Kindly Dr Txt

There is a raging thread over at CWD that started as a MiniMed reaches out to Cosmo families and has digresses into a flame festival of brand loyalty. We T1 parents are fairly rational people for the most part, necessity forces it on even those like me who resist it. You may not be able to prove it by that thread.

Diabetes is a deeply emotional thing for us parents for a whole lot of reasons. Not the least is that it has taken the illusion that we can protect our kidsfrom us.

I think that what works of me isn't necessarily what will work for anyone else. What works varies from family to family.

For example I can't be bothered with scales. Lots of folks love'm. I see these long online conversations on the virtues of features found on scales. I don't like scales. Starting with the one in the bathroom. That doesn't make scales bad for them or right for me. Our approach to raising kids with diabetes is different, so we use different tools.

These are big companies we are taking about. While their products keep our kids alive, we need to be emotionally separate from them.

Here is why. We need to be open to change. Maybe there is a better gizmo, it uses less blood or the light works better or the case comes in a color that makes our kids happy or what ever. What ever works, works.

In stead of fighting among ourselves over brand loyalty based on petty differences we should be focusing our attention on the companies we use and challenging them to do better. Much better.

For example: Wouldn't it be great if all meters, CGMs and pumps spoke the same data language? We could use what ever and look at our data with the programs the meet our needs. Heck the scale could bluetooth the weight to a program that flips that into carbs and shoots that barb value into the pump. (But even then I am not using a scale.)

If we all said in a clear voice that we will only buy products form companies that work towards open data standards, that let us choose product that work for our families and share common data in a common format so we can analyze it in programs based on features not proprietary data sets, they would, eventually, deliver it. Kicking and screaming and probably suing each other along the way.

But if we let them build brand loyalty on the basis of emotion that covers for lack of innovation, our kids loose, all our kids.

We deserve better from all of these companies. We will not get it unless we speak to them about our needs. To be honest I don't think they have a freaking clue what we need or want. They are in a market driven by the doctor writing a prescription and the insurance company paying and who the hell gets the prescription they don't know. They know they get years of revenue as that rx get refilled. Don't much care who or why it is being filled for.

We aren't customers, we aren't clients, we aren't patients, we don't matter. We are not part of the Doc+Rx+Insurance=cash for everyone equation.

Look at a big pharma diabetes dog and pony show, ad in amagazing, trade show booth what ever. The graphic is always a concerned typically older person in a white coat, aka the Kindly Doctor (typically a white male but not always but always with a little graying hair) looking at his or her PC while the harried younger mother (never a dad, ever) has an expression of concern and gratitude that the Kindly Doctor is looking at her child's chart on the screen. Sometimes Lassie does a cameo as if to say little Billy has been saved from the burning barn of blood sugar.

As if.

Yet they make that image with care to reinforce the idea that the system of doc, big pharma and big insurance are in control and they will take care of us.

How much time do you get with your doctor?

10 minutes every three months? You think she/he is gonna take a text message from your blood meter? Would you like it if five of your ten minutes the doc was reading texts from other patients meters? Would you ever go back to that quack?

We are our kids primary care givers.

We need to be part of the equation.

Who is SymCare?

Amy T has a post about SymCare on Diabetes Mine. I was trying to post a comment there but I guess she got smart, 'cause as soon as her server saw me coming it took a dive and wouldn't let me post. No dummy that Amy Bennet scares people away. Better have the site go down that have him post. LOL - Love Ya/ Mean It, Amy.

So who is this SymCare in West Chester PA? Were are they in West Chester? I looked for an address. It is no place on their web page. The FDA has an address for Symcare. Same address as Animas'.

SYMCARE PERSONALIZED HEALTH SOLUTIONS, INC
200 lawrence drive
west chester, PA 19380

As for the FDA clearance in the press release, it is "substantially equivalent (SE)... Clinical Chemistry."

inTouch is an old name for a LifeScan software program. Looks like they dusted of a golden oldie, the copyright on this inTouch PDF is 2001.

This time they mention wireless so all the pictures of hooking up you meter to the back of the PC will be replaces with trying to sync wireless.

SymCare was out hiring reps. Google returns a lot of hits for old Job postings. And a few lines in programmers resumes.

SymCare kinda feels like a marketing campaign waiting to happen. Wireless updating of BG to the doctor's office anyone? If it is, Mark has something really smart to say about that.

The first post I wrote for YDMV (back when it was part of another blog) was based on this simple idea that Mark expressed at FFL, "My wife and I are our daughter’s primary care team.” Mark is smart.

