In PA? Call your Senator in Harrisburg.

We need to get legislation out of the education committee and passed to Kids with Diabetes Safe at School. I sent this email to my senator's staff, Eric Pauly. They vote June 19 9:00am. 

Please do too, or call 717 787 6599

EPauly@pasen.gov

Dear Eric, 

Kids should be safe at school. Even kids with diabetes. 

I support safe at school. I have two kids with type 1 diabetes. I intimately know this issue. 

I support SB 871. 

Will Senator Greenleaf? 

As a parent of children with type 1 diabetes, I want to thank the senator for his support of safe at school legislation in previous sessions.  I hear rumors of a flip flop to the nurses union position. I hope not. 

I hope he will continue to support safe at school and vote for 871. It is a bill that allows local school officials and parents to cooperate to provide safe school environments for children with diabetes. 

I know there are many issues in the Commonwealth. I appreciate that your office has show nuanced appreciation for this approach to facilitating parents and schools to work together to keep children safe, in class without a de facto mandate from the capital to micromanage and inflatelocal school board budgets. I appreciate that he has shown leadership on this issue as a sponsor in the past.

It is time to get this bill passed. 

Senator Greenleaf's continued support is an important step in the process. Diabetes requires ongoing vigilance. Diabetes management does not wait for legislative sessions. Unfortunately not all school budgets can expand to provide full time nursing. Local officials and parents should have the flexibility to agree to train a responsible adult to provide the needed diabetes support to help kids stay safe in schools.

Safe includes medically safe. Most of the daily tasks for children with diabetes care now are provided or supervised by parents and other adults who have be trained by diabetes educators. This standard of care can work in schools where there is not full time nursing coverage. SB 871 anticipates that and is supported by the Pennsylvania Medical Society, demonstrating the processes this bill proposes are medically sound.  

There are best practices recommended for diabetes and schools created by the leading health and education professionals. They are in a document called Helping the Student with Diabetes Succeed: A Guide for School Personnel. It was written by the NDEP, a partnership of the National Institutes of Health, the Centers for Disease Control and Prevention, and more than 200 public and private organizations including school administrators, physicians and nurses. 

Not exactly bums. 871 makes the best practices of helping students possible in PA. They are not now. 

The bill is exactly the kind of considered approach needed to support kids with diabetes in schools.

Thank you for your efforts to keep children safe in school.

Let's focus on succeeding.

To help kids succeed in safe schools, I support PA 871. The nurses union is opposed, if the Senator vote with them I expect him to fund the increase in budgets across the state their position will require with the tax revenue non of us want increased. 

Bennet Dunlap

The Type 2 Experience

I love to see people set up. The DOC is disproportionally type 1.  So is our family. Two T1D teens, one more or less T2D dad (me).

I say more or less because the more I do what I need to do, exercise, eat right, etc the less type 2 I am. I know I need help staying motivated, peers to help me make changes habits.

Enter The Type 2 Experience (TT2E) First the name brings to mind the Jimi Hendrix experience. That is a great thing. I currently am blasting Hendrix on iTunes. Hendrix is one of the coolest.

Infusing T2D social media with more cool is a brilliant thing. These are some of the T2D rock stars. They can help shift the perception of our condition.  In the introduction of the site they say of T2Ds, "We need to have a stronger presence in the Diabetes Online Community." Yay!

T2D is more a function of genes than what most comedians would have us believe. Type 2 misconceptions, like others, is an easy target. While TT2E may not change the jokes on late night TV they can be place we can share with T2D friends and they can fine support and understanding.

Rock on TT2E!

mySugr in Apple App Store

mySugr is available for US users from the Apple App Store.

I have not yet had a chance to give it a good hard look but feel free to do you own looking at http://mysugr.com/companion/.

