Serving on the NYU ACTU CAB:
Commitment. Empowerment. Accomplishment. Betterment. Fulfillment.
by Don MacIver - Chair, NYU ACTU CAB

In early 1996 my physician referred me to the NYU Medical Center's AIDS Clinical Trials Unit to determine my eligibility to enter a drug trial testing the first "triple cocktail" HIV treatment. It was a low point in my life as I was seeking any treatment that would prolong my life. But shortly it led me to the ACTU Community Advisory Board and an opportunity to contribute to the research that was quickly changing the face of HIV/AIDS treatment and survival.

My story may or may not be unique, but it is one that led me into activism and advocacy on behalf of those with HIV/AIDS. Briefly, I tested HIV-positive in September 1987; CD4s: 1450. Over the next six years, I went for quarterly lab tests and watched my CD4s gradually drop to 1250, 1100, 900, 625, 450, 280. That's when they said I could finally get AZT, one of the few drugs being used at the time. I took AZT sporadically for the next year, then didn't renew the prescription. All my friends were dying anyway, and my turn would come eventually. Then no doctor appointments for over two years. Worked out, ate well, everything seemed fine. Then it hit and hit hard! I lost 50 pounds in six weeks - 193 to 143! Bam! Couldn't eat; total weakness. I went to the Manhattan VA Medical Center and the doctor immediately admitted me. Diagnosis: pnemonia. CD4s: 71. I spent a week in isolation, and another week and a half in the AIDS ward. Another two months simply regaining my strength and eating anything that would put on weight. I went back on AZT, but I knew that wasn't the answer. All my friends thought I'd be dead within a year. And I had my own doubts. But I wasn't going to give up.

Then the seeming miracle. The NYU ACTU. The VA was a subsite of the ACTU, and my doctor sent me over for a study evaluation. Luckily, I qualified based on the criteria, but I still didn't know if I would receive the actual drugs or placebos. The ACTG320 study was to determine if the combination of AZT (Zidovudine), 3TC (Lamivudine), and Indinavir (Crixivan) would make a significant difference in the suppression of the HIV virus and the consequent elevation of CD4s.

It did, and the rest is history. In my case, I received the actual medications and my health immediately turned around. My CD4s began to rise, my viral load dropped, and I was on the road to recovery. Today my viral load is undetectable and my CD4s well within normal range. In April I will celebrate eight years on the same drugs without change and without any further medical problem. I am one of the fortunate and one of the blessed.

This coming May I will celebrate my eighth year as a member of the ACTU Community Advisory Board (CAB). When I first entered the ACTG320 study, the study nurse, Jane Dowling, asked me if I might be interested in serving on the CAB. I had never even heard of the ACTU much less the CAB, but I told her that I was willing to attend a meeting and decide if I had anything to contribute. It was April 1996 when I walked into the ACTU conference room filled with about 15 to 20 people. There were staff doctors, nurses, and researchers; community activists and advocates; parents of HIV+ children; men and women with HIV/AIDS; and representatives of social agencies and HIV/AIDS organizations.

When Dr. Fred Valentine, the Director and Principal Investigator of the ACTU, began discussing existing and upcoming studies, I was lost. Even though I had a scientific and medical background, the terminology was Greek to me! I didn't think I could ever understand it, absorb it, or be capable of discussing it in an intelligent manner. 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. It took me until my third meeting to actually raise my hand to make a statement that I didn't think would be perceived as stupid! Now, eight years later, I can raise my hand and ask as many stupid questions as I want!

People become activists, advocates, and volunteers for many reasons; but normally it comes down to knowing someone who is directly affected by the issue at hand. Think of the diseases that attract so many volunteers: cancer, muscular dystrophy, multiple sclerosis, birth defects, and HIV/AIDS. But it never seems like there are ever enough. People serve for awhile, then drift away because of relocation, job changes, scheduling problems, different life priorities, or burnout. It is no different with our organization. We have had the privilege of having some of the most talented and dedicated people serve on our CAB. As people leave for varying reasons, we need to replace them. We need the input from new members to continue the excellence we have establsihed in our deliberations, decision making, and recommendations that we make on a monthly basis. Perhaps you are reading this and would consider becoming a CAB member. Here's a brief outline of what we do.

Commitment. Empowerment. Accomplishment. Betterment. Fulfillment.

Since the first cases of AIDS were diagnosed in New York City over 20 years ago, community members have been meeting with doctors, nurses, and researchers at NYU/Bellevue. We were formally organized as a CAB in 1986, and in we 1996 approved by-laws and elected officers for the first time. Historically, we are one of the oldest working CABs of the federally funded ACTG program. That long history and the scientific knowledge and community activism experience of our members have made for ongoing and mutally beneficial relationships with both the Pediatric and Adult ACTUs.

Meeting eleven times a year, the CAB is an autonomous group of people committed to the improvement of treatment opportunities for people living with HIV/AIDS. We are charged with providing community input and feedback both to the local AIDS Clinical Trials Unit as well as its national organization, the AIDS Clinical Trials Group. While increasing awareness of treatment research and supporting clinical trials of new treatments and vaccines, we also act as advocates for participants. In addition, we participate in a variety of educational forums utilizing resources from our professional and community relationships.

Ours is a combined Adult and Pediatric CAB which represents the diverse population affected by the HIV epidemic: gay and straight, men and women, people of color, family members of the affected, etc. Our CAB has included members affiliated with or employed by the following community-based organizations: Latino Commission on AIDS, ACT-Up New York's Treatment and Data Committee, Body Positive, Gay Armed Forces Veterans Association, People With AIDS Health Group, St. Vincent's Family Services, Seaman's Society for Children and Families, the National AIDS Treatment Advocacy Program (NATAP), and many others.

When I joined the CAB in 1996 and for years after that, the agenda was almost all on discussions of new drug protocols and their efficacy in ever-changing combinations with other drugs. Today, while we still deal with these protocols, we are participating in vaccine trials and in studies as far-reaching as the relationship between depression and risky sexual practices. As the long arm of research extends across the oceans to Africa and Asia, new opportunities will open up for NYU ACTU participation and, in turn, exciting times for the CAB.

I have always told people who expressed an interest in the CAB that a vast knowledge of HIV/AIDS is not necessary, just a desire to learn. I proved that myself. And, I will continue to serve on the CAB for three reasons: one, for the friends I lost along the way; two, because the ACTU renewed my life; and three, to honor the medical staff who could have chosen any field in medicine to follow, but while others in the medical community were turning their backs on those with HIV/AIDS, they dedicated their lives to treating and finding a cure for the most devastating disease ever to hit mankind. They command my greatest respect.

Just remember these words and think about what they can mean to you. Commitment. Empowerment. Accomplishment. Betterment. Fulfillment. We would welcome you to our CAB.