Remember what Mark said.

From the News Wire: Model Artificial Pancreas Pod w Navigator or Dexcom

I found the OminiPod and Navigator or Dexcom interesting:

Researchers Successfully Create Computer-Simulated Model for Evaluating
Artificial Pancreas
http://news.prnewswire.com/DisplayReleaseContent.aspx?ACCT=104&STORY=/www/story/03-31-2009/0004997472&EDATE=

SANTA BARBARA, Calif., March 31 /PRNewswire/ -- A key step toward the successful development of an artificial pancreas for patients with diabetes has been achieved, according to new research published in this month's issue of Diabetes Technology & Therapeutics.

Researchers at the University of California at Santa Barbara, Sansum Diabetes Research Institute and Stanford Medical Center have effectively created a computer-simulated system for evaluating an investigational artificial pancreas comprised of the OmniPod(R) Insulin Management System--including the OmniPod insulin pump and Personal Diabetes Manager that controls it--and a continuous glucose monitor, in this case either the FreeStyle Navigator(R) or the DexCom STS7(R). The system also includes an algorithm that automates the interaction between the pump and monitor, and facilitates the running of a variety of tests and challenges to the software and component devices. The UC Santa Barbara-developed software and algorithms are also being used with a number of other pumps and monitors in developing additional systems.

More at the linked site.

Looking for PA People Again

I Want You To Lobby Your Elected Officials


This is an update of a Post from August.

Safe at School legislation has been re-introduced into the quagmire we lovingly call Harrisburg. We need this and there is nothing like letting your elected officials know you (an actual registered voter) are paying attention. I don't see a PA Senate version yet.

It as easy as 123.

1) Identify your elected dude or dudette
2) Send them a letter
3) Send it again in a few months.


1) Go here and enter your zip code. It will give you your state representative.
2) Here is a little draft letter only minor modifications are required (edit out the wise cracks in the brackets) or grow your own.
3) If you hear back send a thank you note. If you don’t send the letter again a little closer to the first Tuesday following the first Monday in November. In fact send another one in mid October any way.


Dear (Insert the name your dude or dudette here, see 1 above.)

Please ad your sponsorship to House Bill 1113 P.N. 1309 Safe at School legislation for Children with diabetes. This legislation is desperately needed to help students with diabetes succeed.

We are the parents of (Your actual number of T1 Kids! I used two, if you have less than two actual type 1 kids please change the plural children to singular child as appropriate in the following sentences. Oh and congratulations on only having one.) children with type 1 diabetes. Type 1 is often reported in the media as the ‘more serious’ form of diabetes due to the higher levels of testing and insulin use it requires.

Type 1 is an autoimmune disease and is in no way the result of diet or exercise. All type 1 children and adults require insulin throughout the day and will continue to need it until a cure is found. Both our children use insulin pumps, manufactured in the Commonwealth, to deliver that insulin instead of 4 to 6 insulin shots a day. (LOOK It is good for the state economy! - Sucks big time for us but hey every silver lining has a cloud....)

(Ad A PERSONAL PARAGRAPH! follow with 'more work is still needed' like sample below)

While significant progress has been made many school still refuses the safe at school best practices that this bill would insure. For example many children have only been permitted to participate in school trips if a parent accompanies them and despite doctor’s specific recommendations are not permitted to carry and use their glucose monitoring equipment at all times.

This legislation is desperately needed. It is a safe and appropriate response to a chronic medical condition. I look forward to hearing you have added you sponsorship to the bill and your efforts to getting it passed. I hope to be able to share with the tens of thousands of other Delaware Valley (Or your local walk) type 1 families who support the October (Just before elections.... not that we are watching or anything... but maybe we'll follow up then) Juvenile Diabetes Research Foundation Walk for the Cure that you are working to improve the lives of type 1 kids by keeping them Safe at School. (OH YEAH DID I MENTION - THERE ARE TENS OF THOUSANDS OF REGISTERED VOTERS INVOLVED? right before Election Day? Oh I did mention that? Sorry.... Not!)

Respectfully

I dount it is this guy anymore..

This was also part of the long ago quest for carb counts at WDW. Disney people move around all the time so I doubt tit is this dude anymore. DisneyWithDiabetes started as a blog before moving to AllEarsNet.com. This bit didn't move. I move information not advocacy (aka whining) to AllEars


This was:

Drop Mark a Letter (2006)

Connor just got out of Children's on Halloween '03 just a few weeks before a BIG Disney trip. (a Big Birthday for Zurgswife a.k.a. ZW.)