NIH begins recruitment for long-term study of diabetes drug efficacy

From: http://www.nih.gov/news/health/jun2013/niddk-03.htm

NIH begins recruitment for long-term study of diabetes drug efficacy

"The National Institutes of Health is looking for volunteers to take part in a study to compare the long-term benefits and risks of four widely used diabetes drugs in combination with metformin, the most common first-line medication for treating type 2 diabetes. Beginning recruitment in June, the project is called the Glycemia Reduction Approaches in Diabetes: A Comparative Effectiveness (GRADE) Study."

More

Caution: Isolation May be Hazardous to Your Health

There are a lot of things that are bad for our health. Some have waring labels. Cigarettes for example, everyone know they are bad for you. So much so that they come with a waring label. One of those labels says:

Ya know what else, “Greatly Reduces Serious Risks to Your Health?”

Community.
Other people.
Not being isolated. 

I am not making this up. In her May 13, 2013 article in the New Republic Judith Shulevitz writes extensively about isolation including how it can affect people at biological levels.

How much so? Julianne Holt-Lunstad mail, Timothy B. Smith , J. Bradley Layton conclude their paper, Social Relationships and Mortality Risk, saying:

Data... Indicate(s) that individuals with adequate social relationships have a 50% greater likelihood of survival compared to those with poor or insufficient social relationships. The magnitude of this effect is comparable with quitting smoking and it exceeds many well-known risk factors for mortality (e.g., obesity, physical inactivity).

People living with diabetes know that it can set them apart, make them feel alone. The social stigmas associated with it, that it diabetes the fault of those who have it, doesn’t help.

In Twenty-First Century Behavioral Medicine: A Context for Empowering Clinicians and Patients With Diabetes, David Marrero, writes that, "Diabetes is a challenging condition, both to live with and to treat.” He outlines roles for both family and wider communities in supporting self motivated change by individuals to better live with diabetes.

Marrero makes the need of support starkly clear observing that social isolation has effects on mortality, at the individual level, comparable to smoking cigarettes. Not having a social support system can be as bad for our health as smoking.

Marrero only briefly refers to online opportunities for individuals to find peer support. Gilbert et al more clearly define peer support in their paper, Online Communities Are Valued by People With Type 1 Diabetes for Peer Support: How Well Do Health Professionals Understand This? They offer a wide discussion of the value that diabetes patients see in online communities. They also outline some of the concerns that health professionals have of patients using the internet.

Not all people with diabetes have family or a community that understand diabetes. Gilbert suggests peer to peer patient support is an additional avenues of support that can be effective.

Community helps. Don’t let diabetes isolate us.

I am not suggesting that community takes the place of quitting smoking, being active or loosing weight. I am suggesting that it is part of the mix, as important as other health risks and we need to say so.

Our insurance will not pay for social relationships, our doctor can’t prescribe anti isolation medications but we can create community. Community that is good not only for our individual health but the well being of other too.

Community is a win - win.

Maybe we need labels on strips an insulin.

WARNING: Joining Diabetes Communities Now 

Greatly Reduces Serious Risks to Your Health.

Resources:

Judith Shulevitz, The Lethality of Loneliness, New Republic, http://www.newrepublic.com/article/113176/science-loneliness-how-isolation-can-kill-you#

Julianne Holt-Lunstad, Timothy B. Smith, J. Bradley Layton, Social Relationships and Mortality Risk: A Meta-analytic Review http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1000316

David G. Marrero, Jamy Ard, Alan M. Delamater, Virginia Peragallo-Dittko, Elizabeth J. Mayer-Davis, Robin Nwankwo, and Edwin B. Fisher, Twenty-First Century Behavioral Medicine: A Context for Empowering Clinicians and Patients With Diabetes: A consensus report, Diabetes Care February 2013 36:463-470; doi:10.2337/dc12-2305, http://care.diabetesjournals.org/content/36/2/463.extract

Kate Gilbert,  Sarity Dodson, Marie Gill, and Rosemary McKenzie, Online Communities Are Valued by People With Type 1 Diabetes for Peer Support: How Well Do Health Professionals Understand 
This?, Diabetes Spectrum August 2012 25:180-191; doi:10.2337/diaspect.25.3.180 http://spectrum.diabetesjournals.org/content/25/3/180.full

