Last Minute Shopper Alert: Stuff the Vegas UnCon into Their Stocking.

Looking for one more brilliant gift?

Your Diabetes May Vary but the gift may not. What's better thanVegas UnConference?

Don't know about the UnConference? Learn here, it is perfect for People with Diabetes (PWDs) and the People who Love Us (PLUs). Find your people. Have fun in the process.

Winter is coming. With it the winter doldrums and the need for a Valentine's Day celebration. Give the Unconference now as a stocking and join the fun in Vegas.

Book the UnConferece here. Then with Amazon Prime you can have these socks to hang from the bed post in time for a visit from Naughty Santa's Helper.

Wink Wink, Nudge Nudge.

I had prostate cancer. It’s been a blessing.

I've been out of circulation.

Turns out I’m fortunate; I had prostate cancer. It’s been a blessing.

Fortunate first because, I’m using the past tense - HAD. OK, it is still early, but all the information so far points to success. Score. I’m saying had.

From the first concerns to the diagnosis, and surgery, I had a lot of fun riding hundreds of miles on my bike. They had me in better condition than I have been in for a decade or more. Being in better shape helped. Rides were my meditation and were the space where I could get emotionally ready for the surgery.

I’m lucky it was detected while it was localized. What matters is I had, and still have a stunning level of support from family, friends and health care team.

I wince when people say they are sorry for what I have been through. While I greatly appreciate that sentiment, sorry isn't the lens I see my experience through.
I’m not at all sorry for it.

I am thrilled that, if cancer was in my life’s path, it was slow growing, highly treatable type.

I greatly appreciate that my family doctor of 30+ years connected me with a second opinion. That second opinion proved to be the star of my team. I benefited from the personal relationship between these two professionals. It is such that a phone call from my primary was all it took to get me a personal phone call and appointment from a surgeon whose staff said his calendar was booked for months. That took less than a day.

I could not work with better people. Family first isn't what they say; it is how they live. It was never about picking up the slack; it was always about being proactively supportive.

My family is wonderful. They showed that even when I didn’t. They supported my both contradictory fierce independence charting a path through the process and rants at the myriad of SNAFUs that come from the spectacularly non-systematic health process, incorrectly called the healthcare system. I am sure my vacillating between being noncommutative or a ranting loon was not fun.

I’m not sorry. I’m blessed.

I much more clearly see the many blessings who are the people in my life.

Love Ya Mean It

Glycemic Index' May Be Too Unreliable to Manage Diabetes: 
Wide variability seen after eating same food at different times

The opening: Glycemic index values of the same foods can vary widely and may be an unreliable indicator of blood sugar response, according to a new study.

No kidding?!

YDMV

From Scott's Diabetes

Sugar Surfing comes to Minneapolis

Dr. Stephen Ponder is a pediatric endocrinologist and certified diabetes educator with Scott and White Healthcare in Temple, Tx. He’s lived with type 1 diabetes since March of 1966 and has been a pioneering force in diabetes telehealth and remote care for many years.

One of his latest projects is Sugar Surfing, a modern approach to managing diabetes.

“You can’t stop the waves, but you can learn to surf.”

It’s happening on September 24th, 2016, 12:30 pm (workshop runs from 1:00 pm to 4:00 pm, at Open Book.

If you’re nearby and interested, please register and share! Space is limited, so don’t delay!

Register Now!

More at Scott's

https://scottsdiabetes.com/2016/06/26/sugar-surfing-minneapolis/

Wanted: Teen Athletes with Diabetes (Girls and Boys) Team Novo Nordisk Camps

From their release:

Team Novo Nordisk Seeks Young Athletes with Type 1 Diabetes

Tuesday, June 14, 2016 — ATLANTA, Ga. – Team Novo Nordisk, a global team of athletes with diabetes, spearheaded by the world’s first all-diabetes professional cycling team, kicks off the first of two talent identification camps today in Athens, Ga. The talent identification camps serve as a key recruiting tool for Team Novo Nordisk to develop athletes for the men’s professional squad and help fulfill the team’s ultimate goal of racing in the Tour de France by 2021. Currently, 48 young athletes with type 1 diabetes from 18 different countries are slated to attend. Applications are open for a limited amount of remaining spots at the second camp, which begins July 12, at www.teamnovonordisk.com.

More: https://team-novo-nordisk-us.prezly.com/team-novo-nordisk-seeks-young-athletes-with-type-1-diabetes

The Best Insulin Pump - The One You Use

I wrote about the best Insulin Pump a few years back. My view hasn't changed much, so, Summer Rerun. 

So here what I said in 2012

The question which is the 'best' insulin pump floats up in diabetes conversation regularly. Best is a natural but probably the wrong question.

The quality of pumps and their ability to perform the basic insulin delivery functions is so good that these days users and their care teams have the potential to define the device and vendor that most appropriately fits a person's unique lifestyle. That is a real wordy way of saying, ‘there is no best pump.’

Happily one size does not fit all.

