was looking for work,” Louella says. “I had visited Seattle three months prior to the move and attended this Native American dance ceremony where they told me it would change my life. I felt something at play that night in Seattle other than luck. So then I moved three months later and went to the University of Washington Seattle AIDS CRS to get my partner’s sister’s house key from her roommate who worked there. That’s when I learned about the receptionist job. I’ve been here 13 years now, so that dance ceremony was right about Seattle changing my life!”

Louella admits that he didn’t fall in love with the HIV research being conducted at the Seattle site overnight. He noticed patients coming and going and those who were not enrolling in clinical trials, in which new drugs were being tested, were becoming visibly ill. In many cases, patients were dying. Yet one man’s voyage from the brink of death back to health is what motivated Louella to inquire about staying on at the Seattle site and in a greater capacity.

“Protease inhibitors started to change the epidemic, but people living with HIV were afraid of these new medications, likening them to poison. Many refused the treatments at first. I saw patients die before my eyes,” Louella recalls. “Then, there was this one patient whose hair turned gray and he became very feeble. So he decided to enroll in a trial and I watched him veer toward death and then come back to life. He joked with me that it was vanity that finally drove him to try the new medications, but it worked. He gained weight and his hair grew back in without the gray. That’s when I truly learned all those conspiracy theories out there about HIV clinical trials were wrong and I became a proponent of research because medications are only perfected through trials.”

The road has been anything but smooth though for Louella, who is a former high school English teacher by trade. Bumps along the way include a loss in funding to the Seattle site when the ACTG Network reapplied for its competitive grant for federal funding in 2007. Seattle’s budget was cut to only support 10 to 12 of its 24 staff. Louella was initially laid off. Since he had a trip to Thailand already booked to celebrate his 40th birthday, he took his five-week vacation and let the universe decide his fate. He returned from his trip to learn that he still had a full-time job, but that the position was a patchwork of roles rolled into one.

Presently, 90 percent of his time is spent working on ACTG studies through outreach efforts as well as in an administrative capacity for ACTG Network researchers Ann Collier, MD, Seattle’s ACTG Principal Investigator, and Joanne Stekler, MD. The other 10 percent of this time is spent in a similar capacity for an HIV trials network outside of the ACTG called the HIV Prevention Trials Network (HPTN). Stekler is a member of the ACTG Network and a principal investigator for HPTN’s 069 study in Seattle.

“I've known Michael for 12 years, and in the last few I've really seen the teacher in him come through,” says Stekler. “He's been incredibly passionate about educating the community, whether about prevention or treatment or about the possibility of a cure.”

Louella also wears the hat of Chair of the ACTG’s Outreach, Recruitment and Retention (OR&R) subcommittee. His two-year term ends on May 31, 2013. It was a role he fell into after realizing early on in his work in Seattle that the ACTG could use a centralized place for all of its 73 sites to turn to for assistance with branding and publicizing studies open to enrollment. He joined OR&R in 2008 after encouragement from Collier.

“Michael has been a valued member of the UW ACTU team for 12 years,” says Collier. “His creativity, dedication and passion for sharing knowledge are phenomenal! We are so lucky to have his help and advocacy for HIV research."

Once elected to the committee, he made a presentation at the ACTG annual meeting in DC that July.

“The most fun anecdote I know about Michael was when one of my colleagues at an ACTG meeting sat down and was waxing enthusiastically about a session she had just been to about OR&R - how helpful, relevant, interesting, etc., it was - and then I learned she was talking about a session that Michael had led,” Collier says.

Channeling his skills from his high school English teacher days, Louella stepped out from behind the requisite podium during the session to give investigators, site staff and community members a crash course in effective poster creation.

“I was shocked because 200 people attended my session and I opened the presentation by showing an example of an awful flyer that had actually been used to publish a study,” he recalls. “I walked all around the room and talked about the importance of font size, contrast and color. We had all these nurses, site staff and patients with incredible medical knowledge about the studies, but they needed that graphic design help to get the message out. OR&R then created the Library of Recruitment Materials on the ACTG member site to give Network members access to effective recruitment posters.”

In his role organizing the OR&R monthly calls with members from ACTG sites all around the world and with his work in Seattle, where he competes with HPTN and the HIV Vaccine Trials Network (HVTN) for attention, Louella has become increasingly aware of the need for the ACTG to brand itself as it moves into 2013 and the future.

“The engine for ACTG recruitment in the United States in 1980s and 1990s was built out of that need for survival,” he says. “Now that this need is over, clinical research has taken a step back in people’s minds. There’s a new generation or two that we are now trying to reach who really take research for granted and how HIV medications that work today came into being. We now have to think like the other networks who have been honing their recruitment and educational skills for the past three decades. That will be our challenge moving forward.”