FDA allows A1c test for diagnosing diabetes

This is a Cut and Paste post from the FDA: 
For Immediate Release: May 23, 2013

FDA allows marketing of first A1c test labeled for diagnosing diabetes

Today the U.S. Food and Drug Administration announced that it is allowing marketing of the COBAS INTEGRA 800 Tina-quant HbA1cDx assay (Tina-quant HbA1cDx assay) for the diagnosis of diabetes by health care professionals. This is the first HbA1c test that FDA has allowed to be marketed for this use.

The HbA1c tests, or A1c tests, currently on the market are FDA-cleared for monitoring a patient’s blood glucose (sugar) control, but not for diagnosing diabetes. A1c tests measure the percentage of hemoglobin A1c that is bound to glucose, giving a patient’s average glucose level over a three-month period.

Diabetes is a serious, chronic metabolic condition where the body is unable to convert glucose into the energy needed to carry out daily activities. An estimated 25.8 million people in the United States have diabetes, including seven million people who remain undiagnosed. If left untreated, high blood glucose levels (hyperglycemia) can lead to serious long-term problems such as stroke, heart disease, and damage to the eyes, kidneys, and nerves.

The diagnostic criteria for diabetes have changed over time. Based on the research and recommendations of international diabetes experts, many health care providers have already been using some A1c tests to diagnose diabetes, in addition to the established diagnostic procedures of a fasting blood glucose test and an oral glucose tolerance test to diagnose diabetes. However, before today, A1c tests were not specifically designed or granted permission by FDA to be marketed for diabetes diagnosis, making it difficult to know which A1c tests were accurate enough for this purpose. The Tina-quant HbA1cDx assay, a laboratory-based test, can be used to both accurately diagnose diabetes and monitor blood glucose control.

“Providing health care professionals with another tool to identify undiagnosed cases of diabetes should help them provide patients appropriate guidance on treatment before problems develop,” said Alberto Gutierrez, Ph.D., director of the Office of In Vitro Diagnostics and Radiological Devices at FDA’s Center for Devices and Radiological Health.  “As the Tina-quant HbA1cDx assay was designed for diabetes diagnosis and has been reviewed by the FDA, physicians can have confidence that this test is reasonably safe and effective when used for its intended purposes of monitoring and diagnosing diabetes.”

In support of marketing clearance, investigators analyzed 141 blood samples and found less than six percent difference in the accuracy of test results from the Tina-quant HbA1cDx assay compared to results from the standard reference for hemoglobin analysis.

The Tina-quant HbA1cDX assay is available by prescription for use in clinical laboratories. Over-the-counter HbA1c tests should not be used by patients to diagnose diabetes, and only a qualified health care professional should make a diagnosis of diabetes. Individuals who receive a diabetes diagnosis should discuss with their physician what they need to do to manage their diabetes.

Hemoglobin A1c tests, including the Tina-quant HbA1cDx assay, should not be used to diagnose diabetes during pregnancy and should not be used to monitor diabetes in patients with hemoglobinopathy, hereditary spherocytosis, malignancies, or severe chronic, hepatic and renal disease. This test should not be used to diagnose or monitor diabetes in patients with the hemoglobin variant hemoglobin F.

The Tina-quant HbA1cDx assay is manufactured by Roche, of Basel, Switzerland.  Roche’s North American headquarters are located in Indianapolis, Ind.

diaTribe, Get the Newsletter, Enter to win a free book

If you are not reading diaTribe (diatribe.org), you should. It is a monthly newsletter about diabetes research and products with content from who I consider the smartest team in diabetes team, lead by Kelly Close and Adam Brown.  Sign up here: http://diatribe.org/user/register

diaTribe also has just published a book with the ADA, Targeting a Cure for Type 1 Diabetes: How Long Will We Have to Wait? To celebrate publishing Targeting a Cure, diaTribe is giving away 30 eBook copies! You can enter the giveaway here.

