2016 Medtronic Diabetes Advocate Forum: Transforming Diabetes Care Together

Posted on April 19, 2016 by Laddie

Last week I had the opportunity to attend the 2016 Medtronic Diabetes Advocate Forum in Northridge, CA. This was the first time I have been invited to such an event and I found it to be a great experience. The advocacy power in the room was palpable with representatives from 5 Latin America countries, 2 from Canada, and 14 from all over the US. I was proud to be the one with gray hair in the group photos. My social media skills were not quite as adept as those of the younger attendees, but I represent a growing population: seniors living with diabetes. I felt welcomed and respected by all.

In the last two years Medtronic Diabetes (MDT) has been reorganized to move from a product-based pump and sensor company to a patient-centric model. The MDT executives with whom we met described the future role of MDT as a “holistic diabetes management company.” They were consistent and comfortable using phrases such as:

Inspired by people

Global human insights

Behind numbers are the patient

No two journeys are the same

Together we can make change

The Medtronic Vision was shared often and highlighted on walls throughout MDT headquarters:

TRANSFORMING

DIABETES CARE TOGETHER,

FOR GREATER FREEDOM

AND BETTER HEALTH

This idealistic philosophy envisions a table where all of the players meet with the patient as the focus. Doctors, pharma/tech companies, government, payers, and patients work together to achieve better clinical outcomes and high levels of satisfaction for patients. This is easy to draw on a white board, but unfortunately not the reality for most people affected by diabetes.

What is the role of Diabetes Advocates in this vision? I like to think that we are working to bridge the gap between how things are and how things should be. We are fighting to identify and throw the “Lack of” monsters under the bridge: lack of availability, lack of access, lack of coverage, lack of education, and lack of respect.

Bridge to Good Health 2

There is a huge gap in diabetes care between the “haves” and the “have-nots.” This disparity is significant in the United States and becomes even more staggering in a global view. In the conference room of advocates we had the mother of a child who was part of an artificial pancreas trial. In contrast we had representatives from countries with little or no access to diabetes education and advanced technology. Missing from the room were people from all over the world with marginal access to insulin and diabetes supplies.

The future success of a company like Medtronic is tied to providing products and services that deliver value-based quality healthcare. Positive clinical outcomes and patient satisfaction are worthy goals. Those are big words to describe what we all want: a happy and successful life with and despite of diabetes.

We advocates have a symbiotic relationship with companies like Medtronic. They need us as the faces and voices of people with diabetes. We need them for products, services, and the ability to open doors to decision-makers. I believe that their success results in better health for those of us with diabetes. Similarly, better outcomes for me should ultimately result in a healthier bottom line for them. Sitting at the table together gives both of us a better chance for success.

Transforming diabetes care together, for greater freedom and better health.

Disclosure: Medtronic Diabetes paid for my travel and hotel expenses to attend the forum. As always, my thoughts and opinions are my own.

Cracked Again

Posted on October 5, 2015 by Laddie

I just received a replacement Animas Vibe pump. At my last battery change, I discovered a crack in my pump from the top of the battery compartment down about 5/8 inch. Did I over-tighten the battery cap? I have no idea. Is it a design flaw or weakness in the type of plastic used for the pump case? Maybe. I would label it as an isolated problem but less than a year ago, I had my Animas Ping replaced for the same problem.

Animas Vibe Pumps2

In the seven years that I used Medtronic pumps, I cracked at least 3 pumps (maybe 4?). All of the cracks were in the exact same location: from the reservoir view window to the Esc button. Medtronic Pump Cracks

Maybe I am a kid who is rough with my pumps and break them whenever I wrestle and beat up my older sister. Nope. Maybe I get frustrated with diabetes and throw my pumps against cement walls whenever my BG tops 300. Nope. Maybe I have unlimited money and don’t take care of my diabetes devices. Nope.

So what is the truth? I am a middle-aged woman who will soon be called “old.” I line up my diabetes supplies in LIFO (last in, first out) order and never once in 39 years have I ever run out of supplies. I am not perfect at the diabetes game but I do a pretty good job. If nothing else, I am definitely mega-organized, methodical, and careful.

So what is the story?

After cracking the 3rd (or was it the 4th?) Medtronic pump, I spoke with a phone representative who told me that they would not replace any more pumps for me. Huh??? I called back a few days later and got a rep who asked how I was carrying my pump. I was using the Medtronic clip attached to my waistband as I had been ever since I started pumping. She suggested that after they replaced this pump that I should quit using the clip. She arranged for a free leather case (brown and ultra-masculine) which I hated. But from that day forward, I abandoned the Medtronic clip and began carrying the pump in my pocket. Never again did I crack a Medtronic pump. For whatever reason, the Medtronic clip on my waistband caused pumps to crack. For me. Obviously not for everyone. Medtronic pumps still ship with the same clip that for whatever reason didn’t work for me.