People with diabetes have different needs because their diabetes varies. So don't look for the absolute best pump but to the device that best accommodates your individual lifestyle. This dude may love his backpack,  but it may not be your best choice. (And what is in the giant bottle on the bottom of that thing anyway?)

Design and feature matter. For example the patch, folks seem to have a love/hate relationship with the OmniPod. That is great. If you are drawn to the patch pump, no tubing, PDA driven approach -great. If like my kids. You think it is too big and uncomfortable and tube are okay a more traditional pump may be better in your life. There are a lot of criteria individuals can consider. Remotes are really great for little kids. Lock the pump down and have mom or dad operate it with a remote control. How much insulin do you use and how much does it hold. Is it a color a young girl is comfortable wearing 24/7.

CGM may matter. If CGM integration is mission critical only Medtronic has int on the market in the USA. Animas, Roche, OmniPod, and Tandem are in the on-deck circle with Dexcom. Remember that deck circle is a baseball term. There is no clock in baseball and Animas, and Omni pod have been next in the line up for years waiting to come to bat. Some of the fans in the stands are getting rowdy and jeering the Ump wanting to see them come to bat. Food databases are touted as a key feature. If they are to your look carefully at the implementation and ease of building realistic meals. Can you customize the food database to your needs.

Service matters. Check it out by calling the service in the middle of the visit by the sales team. Like everything else service varies. We have had great service from Animas other say they have had issues. Read up on TuDiabetes and CWD and keep in mind that when the device is as integral a part of life as an insulin pump, individual service expectations will be very high.

Sets matter. People talk about pump features, but the set and how it feels going in are where the rubber meets the road. -  Well, the insulin meets the subcutaneous tissue. Try on sets as part of the sales process. Sets plural, not set.

Instead of which is best maybe the question should be what features best adapt to my lifestyle. That the art and science of insulin pumping have progressed from that backpack size prototype, in the black and white pictures above, to diverse, miniature devices is great.

What is best is we get to choose based on our individual preference.


Related posts from the YDMV archives:
Why Pump
What would be Really Cool.

Updated with some grammar & spelling fixed 5/31/16. Sure there are still a ton of errors. My Writing May Vary

You Diabetes May Vary So Access Matters (Wherein I borrow from Manny & Scott)

Diabetes is complex.

It is highly dependent on patient self-care actions that include daily self-monitoring of blood glucose, medication and dosing adjustments, diet measurement, carb management, physical activity, and logistic management of all the stuff needed to do all of the above. Diabetes has a well-documented comorbidity of clinical depression and a subclinical level emotional exhaustion from the burden of management. Diabetes is complex.

Whoever manages it, needs tools they can work with.

My dear friend Manny Hernandez has a spectacular visual representation of the time patients self-manage. A chart that shows the percentage of time people with diabetes self-manage vs the time we spend with our physicians, diabetes educators, and care teams. It is below.

See that little white line? That is time with the care team. BUT to make the little white sliver visible, Manny had to exaggerate its proportion of the graph. This is not to minimize the role of our professional care teams but to make it visible. Manny is not alone in making the point of the importance of patient self-care. Here is Manny’s chart, presented by renown endocrinologist Dr. David Marrero at the ADA Scientific Session in 2015. In the image, we see one diabetes doctor talking with a huge room full of other diabetes doctors making the point that respecting the role of patients is critical to success.

Image source Diabetes Mine - Twitter

Let just pause and think about what this image represents: a doctors and a patient collaborating to advance the art and science of diabetes care at the ADA Scientific Sessions.

I think that patients and doctors collaborating is a brilliant model. 

All the diabetes complexity outlined in the opening paragraph, along with all the associated variability is self-managed the vast majority of the time by patients guided with a small but critical sliver appointments with their health professionals. Somehow in that little white space, doctors and patients figure out jointly how to make the time represented by the blue space successful.

All this is a very long way of starting to making a case for asking, "Who knows best what will drive success in the all the blue time on Manny’s chart?"

To put it briefly, again, I turn to a friend:

"My initial reaction is that healthcare decisions, such as which insulin pump to use, should not be made outside of the doctor/patient relationship," - Scott Johnson

We have seen that disruption to access to testing supplies in an attempt to reduce supply costs, resulted in increased hospitalization, costs, and mortality.

Diabetes is complex. It is highly dependent on patient self-care.

There are 30 million or so people with diabetes in the US. It is a safe bet we have different approaches to succeeding in the blue space on Manny’s chart. Long-term diabetes costs are contained by what happens in that blue space. 

The best practice is individualized diabetes care programs. The appropriate device may vary.

You Diabetes May Vary - So Will Your Care Program and Your Diabetes Stuff. 

Access matters for long-term success. 

SHARE YOU ACCESS STORY

Related (and ancient) YDMV  Content:

The Best Pump

Why Buy into Pumping

#SuspendBidding

First, there was a poster at ADA last June. Then a white paper and now a peer-reviewed article in Diabetes Care, ADA's journal. 

The evidence is clear. Medicare's program to save money on test diabetes strips cost more in hospital care than it saved and increased mortality. 