Here is their quick outline of the book:

Targeting a Cure covers the latest research directed toward curing type 1 diabetes, presenting both the challenges and the breakthroughs. Targeting a Cure is written from a patient perspective and is rich in detail on all the most recent developments in the field. With a foreword by Dr. Robert Ratner, Chief Scientific & Medical Officer at the ADA, an introduction by Dr. Aaron Kowalski, VP, Treatment Therapies at JDRF, and a conclusion by Kelly Close, Editor-in-Chief of diaTribe, Targeting a Cure is a thorough resource that reveals where we stand in the search for a cure for type 1 diabetes and where we are headed. 

Accomplishments: Serious and Silly

This week I am joining Karen and many others in D-Blog Week.
Today's topic is, "Accomplishments Big and Small"

Our prompt of Today is: 

We don’t always realize it, but each one of us had come a long way since diabetes first came into our life. It doesn’t matter if it’s been 5 weeks, 5 years or 50 years, you’ve done something outstanding diabetes-wise. So today let’s share the greatest accomplishment you've made in terms of dealing with your (or your loved one’s) diabetes. No accomplishment is too big or too small - think about self-acceptance, something you’ve mastered (pump / exercise / diet / etc.), making a tough care decision (finding a new endo or support group / choosing to use or not use a technology / etc.).

I think one accomplishments in which take pride, and I will leave the evaluation of greatness to others, is this post. I am proud where writing it took me. It is fairly serious and I share another link that is spectacularly silly but related in that I shared with with the same friend I have never met other than in the DOC. 

Bad things happen to good people.

I wrote this for another T1 dad who has had some issues with a church preschool. OK y’all may not recognize me as the author here but what the heck here goes:

Bad things happen to good people. It isn’t God’s will that they happen but part of God’s providence. There is a distinction there that is small but significant.

If bad things only happened to bad people we could easily know who’s evil from there rest. It would be like God showing up in a cloud and tossing about lightening bolts. There would be no question of who was in charge and we would be compelled to believe in that all powerful God.

Now think of God as a parent. Parents want their kids to do OK and to love them back. We all kind of get around to the idea that, the kids have to choose to be OK and love us back for themselves.

God being infinite is infinitely more loving and wise is more aware of this truth than we are. So God is infinitely more motivated to let us, his children, choose to love him by NOT forcing us to do so. In short God keeps us in freedom to choose to love God or reject God because that is how love works. (Every one sing the Sting song, “If you love someone, set them free…” OK enough of that sillieness.)

So what does this have to do with the topic at hand? Lots. First we get what we can handle or more precisely what we can handle with God’s help. We didn’t do anything bad, were not being punished, it is just our at bat, our lot, our thing. It is real hard to keep that in mind particularly, when those piling on the crap are wearing religious garb and projecting that they are all wise and speaking for god. Nope they are just human.

Second, we only get what we can handle, if we couldn’t, if it was going to break us for sure, we wouldn’t get it. That ain’t saying it is an easy load. It is saying we have an even shot. No more, no less, we are in freedom.

Third somehow there is a way to be better for all of it, we have to find the up side of the equation that is keeping us in freedom to come out OK. I am not so sure that I know what that is. If I figure it out I’ll let you know but it is there someplace. Our gig is to find it and do it.

I am coming to feel that there is a community here that may be more than it seems. We are here to help each other with the diabetes thing but the fact is the real issue is how the diabetes thing gets into our heads and hearts. That is more than helping with blousing tips.

It may be that we are here to really reach out and say, “That is wrong. I will stand by you to help you not over react but to act in accordance with what is right.” We can’t change the way Fishville or some church board act and think. We can support each other and in doing so help ourselves on a better path.

So let me say that I empathize with every emotion you are feeling, I know them first hand. The real spiritual issue is not to let what we experience as the shallow hollow self interest of others turn us into them.

