Medtronic CareLink and Browsers of Yesterday

516892_68656024On the FAQ pages of Carelink. it plainly states:

Which web browsers can be used to access CareLink Personal software?

The system is currently validated to work with Microsoft® Internet Explorer® version 7, 8 and 9, Internet Explorer 10 Desktop, Apple® Safari® 4, 5 and 6, and Mozilla® Firefox® 5.0.1. Other browsers might still work although Medtronic Diabetes is not able to guarantee proper operation of those browsers.

 

I use a Mac. (According to Dexcom, I’m already a complete loser, as their CGM software won’t even run on a Mac unless you use a PC emulator program.) I have two browsers downloaded on my system: Safari (which comes standard on most Macs) and Firefox (which is easily downloaded and what I use occasionally for some banking transactions that demand Firefox).

I know that CareLink works on a Mac, because I’ve uploaded my pump data before on this laptop. So, the other evening, when I needed to upload data so that my trainer and I could look at it together while talking on the phone to adjust settings, I thought it would be easy.

I got this screen when I went to Medtronic’s CareLink link on their website:

Screen Shot of Safari Browser

My Safari was “too up-to-date”, so I couldn’t access CareLink through that browser.

Well, shoot. OK. Fine. I’ll fire up the Firefox browser I have… Version 21. (Not Firefox 5.)

Too up-to-date.

And by the way, if I wanted to download Internet Explorer right now, it’s IE 10 – or 11. And wait, they don’t have a version for Mac.

Frustration

If I didn’t have an amazing husband who is a web developer and happened to be home and was willing to sacrifice a pocket protector to the Geek God, I would have been not been able to upload my data. (He somehow configured something and magically, I have a Firefox browser that is…workable.)

I was able to examine the data that I uploaded, but I can’t imagine how frustrating it must be for others who expect that along with the latest technology they get from Medtronic, they get an upload system that will only work with the browsers of yesterday.

Yes, I expressed my opinion to the support team at Medtronic. I was polite, but I did use the phrase: “Unacceptable.” People who know me smile, as that means I’m pretty angry.

Will they do anything? Time will tell, which is pretty much been my phrase about this experience. What I do know is that it takes just one web developer to fix it and make sure that it works with all systems when there is an upgrade… I’m sure they can spare someone in their IT department.

Like I told you before, Medtronic, while allowing me to trial the system and all that comes with it, does not expect that everything I say will be rainbows and glitter about my experience.

The diabetes community talks incessantly (and I believe, sometimes to the wall) about the crucial need for integrated technology to make our lives easier to manage our diabetes. The Medtronic MiniMed 530G with Enlite is an integrated pump and continuous glucose monitor (and that threshold suspend, which I’ll write about soon… promise), but it’s an utter fail if you can’t use the browser… or two browsers…. or system… that you have to review the data and reports. Fail. (It’s not just Medtronic… Dexcom has failed me, too.) What good is the data if you can’t get to it?

Parting Thought

Heads up, Medtronic IT department. Please update your CareLink application and browser compatibility. (I’m not going to even talk about Chrome, which you supposedly don’t support at all…)

P.S. I’ll write about the actual reports that CareLink provides in another post. They do deserve a post of their own. But jeez.

Come. On.

 

 

 

 

 

By The Numbers…

1214820_70736742A little light reading for your Monday. Grab something strong to drink. (If it’s still morning, may I suggest coffee?)

Nobody Wins, but here’s the numbers…

According to the most recent estimates from the World Health Organization (WHO) and the Joint United Nations Programme on HIV/AIDS, 34 million people around the world had HIV in 2010. About one-half were women, and one-tenth were children younger than age 15.

Diabetes? 371 million. Almost 10 times more than HIV/AIDS. According to the International Diabetes Foundation statistics, this number will explode to 552 million in less than 20 years.

Cause of Death

An estimated 15,529 people with an AIDS diagnosis died in 2010 in the United States. 

An estimated 40, 230 people died from breast cancer in 2010 in the United States. 

Diabetes is the seventh leading cause of death in the United States.

69,071 people died in 2010 from diabetes.

This doesn’t take into account diabetes as a secondary factor for the cause of death. (You have a heart attack caused by heart disease caused by diabetes…. You have a stroke caused by high blood pressure caused by diabetes…Count some of those too and the death toll rises.) AIDS doesn’t even hit the top 15 in the mortality list.

Who Gets The Research Money from the NIH?

Well, here’s another tidbit that I’d like you to chew on for a while…

For every death due to AIDS/HIV, the NIH budgets $329,576 for research.

For every death due to breast cancer, the NIH budgets $17, 308 for research. 