On that trip we went through some diabetes newbie experiences. Assuming we could buy a soda when we need to cover a low, instead of carrying a juice box. Loosing a meter etc.

We also found out that Disney Cast Members (employees anyplace else but Mickey calls them CMs) at the rank and file level are spectacular with diabetes assistance if you say "I need help."

Unfortunately we found out they are kind of a pain about carb counts. All you T1 families know the look that asks, "Why are you asking about carb counts? You an Atkins freak?"

Disney is GREAT at many thinks. Carb counting ain't one of them.

Since then I have been trying to get through to a 'suit' to talk about it. I am persistent and motivated. I kept at it off and on for two years.

No luck.

I had phone calls unreturned. I got high and mighty letters patronizing me about the important of them not getting it wrong and my responsibility to get it right for my kids. Oh and the ever popular (raise you hand if you have heard this one T1 families) info on a few sugar free items

50 odd thousand employees. Ya think someone would have a T1 clue.

Well after two years I finally talked to honest to Mickey disability executive.

He said he had never heard a guest asking about carb counts for a T1 kid.

No kidding! Wonder why? Unreturned phone calls and sugar free maybe

Turns out he was a very nice, if well insulated guy. He just needs to hear from more T1 families

So if anyone stumbles onto my little blog and would like to drop the guy a note here's where to send it:

Mr. Mark Jones
Walt Disney World Services for Guests with Disabilities
Box 10000
Lake Buena Vista, FL 32830

Dear Mickey

This is an old Post from Disney With Diabetes before it moved to All Ears.

April 2006

Dear Mickey;

An Open Letter to Disney World

You do a great job with many disabilities. Maybe you can make the same effort for families with type 1 diabetes.

The thing we need most is counts of carbohydrates in the foods you sell so we can give our kids the amount of insulin they need. We are not crazy Atkins dieters gone wild. It is a Life Safety Issue Mickey.

I spoke with cast member Mark Jones of Walt Disney World Services for Guests with Disabilities. Mark said that he has not heard from guest that diabetes and carb counts is a concern.

Given my experience trying to surface the issue it is no surprise. It took me two years asking who is responsible for disability issues to get through to him. I expect that most folks give up in that time frame.

Here is a quick sample of comments from March 16, '06 on the American Diabetes Association parents forum:

One parent asked:
1) Has anyone visited WDW with their Type 1 child? Any tips? We are *considering* a visit this summer. But yikes, how to do with a 6 yr old with diabetes?
2) Related to question 1. How do you figure out how many carbs are in restaurant meals that you can't find listed in any of the carb guide books?

Another wrote back:
I went to Disney on February this year, 6 months after T1 diagnosis. I was extremely scared dealing with diabetes. Anyway, Disney was very stressful for me but My son loved it.

A third added:
We went to Disney over New Years. Our son is on the pump. Disney is great and very accommodating, but my biggest, really my only, complaint is that they have no carb counts for their food. You can bring in food of course, but at some point you will probably be buying Disney food.

So, on this one day, the idea of going to Disney with a type 1 child brought out the feelings of, “Yikes, Scared, Stressful, no carb counts.”

Some quick facts over 20 million children and adults have diabetes. Of that somewhere between 1 and 2 million are type 1.

One to Two million people who’s family thinks “Yikes, Scared, Stressful, no carb counts” when they consider vacationing at Disney World.

These kids typically do three to five thousand finger sticks, injections and/or infusions a year. That hurts a kid.

Just give us carb counts. It is the right thing to do and you will make more Mickey. Notice the one parent saying they carry in food so they know the carb count? You are loosing food sales Mickey my pal.

What do you say Mickey how about taking some stress, yikes and scared off these families and help make these families Disney Vacation Magic?

Great little photo essay - Breakfast with Lilly.

Check it out. Very well done. Love B&W and the cereal face.

http://www.phauntactions.com/blog/?p=418

Who Care(s)mark IV

We got the form letter from Caremark. They have a bad case of Uglycemia.

The letter says they don’t care what the FDA label says about storage and temperature, they are shipping insulin without cool packs. Well that is a loose translation. A translation in the spirit of uglycemia is more like: "FU. We're saving a few cents."

How hot do you think a delivery truck gets in direct sun on a few 78 degree days?

Here's copy:




In the mean time feel free to catch up on YDMV's experience with Caremark, weather and insulin shipments. Oh and these had cool packs but were on a slow truck from New Jersey. The three part Mini Series is here:

Caremark Saves You Money
Third Time Hold the Charm
46 Degrees of Separation

So here is what has got me ticked off, well other than We-Don’t-Care-Mark’s actual existence, Lilly the wonderful makers of Humalog lobby their opposition to “middlemen whose interest are making money – not patients” ie no cheaper Canadian imports. They Lilly are the ones on file with the storage requirements at the FDA. Anyone think they will stop selling to CVS/Caremark?