Stand up for your child, her mom, her grandfather and her brother. You were put on this path because you can come out of it a better stronger man, father, husband and son. I probably can too. It may well be that you sharing your experience is a way to help me see that it is the same for me.

Thanks for the hand.

Stand tall stand and proud stand up for the children you are God’s chosen advocate for. Do so in away that makes us, them and God proud of you. You have done so so far. I have faith you can continue to do so.

In the long run - it is how we react that counts


This was originally posted as:
http://www.ydmv.net/2007/10/bad-things-happen-to-good-people.html

And now for something completely different

That was a little deeper and really out of character for me. So here is another bit I did for the same guy far more in the public character of us both. I am just about as proud of this which should be proof that I am, at best, an adolescent at heart. Here is an excerpt, the full long link follows:

BadShoe: And you don't know the peoples’ names?
Brensdad: Well I should.
BadShoe: Well then who's on NPH?
Brensdad: Yes.
BadShoe: I mean the kid’s name.
Brensdad: Who.
BadShoe: The guy on NPH.
Brensdad: Who.
BadShoe: The NPH kid
Brensdad: Who.
BadShoe: The guy using...
Brensdad: Who is on NPH!
BadShoe: I'm asking YOU who's on NPH.
Brensdad: That's the kid’s name.
BadShoe: That's who's name?
Brensdad: Yes.
BadShoe: Well go ahead and tell me...

It go on and on at: http://www.ydmv.net/2008/07/not-that-abbott.html

Of Independence and Angry Mobs (A YDMV Classic aka rerun)

This week I am joining Karen and many others in D-Blog Week.

Today's topic is, "Share and Don’t Share"

Our prompt of Today is: 

Today we’re going to share our most memorable diabetes day. You can take this anywhere.... your or your loved one's diagnosis, a bad low, a bad high, a big success, any day that you’d like to share.

I wrote this in July 27, 2007, still true and and a lot of software, devices and industry attitude  I still am looking for.

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. (Editors note: OK my past 9+ years with a CWD) 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. (2007) 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 the day before.

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.

Hang Together, Not a Check Box

This week I am joining Karen and many others in D-Blog Week.

Today's topic is, "We the Undersigned." 

Our prompt of Today is: 

Recently various petitions have been circulating the Diabetes Online Community, so today let’s pretend to write our own. Tell us who you would write the petition to – a person, an organization, even an object (animate or inanimate) - get creative!! What are you trying to change and what have you experienced that makes you want this change?

Hang Together.

Petitions need to be a call to action not a check box. 

Consider the most prominent of all American petitions the Declaration of Independence. The people who signed that were committed to action. It was an act of treason against mother England. We all know Ben Franklin’s, “We must all hang together, or assuredly we shall all hang separately.” Think about that, this wasn't a casual thing, clearly it was outside the signors comfort zone. 

Signing meant the risking being hanging by the British if captured. That is not an understatement . The signors had more than a little skin in the game. These days signing a petition often is little more than a Facebook like. I am not sure there is any lower common denominator of approval than that a Facebook like and that many petitions are at best only tiny bit more than that. 

I think we need skin in the game. A willingness to give some kind of effort towards the change that petitions seek. To do so means we have given a little more than a quick glance at the matter and are willing to actually be involved in what ever revolution we are signing up for. 

So I am all for a petition that is not so much signed as a movement that is joined. Here is a cause to think about joining: Look at the amounts invested in research per patient for AIDS, Breast Cancer and Diabetes. This chart is from my friend Manny who got the numbers here. 

Sure it is fun to click away to petition for funding a Death Star. If we are going to petition let it be more than a silly click and be about something meaningful. Research is something for which the diabetes community should “petition the government for a redress of grievance.”  If that last bit sound familiar, it come from Franklin’s day. Written by people that know what a petition was, it is the last line of the First Amendment to the Constitution. 

Let do something not just click something.