June 20, 2013

Social Media and The Monster Under the Bed

Join me (and a bunch of other people far more interesting than me) for a special session at the upcoming Children with Diabetes’ Friends for Life conference in Orlando on social media and diabetes support. If you are planning to attend FFL this year, I'd love for you to join us for an exchange between clinical/academic experts and the diabetes online community. If you can't make it to FFL you can join a streaming of the event. DOC members (including your truly) will talk with a panel of clinical/academic experts assembled to specifically to discuss the value of peer-to-peer support and the online community.

Sign up Now!

Participating live or online can help demonstrate the value we in the DOC place on peer to peer social media. If you plan to attend in person, please RSVP by June 28 to P4DC@toniclc.com. (I hope it fills up fast, maybe and early RSVP is better than later.) If you want to join the live stream please fill out this registration

We’ll also field questions on Twitter via the #P4DC hash tag on the day of the session.

Here are some more details. 




Partnering for Diabetes Change (P4DC) is a coalition of people living with diabetes and industry representatives aimed at addressing unmet needs in diabetes through community and collaboration. I am honored volunteer my time to help organize P4DC efforts, including this event. I am thrilled that the people at Johnson and Johnson support the community and make things like this possible. P4DC seeks to validate the role of peer support in diabetes management, address the stigma of type diabetes, and ultimately support underserved communities.

You can be a part of the P4DC effort by participating in this live event, and by offering questions either in person or via Twitter. It is P4DC’s hope that through this session, they will be able to make a first step in showcasing the value of the DOC and the importance of social media engagement for patients.


June 18, 2013

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

June 17, 2013

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!

June 5, 2013

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

June 4, 2013

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

May 24, 2013

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.

May 22, 2013

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.