So what can we do? Here is what I did, please copy and paste and send it or something like it to Lilly and your Congressional Representative:

*********************

John C. Lechleiter, Ph.D, Chairman, President and Chief Executive Officer
Timothy J. Garnett, M.D, Vice President Chief Medical Officer
Eli Lilly & Co.
Lilly Corporate Center
Indianapolis, IN 46285

March 25, 2009

Dear Doctors Lechleiter and Garnett,

Thank you for helping me to keep my kids healthy. I am the parent of two Type 1 insulin dependent children. Your insulin keeps them alive. It is an understatement to say we use a lot of Eli Lilly products in our household. We buy Humalog a dozen and a half bottles at a time.

It is in the dozen and a half at a time where my concern lies. I would like your instructions on what to do if the Humalog we are receiving does not meet Lilly’s safety standards. I know what to do when it gets home; it is in the getting here that I have concern about maintaining your standards.

Like many patients in the US we receive our Humalog through Caremark, a domestic US mail order pharmacy. Our insurance requires us to use them and we are required to get 90 day supply at a given time. As you can image it is a big shipment of insulin.

Over the years I have heard major drug companies, including Eli Lilly, stress the importance of the US drug supply chain as a safety issue. You have clearly told consumers, like our family, that you the manufacturers can not assure the proper handling of product from non US sources. Your lobbyists have testified to congress that the US drug supply system must be protected from imports as a safety issue. Specifically Eli Lilly has very clearly stated that they are opposed to middlemen “…whose interests are making money – not helping patients.” Again thank you for your concern for our safety. Clearly you care about safety and by inference you can use market forces in the US to assure safety.

http://www.prnewswire.com/cgi-bin/micro_stories.pl?ACCT=916306&TICK=LLY&STORY=/www/story/10-18-2004/0002285118&EDATE=Oct+18,+2004

I’ll take your word for that. I must however ask you to stand behind your word. Specifically that you stand behind the safety of insulin shipped by firms like Caremark. With your public concern for the safety of the supply chain I would like to know if it is safe to presume that you are aware that Caremark insist that insulin does not need to be shipped in cooled packages. They are telling families of type 1 children that insulin does not need to be refrigerated in shipping, only for long term storage. See the attached form letter from CVS Caremark.

This seems to me to fall outside the labeling of the insulin and you filings with the FDA. Your Humalog packaging slip in PDF form on your web site states;

“How should I store Humalog?
• Store all unopened (unused) Humalog in the original carton in a refrigerator at 36°F to 46°F (2°C to 8°C). Do not freeze.
• Do not use Humalog that has been frozen.
• Do not use after the expiration date printed on the carton and label.
• Protect Humalog from extreme heat, cold or light.”

You make a very similar statement to the FDA on the web at
http://www.fda.gov/cder/foi/label/2007/020563s065,021017s030,021018s041lbl.pdf

Storage — Unopened Humalog should be stored in a refrigerator [2° to 8°C (36° to 46°F)], but not in the freezer. Do not use Humalog if it has been frozen. Unrefrigerated [below 30°C (86°F)] vials, cartridges, and Pens must be used within 28 days or be discarded, even if they still contain Humalog. Protect from direct heat and light.

I have always understood this storage to include shipping. Shipping can take a few days and trucks get hot. Further our experience is that Caremark’s delivery firm leaves the insulin on the front step in the sun in 90 degree weather.

Lilly takes a clear stand on free markets. (http://www.lilly.com/about/public_affairs/positions/) You are for them.

So am I. The way our free market works is you freely sell to Caremark as a trusted US supplier of Humalog to US patients, like my kids. I trust that you support the supply chain safety system and practices you have specifically lobby for. Our Humalog is safe.

To be clear: This means you support the practice of shipping insulin without cooled containers by your US partner in the delivery chain because you continue to sell them product. You stand behind your product and remain responsible for its safety through the free market. You specifically use only middlemen whose interests include patient safety as well as profit.

In the absence of clear written notice to the contrary, I can trust that Lilly stands fully behind the safety of insulin shipped without any temperature controls. In this case you agree specifically that a few days shipping and storage are not the same thing.

If that is not the case, I trust you will take the free market steps necessary to assure the safety of the supply system, since you have strongly advocated for said system. Further if needed you will provide notice users with clear guidelines about shipping safety.

