CAB MEETING MINUTES

June 28, 2005

Three CAB members and 3 staff members attended the June 2005 meeting of the UTMB Galveston AIDS Clinical Trials Unit Community Advisory Board (CAB).

Report from Dr. O’Brien  

·         Dr. O’Brien discussed that the current proposal for “refunding” the Clinicial Trials Unit was being put together by the ACTU staff.  He also reported that the name will be known as the CRS (Clinical Research Site).  He further explained that the ACTG and all other research networks are refunding through two separate competitions; both the network and clinical trials unit levels.

·         Units can align themselves with any of the final approved networks.  UTMB will focus on HIV/AIDS drugs and therapies as well as microbicides.  Current trial A5202 (Sustiva vs Reyataz and Truvada vs Epsicom) is of special interest.

·         Dr. O’Brien asked the CAB if they would write a segment of the RFA detailing their input from the CAB members’ point of view to support refunding of the ACTU.  It was agreed that  Robert, John and Dennis would meet the following day to work on the wording.

·         Clinic visits are up to nearly 400.

CAB News

• John and Dennis discussed personal problems with UTMB and Virology Clinic, past and current issues.
• John expressed concerns that the site is currently operating short staffed, with only a team of three (3) research nurses and one of the three also acting as protocol coordinator.  He brought up his negative experiences with the TMC 114 study and the perceived lack of concern shown by the staff during his recent staph infection.
• Dennis suggested that CAB might consider having some of the monthly meetings off UTMB’s campus as it used to in years past.  He felt that a more publicly accessible location might increase interest and membership.  Dennis also brought up the need to provide direct access to medical care if any problems arise during a study.  He stressed that health issues need to be reported to the staff person monitoring the study.  He feels that perhaps they need to be interested as they may have either a source in the study or some bearing on the results.  He also suggested a follow up or exit interview for ACTU participants.  Dennis also spoke about his desire to serve and help others along with his continued frustration of the Community Advisory Board in general.  Dennis stated that his suggestion for a Peer Support Program at the clinic had not been taken seriously and that his suggestions in general had not received proper consideration.  Dr. Bell explained that external agents participating in clinic activities have certain restrictions due to the need for confidentiality, and for that reason, among others the peer counseling idea would be difficult to implement.
• Robert shared with the group that Dr. Bell informed him (as well as some of her other patients) today that effective Sept. 1^st she would be leaving UTMB due to her contract not being renewed by the University.  CAB was surprised and unhappy about this news.  The members all agreed unanimously to write a letter to the Dean of Medicine (Dr. Parisi), and copy Dr. Stobo, expressing their disappointment and concern for Dr. Bell as well as continuity of clinical care.  The CAB is also concerned about the longstanding relationships and comfort that patients have with her after getting over Dr. Paar’s departure. 
• There was a discussion of financial issues and their impact on clinic-based clientele and operations.

 Community Outreach

 ·         Dr. O’Brien shared that he will be going to Ft. Bend County to visit and recruit from the client base there.  He has made a shift in outreach tactics that seem to be more effective; contacting providers and getting the referrals directly from the physicians.  Denise will be joining him on this outreach effort.  

·         Dennis spoke in support of Denise and her empathy and involvement in AIDS education.  He also spoke highly of her dedication and outreach efforts.  

HANDOUTS:

·         Copies of CAB By-Laws

Any questions, please call 409-747-0214 or toll-free 877-324-ACTU (2288).  You can also email Denise Justice.  While reservations are not required, calling in advance helps us better plan for food and parking tokens and we like to hear from you! 

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