  

Learn more

ACT NOW

Previously on YDMV:

Getting Off the Harm Merrygoround

Throw the Red Flag. Bidding Strips in No Touchdown

Of Test Strips, Bidding, and Harm

Getting Off the Harm Merrygoround

Here we go again. I have written about harm from bidding before. It just got kicked up a notch. 

Today the Journal Diabetes Care has an article on Medicare Bidding in the online preview of the April edition. What 8 months ago was a poster has been peer-reviewed and published in a premier diabetes medical journal. 

A press release on the paper is titled: Medicare's Competitive Bidding Program Puts Beneficiaries' Lives at Risk. 

The paper builds on the Government Accountability Office (GAO) concerns on the safety monitoring of the Competitive Bidding Program.

Meanwhile, Medicare says the program is great, no harm, no foul, and they don't hear any complaints. Oh yeah, and they are going to put beneficiaries through a new round of disruption starting in July.  

Let's NOT do that. 

HELP I Need Somebody. (In the Next Ten Days)

In HELP, the Beatles protect Ringo from an evil cult. 

Solid plan. 

People with diabetes could use some protecting.

I am not, exactly, suggesting the Senate are an evil cult, but people with diabetes could use the Senate's HELP. 

Can you find two minutes, in the next ten days, to ask the Senate HELP Committee (Health, Education, Labor, and Pensions) to consider diabetes?

Maybe even ACT NOW.

 

On March 9th, the Committee is going to consider health bills. Ask them to bring S. 586 to the table.

• Click the picture.
• Fill in your name and address.
• DPAC drafts letters for your Senators*. 
• Feel free to ad you diabetes story to the letters.
• Push submit to send. 

*DPAC customizes your letters to your Senators. We know who is on the committee, who has cosponsor S586, and who need to support it. All you need to do is click and ask Senators to work with their colleagues bring S 586 to the table. 

After sending the letter, maybe Tweet too. Find you Congress members here and some ready to fire Tweets. #DiabetesCommission

S. 586 creates a commission that will help better address diabetes, in a fiscally responsible manner. The act is budget neutral, and prior experience suggests this commission can have a significant positive impact on care. A generation ago a National Diabetes Advisory Board created the pivotal Diabetes Control and Complications Trial (DCCT) that has defined modern diabetes care.

A new generation of innovative medications and devices are coming to market that can revolutionize how Americans live well with diabetes. Doing so will require the government to change the status quo of federal bureaus working alone, to a coordinated national response, driven by research experts, physicians, educators and people living with diabetes, to keep those agencies with interfering with the doctor-patient relationship.

(HELP may not ACT NOW.  If not, Later, Rinse, Repeat - the Committee meets in April too.)

Spare A Rose - Opening Days Deal: Help Kids AND Make Me Look Silly.

The fourth annual Spare a Rose campaign starts today. 

Spare a Rose helps fund IDF's Life for a Child program bringing insulin and support to children in developing nations who may otherwise go without. Spare a Rose is easy, give one less rose this valentine's day and donate the value of that rose to IDF or give a dozen.  

Spare A Rose is a fun way we, people with diabetes, can join philanthropists, industry and other who support these kids. 

Type 1 requires ongoing insulin. Through Spare a Rose you make an ongoing monthly gift to IDF. With the Monthly Donation section of the Spare A Rose giving form your can set ongoing giving. The funds flow straight from you, through PayPal, to IDF and kids in need.

Spare A Rose is a community effort.  It is fun to be a part of something so useful, needed and simple. Now add to that the opportunity of publicly embarrassing your truly. 

I would love to see Spare A Rose start quickly with ongoing donations. So I'll wear these Disney World map tights to the Friends for Life banquet this summer if we can raise three dozen ongoing gifts in the first three days of Spare A Rose.

Help kids and make me look silly in public at the same time. What could be better? 

#SpareARose

Recall on Clinical Glucose Test Strips - Do Consumers Get The Same Attention?

FDA announced a recall of glucose test strip used in clinical settings. The recall in part says,"..because they may report falsely low blood glucose levels. Because the test strips are reporting falsely low blood glucose when the true levels are above 265 mg/dL, there is a risk that the health care provider would not diagnose hyperglycemia (high blood sugar) including Diabetic Ketoacidosis and Hyperosmolar Hyperglycemic Syndrome in a timely manner and fail to treat elevated blood glucose levels."

http://www.fda.gov/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/ucm483792.htm

So if you own a clinical machine, you should take precautions and check you test strip lots.

What we don't know is are the machines and strips used by millions every day working as approved. Who know? How would we know? Ther is no proactive, ongoing post-market process that acquires test strips the way PWD do; you know from retail channels and test them.

The vast majority of comments to FDA on the proposed glucose meter guidance in 2014 called for robust post-market processes. Procedures have been written but when will they be used?

People living work a day lives run the same risk of falsely low or high glucose levels that clinical machines present. More so if the number of blood checks done on retail machines vs. clinical ones is factored in.

Shouldn we be safe with home use devices?