For every death due to diabetes, the NIH budgets $16,010 for research.

(No, I didn’t leave zeros off the last two.)

I got these numbers from the Fair Foundation (hat tip to Scott Strumello, who pointed me to not just this amazing website but is a great source for all things businesslike in the diabetes world.)

Raising Funds

According to an exposé by Marie Claire in 2011, an estimated $6 billion is raised every year for breast cancer. HIV/AIDS raises more than that ($16.8 billion, according to AVERT.).

A 2010 article in Diabetes Health shows that the money raised for diabetes is…not anywhere near $16.8 or $6 billion dollars per year.

What does this all mean?

Diabetes is the Rodney Dangerfield of diseases. It gets almost no respect.

We’ve got a rising tide of diabetes diagnoses throughout the world (including a rise in Type 1 diabetes that has a lot of people alarmed), a small portion of the NIH funding going to diabetes research for the amount of individuals in the United States impacted by the disease, and we’re dying. (Yes. We are all dying. Every minute of every day. I’d just like to die of something else.)

Pancreases aren’t sexy. Boobs are. AIDS/HIV may not be sexy, but it has garnered the lion’s share of publicity and became the cause for many a famous person. (The Bill and Melinda Gates Foundation, anyone?)

I’ve lost extended family to breast cancer. I’ve lost childhood friends to AIDS.

I want those diseases cured. And…

I want diabetes to get the same type of support that these diseases do.

I want diabetes to stop being misinterpreted as a disease that doesn’t kill you like breast cancer and AIDS.

I want funding.

I want recognition.

I want the world to know that while we live well with this disease, we need to stop being the seventh leading cause of death in the U.S.

Do I want too much? No. Do I see a problem? Yes. And you know how the saying goes: “If you’re not part of the solution, you’re part of the problem.”

So, I’m going to be a part of the solution. I refuse to be a number.

 

No Manners

845059_65243846I use the right fork. Know the difference between a red wine glass and a white wine glass. Can adjust my greeting to a stranger based on their culture. But damn… apparently when it comes to my diabetes manners, I’m the queen of the Clampetts.

There’s an electric undercurrent of negativity towards Miss Manners in the diabetes community over her column titled: Do diabetic testing in private. It behooves everyone to gallivant over to that page so you can see the ludicrous response she gave to someone regarding how to behave when traveling with diabetes. (And the responses? Delicious.)

She thinks that if you have diabetes, you should be relegated to the airplane lavatory when you inject insulin or check your blood sugar.

She states:

Restrooms exist to provide a proper location for such necessary activities when away from home, and those who use them have no business monitoring the respectable, if sometimes unaesthetic, activities of others.

Here’s my response to her response:

No.

Wait.

No, thank you.

Wait.

Hell, no, thank you. 

It’s not like I’m removing a glass eye to wash it. Changing a colostomy bag. Shooting heroin. I’m using a lancet device to retrieve a tiny drop of blood that is placed directly on a test strip. Once it’s done, I’m good to go.

I’m not getting up and clambering over the frail octogenarian to get to the back of the plane where I’ll stand waiting for one of the two lavatories, watching the person in front of me do the “I gotta go” dance. I’m not going to contort myself while holding my breath due to the previous occupant’s obvious gastrointestinal issues with beans and cabbage. I’m not dragging my diabetes gear and having nowhere to put it.

And bathrooms are dirty. Dirty. Ewww.

Never you mind that single aisle is crowded. The drink carts are launched, cold lunches barreling down the single aisle, and I’m going to go to the bathroom? Nope. There’s a limited number of stupidly expensive sandwiches with wilted lettuce on them, and I’ll be damned if they run out before I get one. (I don’t fly much anymore and I miss my upgrade status. Moment of silence.)

People have a problem watching someone check a blood sugar? I’ve seen people on planes clip their fingernails. Throw up. Eat an entire 12″ hoagie with extra onions. Drink to excess and become verbally abusive to those around them. I would take some injecting insulin over them every day of the week. It’s less offensive.

Miss Manners? Let me tell you a little story:

At the age of 16, I was in the bathroom of a Burger King in my hometown. The bathroom stalls were all being used and I needed to inject my insulin, so I hiked up my sleeve, wiped an alcohol swab over the back of my arm, and inserted the needle while a woman comes out of the stall… and freaks out on me.

“You shouldn’t be doing drugs here!!!”

She thought I was a drug addict and that I was shooting up. Before I could say anything, she went running for the manager.

I was so horrified and ashamed that I left out the side door of the restaurant, crying. (I didn’t even have a chance to start the injection, so no hypo to add insult to injury.)