I know that you have gone to great length and expense to communicate what you are for to our elected officials. I am sure you will be happy to be as clear with them on this issue. I will forward a copy of this letter to my elected officials so they can be prepared to hear how you are using market forces to insure that the products you provide in the market meet the labeling you have cleared with the FDA. I will encourage my fellow type 1 parents to reach out to their elected officials as well.

Barring a clear reply to the contrary, I and these other parents of Type 1 insulin dependent children can rely on Lilly to use free markets to protect the safety of our insulin. It is after all a responsibility that you have specifically asked for.

Thanks again for helping keep the kids alive.

Very Truly Yours,

*********************

Representative Allyson Schwartz (PA–13)
423 Cannon Office Building
Washington, D.C. 20515

March 25, 2009

Dear Congresswoman Schwartz

Thank you for your service to our nation. We had the pleasure of meeting in your Jenkintown Office with a group supporting the Juvenile Diabetes Research Foundation a year or two ago.

I was impressed by your to attention and understanding of type 1 diabetes as well as your commitment to fiscal responsibility with pay as you go.

As the nation deals with economic stress and starts a process of examining our health care system I hope you can find a few minutes to ask the pharmaceutical industry to stand up for what they have been asking of you and your fellow representatives for years. Specifically to keep our domestic drug supply safe from those who would take risk to maximize profits.

You will find attached a letter to Eli Lilly executives on the safety of insulin shipped via by US based mail order pharmacies. Lilly has lobbied congress to keep the domestic drug supply free from non US “middlemen whose interests are making money – not helping patients.”

Lilly has filed specific temperature requirements for storage of their Humalog band of insulin with the FDA. Lilly’s distribution partner CVS Caremark has announced that they will not follow those guidelines when shipping insulin.

I believe that we as consumers and you as our representative have the right to expect that Lilly and Caremark will follow the requirements agreed to with the FDA and the market conditions they have lobbied for.

Sadly my experience with large companies is that they try to ignore or double talk their way out when dealing with consumers. This was certainly Caremark’s approach last summer when they shipped and subsequently took back $4,000 of insulin that was not kept cool in 90 degree weather.

I hope that you have the time to have a letter sent to Lilly and Caremark and ask them to standby the drug labeling and the market freedoms they have lobbied for. I suspect that they maybe more responsible to a member of Congress than a consumer. Sad.

Very Truly Yours,

Uglycemia Re-Defined

I am not being sarcastic, much.

I am considering a new definition of Uglycenia. I know I just coined the term yesterday. So the way I see it, the term is still in flux and I am allowed to play with the definition.

Here’s my new diagnosis, uglycemia is the condition that causes people, who don’t know Jack about diabetes, to weigh in on Type 1 care. Uglycemia is caused by either resistance to, or a lack of, compassion.

For example, the food police have a fairly common case of uglycemia. Sadly this form of uglycemia is highly contagious and is often spread by those in the news media who have a case themselves.

This fairly benign form of uglycimia is best defined by the mind’s resistance to compassion. As a result BS (and we are not talking about blood sugar here) builds up in the brain of the individual with uglycemia and causes lapses in cognitive capabilities. Complications from prolonged periods with elevated BS can be serious and even life threatening.

A rarer but more serious form of uglycemia is when the body completely stops producing compassion, a key hormone that helps the mind use knowledge. Knowledge rapidly builds up in the blood stream as it can not enter brain cells without compassion. Lacking the compassion to use knowledge the brain burns fathead cells for energy. A byproduct of burning fathead cells is BS. This BS rapidly becomes toxic causing the condition know as Dumb-arse Kook Atosis or DKA. If untreated with an injection of compassion DKA is rapidly fatal. (If not from internal damage it is often fatal from getting punched in the mouth that excessive BS leaks out of.)

An example of this more serious form of uglycemia are school officials who resort to inventing self serving 'rules' that fly in the face of the best practices outlines in Helping Students with Diabetes Succeed.

So there you have it: uglycemia is the condition marked by the build up of BS in the mind. As we have discussed there are two types: the more common resistance to compassion and more serious total lack of it.

Stem Cells - It is all in the Motivation

I read this and I thought that if someone was interested in motivating congressional action on stems cells all they would have to do is show at the Capital up with a needle and say, "Dudes line up and contribute cells or vote another source."


Of course, I have heard some say your average congressman doesn't have the items necessary to contribute to the cause.

ROFLOL

Human Adult Testes Cells Can Become Embryonic-like