When I first started using the Animas Ping I got a few “No Delivery” (Loss of Prime???) error messages. It turned out that when I inserted the reservoir, I wasn’t pushing it in far enough or tightening the reservoir cap tight enough. With Medtronic I was always advised not to tighten things too tight. Whatever. I quickly learned to push Animas reservoirs in as far as I could and tighten the cap tightly. I have never had a reservoir error since then. So now I am cracking the pumps when I insert batteries. Am I over tightening them? I have no idea. But from now on, I will follow the Animas manual exactly as the photo below shows. Battery Insructions

So here I am. A middle-aged woman who has cracked 5 pumps in ten years of pumping. What happens with kids and teenagers who are rough with pumps? What happens with athletes who play football, hockey, and soccer? What happens with people whose pumps are randomly snatched by ceiling fans (Scott Johnson)? Although I hate to jinx myself, I have never had a pump failure. Just cracked cases. Except for the one rogue Medtronic rep, the pump companies have been fabulous in sending me new pumps as soon as possible.

So what’s the story? Is my experience mirrored by others on insulin pumps or am I just one rough, tough lady?

Beats me. As far as I am concerned, It’s just another day in a life with diabetes.

Baby Steps

Posted on January 23, 2014 by Sue from Pennsylvania

For months I have been blogging about the roadblocks my husband has faced in getting a CGMS. He used one before going on Medicare, but a replacement system prescribed by his endocrinologist was denied by Medicare. We went through Levels 1, 2, and 3 of the Appeals process and had a hearing with an Administrative Law Judge on June 26, 2013. After being promised a decision in three months, we are at seven months and still waiting for the judgement to be drafted so that we can find out if we got a “Fully Favorable Decision” or not.

In the meantime, I have been in contact with a Legislative Assistant of Representative Carol Shea-Porter [D-NH1]. In December 2013 Shea-Porter introduced a bill into Congress (H.R. 3710) which provides for coverage of Continuous Glucose Monitoring Systems by Medicare if recommended by a doctor. Unfortunately this bill is being given little chance of passing, but I believe it is an important step in bringing attention to the important issue of CGMS coverage for senior citizens.

I have also been in touch with the Global Marketing Director of Dexcom and she has indicated that together with Medtronic, they are forming a coalition to plan a big legislative push with respect to CGMS and Medicare.

I have been cautioned that it is too early to become excited about a speedy change in Medicare policy. But for me this is exciting news. I have gone from feeling totally alone in my crusade to knowing that a Congresswoman, Dexcom, and Medtronic are taking steps to influence Medicare to change the guideline. For the many diabetics on Medicare who need a CGMS and can’t afford the cost of the device and sensors (my husband being one of them), there is a glimmer of hope that victory will be achieved now that some of the big-time players are becoming involved in the fight.

The steps being taken now are just baby steps and it is still a long way to the top of the mountain. There will come a time when I, together with many others, will need to have our voices heard. We will need a groundswell of support from the Diabetes Online Community to help change Medicare policy to provide for CGMS when medically necessary for senior citizens with diabetes.

Right now we are in the early stages of figuring out how to do this in the most effective way. I urge you to keep reading Test Guess and Go as we update our progress. Please contact me if you have any information or contacts who will be helpful in pursuing this goal. If you are on Medicare (or will soon be on Medicare) and are concerned about your safety in living with diabetes without a CGMS, please reach out to me to add your name to my growing list of advocates.

Baby steps. So small, but the first steps on the road to victory.

The Ultimate Pump!

Posted on November 21, 2013 by Laddie

I’ve been working on this post for a few months, but other topics kept pushing themselves to the front of the line. On 11/7/13 @MHoskins2179, @txtngmypancreas, and @AMNimlos used Twitter to brainstorm the idea of having custom-made pumps. Argh! My idea was going mainstream! I immediately called my lawyer, filed my patents, and got back to work. A few weeks later I have gotten no indication that the interlopers have backed down and I guess we’re at an impasse. Consider Microsoft vs. Apple, Dell vs. Gateway, Best Buy vs. Circuit City, Target vs. WalMart and if you’re still interested, I have a bridge in Brooklyn I’d like to sell you.

I’ve decided to buy a custom-made pump. No pump on the market has all of the features I want and many of them have features that I definitely don’t want. So I’ve decided to do what we used to do for many of our family’s computers. I’m going to find a small, reliable company to assemble a pump with the hardware and software from various pump companies as specified by me. Working with the Comparison of Current Insulin Pumps at Diabetes Net, I’ll select components line by line. I’ll also include some features that are not available on current pumps, but should be. When I’m finished, I’ll look forward to having my ideal pump.

