Roses are Red
Violets are Blue
I had other thoughts
and split the Blog in two.

Disney With Diabetes is now part of http://AllEarNet.com. We figure joining with the best unofficial Disney site will get more eyes on the site and help more folks.

The diabetes section is: http://allearsnet.com/pl/diabetes.htm

New miscellaneous ramblings about diabetes are being posted at Your Diabetes May Vary

See http://YDMV.net
aka http://ydmv.blogspot.com/

Of Independence and Angry Mobs

When in the course of human events at the CDW Friends For Life Conference I was in a discussion about data and how to get it to the care team people who needed it. The moderator asked about care teams and who were the key players we rely on to care for diabetes, specifically the endo, the CDE etc..

So everyone around the room was talking about how often they have a doctor visit and how much time was spent with the Dr. verses the nurse at a visit and so on. Folks talked about doctors they love and other told horror stories of doctors they bailed out on.

After a while of this the guy next to me, Mark, said something so brilliant it stopped me cold. He said, and this is a close as I can get to a quote;

‘My wife and I are our daughter’s primary care team.”

Doing!

That may have been the single best sentence of the week. I would say we hold these truths to be self evident but it obviously wasn’t evident to anyone else in the room until he said it. Then there was unanimous support for the idea.

Now I must be an idiot. (OK I know many of you are likely to have come to this conclusion yourself.) Our doctor has been making this point to us for years. He has no interest in us printing out charts and data just for him to see. Now if we use software to help us manage the care we give our kid and we want to work through an issue with him, he is more than happy to have a look at some printouts.

The next day at the CWD conference in one of the CGM meeting we were directed into talking about how CGM data could be sprung free from the little receiver and shot out to other devices and or members of the team. Specifically we were instructed to talk about how we would feel about it if the doctor could get be alerted to the data in near real time.

So off we go about getting information to the doctor. The device makers were read hot on getting data to the doctor, like doctors around the nation are sitting in the office with nothing to do but wait for the red phone to ring or something. That must be the way to getting stuff sold and or paid for, “get the doctor the data.”

Well in this second session, we the people staged a little uprising and were insisting we needed the data ‘cause we are the care givers when the manufacturer’s rep said something along the lines of, ‘Well, you know, only the doctor can make a change in therapy…”

This was followed by laughs and shouts to the contrary from the crowd. I did a healthy business in selling pitchforks, torches and other angry mob supplies.

The same doctor centered imagery was prominent in the displays around display booths in the trade show. Concerned looking older male models dressed as doctors pointing at some point on a graph on a computer screen so some younger female model could pose as a mom in a admiring nod while the picture was take.

So here is a problem. The gadget manufacturers don’t get the big idea that families are the primary care givers. I guess they can be forgiven if only one in twenty of us has the presence of mind to say the family is the primary care team in a focus group meeting.

We all need to get a grip! Software, IF it is going to be used in T1 households, is going to be used by primary care givers mom and dad or by the T1 patients themselves.

Before we got our first diabetic kid out of Children’s Hospital at age 9 Children’s was talking to us about looking to independence. Our goal was to raise a kid to independently manage his (then her when the second dx happened) own diabetes.

Someplace along that path to independence has to be for families to manage the freaking condition without an umbilical cord back to the doctor’s office. Yeah the doctor knows how to manage diabetes, our job was to learn it and teach it without that care becoming a teenage rebellion issue. (Sounds easy enough right?)

So all you manufacturers out there, make tools that support independence. Tying us tighter to a doctor electronically isn’t the goal. It is the opposite of the goal.

Independence is the goal.

Children with Diabetes Frineds for Life Conference Session Notes

Talking to Your Teens - Natalie Bellini & Dr. Joe
It's Not Just a Numbers Game - Joe Solowiejczyk

I think these two sessions at the conference were outstanding. IMHO the whole of both was more than the sum of the individual sessions.

Natalie and Joe roll played the stereotypical fights between parents and teens over diabetes issues. It was like a “Best Of” compilation album sold by Time Life on late night TV. All the classic titles;

• You Don’t Take This Seriously


• Your Gonna Die!


