Community Advisory Board - CAB

[AndyArrow]

So, I'm trying to make the most of having to reside in IL rather than IN to get healthcare.  (Don't get me wrong I like IL much better but since I just moved back IN 4 1/2 yrs ago to be closer to family and have a cheaper cost of living it's a pain)  Anyway after talking (again) with my Medicare Part D provider & the state of Illinois I am told by the end of the week everything will be worked out and I'll be able to get my meds.  -- Cuting it close but I'll make it (medwise).

Moving on -- since I want to be more pro-active with my healthcare and life in general I've just joined the Community Advisory Board for the AIDS Foundation of Chicago.  The first meeting isn't until Monday, 1 Feb 2010 so it will be awhile before I have anything to report.  It seems like I recall at least 1 other person here being on a local CAB so I was looking for some input and/or suggestions.

Wish me luck!
AA

[Miss Philicia]

I've referenced the Ryan White Planning Council here many times, but I'm not on it.  A good friend of mine is the co-chair though.  Does this board you are joining work with that or something else?  I think they only have Ryan White Planning Councils in metro areas, but I guess you're in one now so check around if this board doesn't have anything to do with that.

[Theyer]

I am sure you will earn your luck Andy and I wish you all  good fortune to go with it.
Also many thanks for the Post
mhtv

[jm1953]

Congratulations for becoming a CAB member.  I was Secretary for our Community Advisory Board for the Aids Clinical Trial Unit in Honolulu for about four years.  We worked with the facilitator and staff going over current clinical trials which were ongoing or to be available.  Our challenge was to help in making decisions about which trials might be best for us to pursue in lieu of the communities needs and which might benefit the University best.  As well as recruiting patients through our various ASO's and physicians.  I'm not sure if this is the mission of the CAB you will be working with, that is, focusing on clinical trials and opportunities for the Unit and State.  I found it very rewarding, and participated in a few studies myself.

We also worked with the director of Hawaii's ADAP who gave us monthly reports as far as patient load and the financial situation.  Sometimes we were involved in helping with the ADAP formulary as well.

Since reports given to us at our CAB meetings were given by doctors facilitating the studies, many times there was a lot of medical language used which I didn't quite get.  But I found the physicians very considerate in answering any question or clarifying something we didn't understand.  Plus they were excited to get our input.  

I think you will find this a very rewarding experience, and certainly a great way to represent your community no matter what the mission of the CAB you are participating may be.

Best of luck,

JM

[AndyArrow]

Wow JM--

It sounds like you really made a difference.

The AFC doesn't conduct any trials it's more of a broader organization that works with the government, corporations & other non-profits to improve the quality of life of people living with HIV/AIDS in the metro Chicago area.  They do everything from host the anual AIDS RUN/WALK CHICAGO to partnering with HUD on housing programs.

With is CAB program they are looking for feedback from people living with HIV/AIDS who use their services.  Let them know how their programs can be tweeked and make them aware of issues we face day to day that they might not even be aware.  Atl least thats the impression I get from the intern I've spoken to and excahged emails with.  I guess I'll really know more after the 1st.

[BT65]

Andy, congrats on joining the CAB.  They have one in Hoosierville.  I know they meet in Indianapolis, and do pretty much that things you talked about.  I know you'll do an excellent job.

[J.R.E.]

Congratulations Andy !! Wishing you the best, keep us updated.


Ray

[poet]

I was on a Cape Cod CAB which was interesting, in part, because P-town had its program, Hyannis had its program (all part of the same larger organisation) but the population affected in the former wasn't the same as the latter (which included women); there were lunches served in the former, a foodbank in the latter and our sign couldn't include the word 'aids' in Hyannis (ASGCC: Aids Support Group of Cape Cod). 

I mention this because I have been pressed to get involved with the CAB in central Maine and once again, services, funding, etc. need to come from the area serviced rather than, say, contacting New York or Boston which are much larger cities.  There was a hint of an AIDS walk and I immediately thought, 'well, perhaps in Portland, but in Augusta?'  Among my suggestions to a board member has been starting with a survey of members to get a sense of basics: do they have a ready means for travel aside from medical appointments; to what degree are they at all comfortable with others knowing about their diagnosis; can we contact local pharmacies which have many of 'our' patients and encourage them to do a round up styled fundraising effort?  Getting a dialogue going between the Cape and Maine since the sizes should be similar and many of the issues already addressed on the Cape might be the same (why have to reinvent the wheel?). 


Glad to hear about your involvement!

[Theyer]

How did the meeting go Andy ?

t

[AndyArrow]

Sorry I sort of disappeared off the face of the earth for awhile (well at least these forums).  I was going crazy calling the state, my medicare part D provider and my pharmacy trying to get them to coordinate my benefits.  It took many days and tons of phone calls to get everything settled before I ran out of meds.  Thank goodness I know the pharmacy manager and that it's an HIV specialty pharmacy and he also made lots of calls on by behalf.  I know a lot of people have had trouble with Walgreens but I can't say enough good things about mine.

Moving on ... The CAB meeting went pretty well and it occured on the 1st and Illniois's primary was the 2nd so I got a nice printout about how the candidates answered (or didn't bother to answer) and questionnaire put out by the AFC.  A lot of time was taken up with AFC policies and programs and pushing awareness of "Lobby Days" March 16th & 17th in Springfield, IL.  Illinois has several proposals to cut funding to some HIV/AIDS programs to help solve their budget crisis.

AA