Noshima: Any suggestions for making the HIV update better?

Transcription

1 Realizing some members on the call were not able to attend the last CAB meeting, Noshima started things off by introducing herself and the other UNC members who will now be assisting with the CAB. After introductions, Noshima asked the CAB if anyone would like to share anything about their experience with at the latest HIV Update. CAB member: I had a great time. I attended with my best friend, who is a RN case manager. I very much enjoyed Dr. Cohen s What Happens Next talk which had a strong focus on prevention. Dr. Eron s where we are and where we are going talk was also nice. He discussed the therapies we have now, and what patients think about our advancements. Dr. Wohl s aging and HIV talk was very interesting. He talked about older populations living with HIV and even when into topics of nutrition and the importance of diet and exercising. One of my favorites was Michael Harney, who is a prevention educator from Asheville, and he gave the Best Practices and Harm Reduction with Needle Exchange Program lunch n learn. It was very innovative as he described the grass-roots process and the importance of having clean needles. Lastly, there was a great panel discussion with Suzanne Nagie, Dr. Wohl, and others. CAB member: I honestly wasn t as excited. This was my third time attending, and I felt it was the least of the 3. I mostly just enjoyed Dr. Wohl s presentation, where he beautifully linked health promotion and nutrition with his clinical pieces. Noshima: Any suggestions for making the HIV update better? CAB member: A lot of people from Suzanne s presentation couldn t really understand it all because it was so medically based. It needed to be simplified. The only thing that was clear in the talks on prevention was the needle exchange discussion. Even the mental health and substance abuse parts were a bit unclear. They really needed to realize who was in the audience and tailor their discussions to who was attending. Maybe they should have looked more at who signed up the conference in the first place. Noshima: Are there any questions on ACTG or HPTN meetings? To make sure we all have this clear, Michael Wilson will be attending the ACTG as an additional CAB representative, along with David Palm. Carl Bruton will be attending the HPTN meeting. We will make sure everything is in place for members beforehand. CAB member: I agreed to be a co-moderator during the community staff meeting during the ACTG meeting. The main topic will be how we provide outreach to populations that don t usually have the means to get regular care. If any CAB members have thoughts or experiences with that, please feel free to let me know. Noshima: Now let s discuss this community research symposium. I imagined you all wanted something like a half day including presentations and talks. Let s discuss who we would like to have and set dates and times. CAB member: I would love to hear any updates with the cure collaboration between GSK and Cura Therapeutics, especially within the last year. Maybe we could reach out to Dr. Margolis. CAB member: I think the offer for a symposium came from Dr. Wohl as a way to educate our group on topics we know less about. In CAB meetings we ve talked about topics such as long-acting formulations

2 and how those might be applied into treatment, and we ve talked about antibodies, but I don t think we have so much grounding as to why those are so important and what they do. I think it d be great for us to get a new and better understanding of what these new directions in research are and what their implications are for cure. CAB memeber: I think the point of the symposium was to get more in depth in a specific topic and not try to cover a larger ground. So I think you re right on point in thinking about talks around something more targeted like antibodies. Noshima: So the idea was do a bunch of topics or? CAB member: Maybe doing just a few topics, but we haven t really worked exactly how many or how long each topic would be discussed etc. Noshima: How much time would you want to see for each of these topics? CAB member: Initial idea was to have a kind of retreat. Topics would be covered offsite not at Dr. Wohl s or anything. Maybe doing a half-day on campus or elsewhere. We could potentially cover a couple of topics within a half day, whether it s a weekend or whatever. We didn t have a place or anything sorted out either. Noshima: OK I think I m starting to understand. Initially looking through notes and speaking to Dr. Wohl I was a bit confused. It sounds like yall were really thinking of a retreat where you d be off campus and stuff as opposed to the symposium idea. CAB: Yeah that was my understanding. CAB: I think this was inspired by information from the Cure centers and how they had gaps of communication even internally. It would be good to link in the lab type of research, the clinical side, and maybe cure, and how all those are connected, because I don t really understand how that works. Each of these areas seems so siloed. CAB member: I thought we were more so looking at having an environment with community interacting with researchers. Not sure which community members, whether those that work in the field or not, because I don t think we got that in depth with figuring things out. Noshima: Retreats might cover a topic or two, but usually they focus on renewal, team building, and maybe planning for future years. We all need to agree on something, and we need to figure out exactly what we want to do before we can send invites and decide on dates. David Palm: Maybe we could have a technical component and a social sciences component. One thing that would be interesting to discuss would be an aspect of cure research where we have to think about participants doing biopsies and treatment interruption. Depending on who you talk to, there are people that are ok with the blood draws, and different kinds of biopsies are more favorable than others. The idea of treatment interruption can be frightening because you re asking people to stop their care. Some people might be ok with that, and for others that might be a lot. It would be interesting to discuss this and more about what cure research could really be asking of participants. What are some ways we can better understand what they are being asked to do. I know of a trial in development that would involve