Size and Shape: Because I don’t mind tubing and prefer small infusion sets in contrast to the size of even the newest Omnipod, Insulet will end up having no presence on my custom pump. Although I like the idea of the smaller and lighter Asante Snap, I plan on having an integrated CGMS and will need a larger screen. So I choose the Tandem t:slim for its sleek modern look and the largest useable screen.

Reservoir Options: I have used both Medtronic and Animus pumps and have no preference for one reservoir system over the other. But since I am designing my dream pump, I will go with the pre-filled Asante reservoirs which in my ideal world will be available in multiple sizes with all insulin types and non-proprietary connection types. For me it will be a 200ml Novolog pre-filled reservoir. (Of course ideally I would have access to the next generation faster insulins, but let’s be realistic here….)

Touchscreen or Buttons: This is an easy choice. I will go with the Tandem touchscreen where I can enter numbers on a keypad rather than scrolling up-down-up-down and continually missing my target number. My Animas Ping requires even more scrolling than my Medtronic pumps did and has a bad habit of continuing to scroll after I release the button. Almost anything will be an improvement for me over the Ping.

Screen: I enjoy the readability of the black background with bright color screens of my Ping and Dexcom G4 and I will continue with color. The downside of these screens is the difficulty of seeing some of the colors in bright sunlight and Medtronic boring gray does have some merit. I don’t know how color is used on the t:slim, but I do like how the Ping uses white text with colors for highlighting. The white text is much easier to read in sunlight than colors such as red. Whoever chose red for the numbers and graphs depicting lows on the Dexcom did not do their homework. Check out my blog post from 8/29/13.

Basal and Bolus Increments: in most areas, I would be happy with the rates of Animas, Medtronic, or Tandem. I would definitely like the t:slim’s options for temporary basals because I am frustrated by the Ping which only allows 30 minute increments. Even 15 minute increments per the Asante Snap would be fine. I also like the Medtronic option of setting temporary basals as either an exact basal rate or a percentage.

Bolus Calculator Options: There is no pump that has exactly what I want. I want a straightforward and streamlined menu system where I can calculate and administer bolus insulin logically and quickly. According to Wil’s 7/22/13 post at LifeAfterDx, the Asante Snap requires only 6 steps versus the 14 steps of the Tandem t:slim to bolus for a meal. Tandem has fallen for the FDA-endorsed idea that users actually pay attention to the warning and “Are you sure?” screens that pop up on their pumps. If the FDA knew how little most users paid attention to safety screens and warnings, they probably wouldn’t allow any of us to use a pump. I was satisfied with Medtronic menu system and totally hate navigating through the Ping system. So I will check out the Asante menus and either select that or Medtronic.

Power source: For this line item I am definitely in the battery camp and have no interest in a rechargeable pump. I can’t count the times that I have been unable to use my Verio meter because I ignored the charging warning. Same with my battery powered toothbrush. Compared to the price of most of my diabetes supplies, a battery is a cheap power source. I have carried an extra pump battery in my meter case for years and I feel more confident in this back-up plan than the idea of finding a cord and power source to recharge my pump.

Motor and Memory: I don’t know enough about pump motors to have much preference. As far as memory, it looks as though the Tandem keeps the most info. So I’ll go that direction and try to convince myself to download my devices more often.

Software Download: I haven’t seen Tandem’s software, so I’ll be conservative and go with Carelink. The one requirement for my pump software is that it be compatible with all of my devices regardless of brand. And it should work like my Fitbit with all devices automatically downloading with Bluetooth.

Waterproof: I’m not sure that the Animas Ping is really more waterproof than other pumps, but I appreciate the fact that because they guarantee the replacement of my pump if I have water damage. So I’ll stick with Animas.

CGM: Although I know that Medtronic’s Enlite sensor is a huge improvement over the previous Sof-sensor, I am committed to a Dexcom CGM for my pump. But I want Medtronic software to integrate the CGM readings into my pump.. As much as I like Dexcom, I miss the information that is readily available on Medtronic pumps. I like that you can scroll backwards in time and see actual sensor values rather than just graphs. I like predictive alerts and missed those when I switched to Dexcom.

Blood Glucose Meter: In an ideal world, all brands of meters would be compatible with all brand of pumps and have universal connectivity. I find Freestyle to be the most accurate for me and I will stick with that.