• What IS Your BG?


• Did You Check


• and the instrumental classic "Hover Over The Meter While They Check.

…. this and much much more. All your for just for just $19.95 plus shipping and handling…

Now their point, and this was a bit of a shock to me, wasn’t for us to brush up our arguing with our teen techniques. No their point was and is that as parents our stuff is our stuff and their stuff is there stuff. We love them. They love us. As parents we need to lead the family away from the classic fights and into sing another tune of parent teen communication. (can I beat this tune thing (drumb) any harder?)

Let the kids know you love them. Touch them. Tell them your fears as your fears knowing they may not share them. Oh and don’t hover over their shoulder while they test - Apparently it doesn’t make the meter read faster. (Who knew?!?)

…and more! Much Much More!

Joe is brilliant, wild and crazy.

It is worth the price of admission to the whole conference just to hear him explain what you should do if you expect your teen to come in and say, “Father, I have realized I need to step up and be more proactive in my diabetes care… and I will clean my room… and be nice to my kid sister.” The punch line is hysterical but in my book Joe should have a well earned copyright on his material so you will have to go to a conference to hear it, at the very least I am not giving it away. (I do wonder how well that bit translated to the folks from UAE.)

My take away from Joe was about actions, non-negotiable actions, in diabetes care. As parents we need to be consistent about boundaries. We don’t have to like diabetes. Our kids don’t have to like diabetes but just like dating (the dating analogy is also a fantastic piece of Joe’s coaching) or other household issues there are non negotiable actions like be home at midnight that have to happen or there are consequences. We can’t fall into the trap of feeling sorry about the diabetes that allows slack on the care non-negotiables.

Now I don’t mean to make Joe sound like a drill sergeant (but the though of Sgt Joe is a laugh, Sgt Pepper maybe...)He is as far from it as possible and there in lies the key to his message. I make a huge separation between serious and solemn. I think Joe is very serious about diabetes care and I am equally confident his isn’t often accused of being somber or solemn.

Now at first these two sessions seem very different, touch feely non argumentative dealing with teens vs. you don’t have to like it but you gotta do it non-negotiable Joe. The truth is they were both right on and both need to be part of the deal. Keep your junk, your junk, love the kids, be honest and firm on the non negotiable actions.

They are teens – keep in mind your own teen years and put into that the amazing responsibilities type 1 kids are faced with and be impressed.

I need regular reminding of the skills these things require. I think we do OK as a diabetic family but I figure some coaching is a good idea. I look at it this way, Tiger Woods has a swing coach so nobody is too good for some coaching.

Natalie and Joe are Animas team members. I have very high expectations and I can be as tough on Animas as any of Natalie and Dr. Bob’s teen arguments. But I can be taught so I have to say that I am please that Animas appreciates the need for and supports the non technical coaching that these folks do so well.

Yes Audrey you can quote me to me (and how about having them do there bits back here in Philly instead of everyone flying to Orlando? You have a nice meeting room there on the second floor in West Chester. ;))

Over the Last few months I have seen a number of JDFR press releases about their Industry Discovery & Development Partnership Program¹ (IDDP.)

As a proud supporter of JDRF’s efforts to find a cure I am typically happy to read of some strange sounding, very technical program, to address some specific cure avenue or therapy for living with type 1.

Unfortunately I am curious. That curiosity has been trained with a degree in finance and a few decades of reading the business news. I kept wondering about things like “Partnership,” “participation in value creation,” “collaborative relationship,” and the particularly interesting “up to a level of $5 million per program.” In short I wanted to know what the deal is.

So I scoured JDRF’s web page. I sent a request into their contact us link. I found and heard nothing to end my curiosity. Some time passed and another press release came out. This had an email for a contact at JDRF. So I emailed some fair but blunt questions.

• What is the relationship between JDRF and the for profit firm?
• It appears JDRF is acting as a source of venture funding, what returns are expected, contracted or required?
• What percentage of JDRF expenditures towards cures is involved?
• Where is there a statement about JDRF decision makers and conflicts of interest involving investments in these IDDP firms?

They didn’t email back answers - They set up a teleconference.