3 treatment interruption, but the testing involved in the study makes it so risks are minimal. How do you change people s minds with things like long-acting injectables? CAB member: Maybe we should get some of the researchers that have not presented to us. We could invite them to an environment where they can share what they are doing, and we can have community members there too. We seem to be alternating between the ideas of retreat vs. symposium. CAB member: Maybe we could have a retreat to plan for a symposium. Noshima: Everyone seems to have some great ideas for a program. If we are doing a symposium, are we going to invite other CABs and are we going to invite the general community? CAB member: This was my understanding from the beginning, but I could be wrong. I think a retreat and a symposium are good ideas, but we need to at least figure out which one we would do first. CAB member: If we have presenters and researchers, it should maybe just be our CAB in attendance so the discussion is more tailored. I think there would be better and deeper insights and details with just our group. Noshima: If we are doing the community research symposium, where would you all like to have that? CAB member: How many people do we think would be attending? Noshima: If we open up to CFAR CAB and ID CAB we might be looking at 60+. CAB member: Well we just did the HIV update at the Friday Center. It is a great space. Could we consider there? CAB member: A Hotel conference room would work. CAB member: I m not sure when we want to do this. It seems like there are a lot of conferences right now. Adding this in the near future could be super-saturation. Noshima: I was thinking about fall - maybe September. CAB member: Early winter doesn t work because of holiday schedule. And fall may not give people enough time to get us on their schedules. CAB member: Maybe we should look at spring due to conferences. CAB member: I was thinking spring would have the most conferences. Fall or late winter are probably better. Holiday season is pretty much out. Noshima: We probably have 2 or 3 investigators according to topics mentioned that we could reach out to during the suggested time frame. What days of the week work best for you all? CAB member: Any other day but Monday

4 CAB member: Fridays CAB: Fridays work well. Noshima: Who can help me draft the letter in terms of saying what we need to in order to invite the people we want. CAB member: I could help draft the letter, but I wouldn t really know who to invite. I actually have a template we could use. Probably need to say something like, Would you be able to attend on this day at said time, and take what we can get with attendance, because otherwise it could be way too complicated. Noshima: We have 8 Fridays within September or October. CAB member: Can we do a doodle poll with those days? CAB member: I agree. But maybe we should hone in a few dates instead. CAB member: there is a big meeting at the end of October. Noshima: I will send doodle poll for first 3 Fridays in October (7, 14, 21). CAB member: I will be studying at UNC during the daytimes, so I will not be able to attend any of those dates, but whatever you all decide is fine. Noshima: As far as topics, do we want to make cure research the main topic with sub topics like antibodies etc.? CAB member: I do a lot of research work with Dr. Allison with To Beat HIV. I think she d be a great person to invite and have speak. *CAB agreed on plan so far. Confusion was cleared about the difference between a retreat and a symposium. A retreat would involve something like a park or outside area, while the symposium would use something more like an office or conference room. Noshima: Any other providers or PI s that you would want to invite? CAB member: Maybe we should invite someone more from the behavioral side. CAB member: That would be a great topic on in itself. For example, what would really happen if a cure happened? That could be a whole day alone just for that topic. We really need to keep to 1 or 2 topics. Noshima: So in summary the symposium will have a cure focus, I will work on the letter and work on sending out a doodlepoll, we should ask Dr. Matthews if she d be willing to attend, ask providers dealing with latent reservoirs and using cancer medications to attend as well, maybe get someone from lab to speak on what they are doing with cure, and have talks on antibodies and long acting formulations (maybe ask Dr. Cindy Gay).

5 CAB member : I m helping in hosting an HIV awareness fashion show called Red is the New Black. It will be held June 4 th in the NCCU Miller-Morgan auditorium from 1:00 4:00. Actress Cheryl Lee Rouse will be in attendance, along with Mica Sherman from WRAL. UNC CFAR is the main sponsor. It is open to the public, and it s free. I will send an to Noshima to send out to the CAB later. Noshima: I just want to give an update on HPTN 085/HVTN 704. We are looking to be site activated this week. We used the Fred Hutch central IRB, and we are approved. We do have potential participants for screening lined up, and we re hoping to have our first 2-3 screening in the first week we get back from the HVTN annual meeting. The next CAB meeting is scheduled to be a face-to-face meeting on July 17 th. Sept 18 th will be the next call, and November 20 th should be the next in-person. We do have 1 protocol to go over for next meeting. Dr. Hurt will be in attendance to discuss HPTN 083 the Cabotegravir longacting injectable. Documents will be uploaded to the site. CAB member: I will be in Germany and won t be able to make the next face-to-face meeting. Noshima: Thank you everyone for a great meeting.