Seventeen-year Community Advisory Board veteran Don MacIver tells people interested in becoming involved in their local CAB that extensive HIV knowledge is not necessary, only a desire to learn.
“At first, the terminology was Greek to me,” MacIver says recalling his first CAB meeting. “I honestly didn’t think I had a place there, that my activism could be more effective in a different venue. But, what the heck, I would come back and see if I could become a participating member of the CAB.”
And participate he did. MacIver joined the New York University AIDS Clinical Trials Unit CAB in 1996, serving four terms as Vice Chair and an impressive twelve terms as Chair. He has also represented his CAB on the Global Community Advisory Board as one of the GCAB Co-chairs since 2010. During the ACTG’s Network meeting in July, he announced he would not seek a second term as Co-chair and would resign his positions on the NYU CAB this summer. His departure from a leadership role for the first time in almost two decades without interruption prompted his fellow GCAB members to present him with the “Act the Gentleman, Be the Gentleman Award” during the final community session of the Network meeting.
“This unique award reflects my many years of service to the ACTG while promoting civility, integrity, gentleness and mutual respect in our dealings with one another,” MacIver says.
Sharon Maxwell, who served as one of the GCAB Chairs with MacIver, created the award.
“Don has the capacity to always see the big picture and how the community members fit in,” says Maxwell. “He was a pleasure to work with and I will miss him and his great wit.”
In addition to his work with the ACTG, Don has served since 1998 on various CABS, Executive Committees, Trial Study Teams, and Ethics Oversight Committees for the U. S. Department Veterans Affairs, and is leaving those one-by-one as his terms expire.
Diagnosed with HIV in 1987, MacIver watched his health decline and his friends pass on. “I took AZT sporadically and then didn’t renew my prescription,” he recalls. “All my friends were dying anyway and my turn would eventually come.”
After rapidly losing 50 pounds in a little over a month in 1995, MacIver sought treatment at the Manhattan Veterans Affairs Medical Center. There, his physician told him about the NYU ACTU and encouraged him to enroll in a clinical trial. He qualified for the ACTG320 trial and his health began to improve. Participating in the study also introduced him to the NYU CAB – one of the oldest CABs in the ACTG network. MacIver credits his involvement with the CAB for altering his outlook on life.
“I continued to serve on the CAB for three reasons – for the friends I lost along the way, because the ACTU renewed my life and to honor the medical staff, who could have chosen any field in medicine to follow,” he says.
MacIver encourages involvement in local CABs. “We have had the privilege of having some of the most talented and dedicated people serve on our CAB,” he says. “As people leave for varying reasons, we need to replace them. We need input from new members to continue the excellence we insist upon in our deliberations, decision-making and recommendations that we make on a monthly basis.”
The NYU CAB meets eleven times a year with the goal of improving treatment opportunities for people living with HIV/AIDs. Members serve as advocates and educators. MacIver says he finds inspiration in the international GCAB and CAB members.
“I have been especially impressed with the GCAB representatives from the international sites who face many more obstacles than we here in the United States, including apartheid, famine, multiple tropical diseases, co-infections, despotic governments, civil war, wars of independence, state sponsored executions of homosexuals, stoning of women accused of adultery when it is really rape, etc…,” he says. “These representatives have gentle spirits, passion, compassion, dedication, and an urge to learn that is amazing. I have been honored to know them and count them among my friends.”