Summary: The whole idea of a custom-designed pump is a pipe dream. We will never see online promises of build to order, unleash the power, get the best, the fastest and the ultimate pump. Because I have rarely had a computer work properly for four years, I know that I should appreciate the FDA review of our pumps. At the same time I am frustrated with the sub-optimal and old-fashioned devices that are compromises between safety and good design. But I can’t complain too much. I started my diabetes career thirty-seven years ago peeing on strips and taking insulin once a day. I am a happy camper with my Animas Ping, Dexcom CGM, and Freestyle meter. But a girl can dream, can’t she?

Pin the Tail on the Donkey: Buying a New Pump

Posted on June 17, 2013 by Laddie

This post is my June entry in the DSMA Blog Carnival. If you’d like to participate too, you can get all of the information at http://diabetessocmed.com/2013/june-dsma-blog-carnival-3/ The topic is: How do you select the diabetes devices you use? To others looking into new or replacement devices, what would be your best advice to someone shopping around?

When I select medical devices, I put on a blindfold, turn around 3 times, and pin the tail on the donkey. Oops, wrong game. But that is what it felt like when I bought my last pump in December 2012.

When I began my pump search, I was using an out-of-warranty Medtronic Revel pump and a Dexcom CGM (continuous glucose monitor). I had previously used the Medtronic CGM and found it to be painful and inaccurate. But I loved having a sensor augmented pump and only having to carry one device. So a pump/CGM combo was my #1 criteria for my next pump. Unfortunately there was no device on the market that had the features I desired given that I was unwilling to use the Medtronic CGM.

Medical device companies are prohibited from giving detailed information about pumps in development and they have no control over how long FDA approval will take. So ultimately I had to make my purchase decision based on my best guess of which future pump would have the features I wanted along with a guess of how soon it would get to market. So I put on my blindfold and went to work.

I was very happy with my Medtronic pump and I knew that their improved Enlite sensor system would “soon” be available in the USA. Animas was on track to release a pump that would be combined with the newest Dexcom G4 Platinum CGM. The new kid on the block, the Tandem t:slim, was a touchscreen rechargeable pump that would also eventually link up with Dexcom. I didn’t have any reason to consider the Accu-Chek pump, so I ignored it in my decision. I don’t mind tubes and was not interested in the Omnipod.

Normally I would love to make a chart and compare features pump by pump. But I didn’t have sufficient information to do that with my most important decision points. I had no way to evaluate the Medtronic Enlite sensor system, and I wasn’t willing to leave Dexcom to take a chance on it. I found the Tandem pump intriguing, but they had no upgrade program in place and I wasn’t willing to risk not having an affordable pathway to buy their future sensor integrated pump. I chose Animas because it will be the first pump released with an integrated Dexcom CGM and I am guaranteed a $99 upgrade fee to get that pump.

Am I happy with my Animas Ping pump? Not really. I knew that I would hate the menu system, but I actually underestimated how much I dislike it. But it’s a good pump and it does the job of delivering my insulin safely. Do I regret my decision? No, because I made the decision based on the future which has not arrived yet. I am still waiting for the Animas Vibe to come to market and I think that it will fix the things I don’t like about the Ping. It will definitely give me the pump/Dexcom combo that was and is my #1 requirement.

My advice to others who are shopping for their first pump or a new pump?

Do your homework:

With yourself. Decide which features are most important to you. Do you want tubeless? Do you require a large reservoir? Do you want a Pump/CGM combo? In most cases you won’t get everything on your wish list, so be open to considering several brands of pumps.
With the pump companies. Visit their websites and request their brochures. If a local rep is available, meet with him/her to see the pump and learn more about it. Omnipod even has a non-operational sample pod that allows you to try it out on your body.
With your medical team. If this is your first pump, your medical team may require classes about pumping and carb counting before prescribing a pump. I think it’s valuable to ask for your team’s opinions on pumps, although ultimately you should get what you want not what your doctor likes. Your doctor’s office might also have demo pumps and infusion set samples.
With your insurance company. Many insurance companies will cover all pump brands. But if they don’t, it’s good to know that up front. For example, Medicare will not pay for the Omnipod at this time. Also, it’s a good idea to determine your financial responsibility for the pump purchase and the ongoing supply expense.
With other pumpers and the online community. Message boards and blogs are a wonderful source of information and opinions on pumps. Fortunately most people end up happy with the pump that they choose, but it’s still helpful to learn as much as you can about the pros and cons of each brand.

It has been six months since I purchased my pump. The questions I would have liked answered then are still unanswered. The Animas/Dexcom pump has been submitted to the FDA, so there has been progress. I have some regret that I did not go with the t:slim, but for the most part I think I made the right decision. And if you think about it, it’s only 3-1/2 years until I go shopping for my next pump!