I did more homework.

I was very impressed and please with the candid answers they provided.

Among the key points we talked about are:

• JDRF has recognized that support is needed to transition academic discovery through the process of product development, trials and approval and into the daily lives of diabetic patents.
• The partnerships are for very specific issues, bringing a product through trials for example.
• These IDDP programs allow JDRF to help improve the quality of life for T1 families by encouraging movement of for profit firms into the market place with promising therapies.
• These agreement help focus entrepreneur talent to being research through trials and to market.
• The for profit partner must meet specific milestones to qualify to receive payments.
• The for profit must demonstrate a matching commitment to the partnership program.
• If the for profit chooses not to bring products to market based on the partnership, JDRF may use the intellectual property to bring products to market with others for profit firms.
• If products come to market as a result of the partnership, the for profit will return a portion of revenue from the product to JDRF, up to a negotiated multiple of JDRF’s research support of the program.
• This return of research funding is negotiated on a case by case basis. It is a means of continuing research funding for other promising projects related to JDRF’s mission.
• While at this time these partnerships represent a fraction of total JDRF research funding (approximately 10 to 15%) it is hoped they can have a positive impact on quality of life.
• JDRF treats these partnerships as it does other research funding. Specifically they are included as research support under program activities on JDRF's financial statement of activities. They are not broken out in JDRF's annual report.
• The partnership programs are held to the same JDRF mission standards as other research expenditures and are a means of supporting specific program that are directly related to JDRF’s mission.
• JDRF has specific ethical guidelines precluding conflicts of interest².

I was able to find a very detailed outline of one of the agreements in the 10K report of one of the IDDP companies.³ It was the full agreement redacted slightly to remove a few specific confidential items. From this and another firms annual⁴ report I found that the possible return of research funds was between 3 and 5 times the JDRF funding.

I was comfortable with the explanations JDRF provided. I appreciate their need to balance disclosure and information overload. While many people would be more confused by some of the information I read than enlightened, I think that it should be more readily available.

I would like to see JDRF’s financial statements break out IDDP funding from more traditional pure academic research. (I would also like to see the funding for both IDDP and academic research broken out into key JDRF mission goals, like; Beta cell replacement, Beta cell regeneration, Auto immunity, Complications, Artificial pancreas, etc.)

JDRF’s 2006 financial statement⁵ says that 167 million was spent on programs. That is 86 cents on each dollar contributed. Management and fundraising was less than 15 cents out of a dollar contributed. This is very good ration of programs to operations. Of the 167 million 131 went to research and 36 to public education. I am told that IDDP programs are bout 10 to 15% of the research expenditure. Like I said I would be happier to see that broken out.

I have seen enough financial hanky panky that I would like to see JDRF statement of financial ethics backed up with some kind of an independent confirmation of compliance, particularly where up to 5 million dollars per project is being advanced to for profit firms to speed bringing advanced technologies to our children’s care. To me work to a cure is too important not to have such ethical practices prominently stated and audited.

Bennet

Dad to two T1 kids.

If you would like to join our effort to help JDRF click here to buy a
Love Ya /Mean It Pin!
http://badshoe.com/lymipin06.htm

Useful Links and notes.

¹ JDRF IDDP Program
http://www.jdrf.org/index.cfm?page_id=103249
http://www.jdrf.org/files/Industry/handout%20industry%20doc.pdf

² JDRF Statement on Conflicts of Interest

http://www.jdrf.org/index.cfm?page_id=105584

³ Sangamo BioSciences, Inc. (Nasdaq: SGMO) SEC filings

http://phx.corporate-ir.net/phoenix.zhtml?c=120938&p=irol-SEC

⁴ Transition Therapeutics Inc. Financial Reports

http://www.transitiontherapeutics.com/ir/financials.php

⁵ JDRF Financial Statements

http://www.jdrf.org/index.cfm?page_id=100991

I read a lot of type 1 diabetes news. Google is particularly good about sending me a daily email with news clippings. If you are interested in getting the same thing click here:

http://www.google.com/alerts?t=1&hl=en&q=diabetes+type+1