It took a long time before I was comfortable checking my blood sugar in public or even bringing notice of my diabetes anywhere. (I didn’t want to even wear a medical ID.)

Miss Manner’s column shows that the public still doesn’t get it. If I didn’t have to check my blood sugars by pricking my finger, I wouldn’t. If I didn’t have to take insulin to keep me alive, I wouldn’t. But these days, my opportunities to educate and advocate happen everywhere – including when I travel. I refuse to hide this disease for anyone. It’s part of who I am. A strong woman with a lot of good manners. I don’t scream out: “Hey, I’m going to squeeze my finger until blood comes out! Wanna gawk at me?” I quietly and respectfully check in the confines of my seat. But I am not going to hide it.

So, ma’am, I will not go to the bathroom to check my blood sugar or inject insulin. I will not RSVP to your rationale.

And if you think diabetes activities are unaesthetic, what about blowing your nose in public? People do that all the time. If you think any unaesthetic activity should be done in the confines of a lavatory of an airplane, the airlines will have to retrofit all of their seats to have a toilet underneath, because we all do unaesthetic things… everywhere.

 

 

504 Plans And The Insanity of Some People

AppleBack in the olden days, there were no 504 plans. (Feel free to cue the Scott Joplin ragtime music player piano and take your hat off while you’re inside the establishment, please. There are ladies present.) After my diagnosis in 1983, I skipped through the hallways of my school with a backpack full of syringes and needles and lancets, insulin bottles jingling melodically at the bottom of my bag. I wrote each of my teachers a letter about diabetes and what the symptoms of hypoglycemia were, handing them the letter and a roll of LifeSavers™ to keep in their desks.

Halcyon days, I tell you.

No one cared that I checked my blood sugar in class. I drew up my insulin in the bathroom and shot it wherever I felt like. The school nurse? Ha. My mother reminded me the other day that I knew more about diabetes and didn’t trust the school nurse to blow my nose, never mind participate my diabetes management. High school was much the same, but by that time, I didn’t bother with the cute little letter and the LifeSavers™. To be truthful, I didn’t bother much with my diabetes either. Reflecting back, I can say with certainty that the majority of my exams were taken with the haze of hyperglycemia clouding my brain. But when I did check my blood sugar and take insulin, no one batted an eye.

It’s nothing like that now, from what my friends tell me. Children with diabetes are encountering, in the mildest form, resistance to help with diabetes management. At its worst, blatant refusal and lawsuits filed to keep children with T1 in schools, even with a 504 plan in place.

What’s a 504 plan?

According to the American Diabetes Association, it’s this:

The 504 Plan sets out an agreement to make sure the student with diabetes has the same access to education as other children. It is a tool that can be used to make sure that the student, the parents/guardians, and school personnel understand their responsibilities and work through challenges or misunderstandings to avoid problems in the future. 

It’s not a wish list of things that the parents want the school to do (“Keep my child’s blood sugar between 80 and 140 throughout the day.” Uh, no.). It’s not unreasonable requests (“Provide a nurse to sit in the back of the classroom to monitor my child.”). It’s an agreement stating that the school will do, what the parent will do, and what the child will do. 504 plans can include:

  • Understanding hypoglycemia and hyperglycemia and taking appropriate steps under the child’s diabetes management plan to mitigate risks.
  • Permitting the child to test blood sugars and administer insulin – and if the child is too young, training a school professional to administer and test for them.
  • Making reasonable adjustments when the child’s blood sugar is high or low when completing academic assignments in class, such as tests. (This might include scheduling to take a test at a later time when the child’s blood sugar has returned to range.)

None of this sounds crazy to me. What do you think? 504 plans are not just for children with diabetes. If a child has a medical condition such as asthma or ADHD or a developmental disability, 504 plans are put in place to ensure that all children get an equal education.

Something is wrong when a school sends a note home in a backpack saying that a child with diabetes is not welcome in the school anymore, after a parent tries to enforce the 504 plan. (Here’s what’s wrong: it’s illegal. I’m not even going to get into the immoral part of it.) When school nurses won’t administer insulin or glucagon, it’s wrong. When a 504 plan is ignored, it’s wrong.

Yet, it still happens. The horror stories of parents who fight to have their children remain in public school and are forced to hire attorneys to ensure they are heard. The rigamarole these parents deal with and the hoops they jump through to make sure their children are safe are appalling. Parents of T1s already deal with enough. More than enough.

Safe At School

The American Diabetes Association has an entire section on their website called Safe At School. They also have Crystal Jackson, who is the name parents breathe as their gunslinger in the fight with schools who just don’t get it. And the media is always a popular choice to help raise awareness. (Public schools rely on federal funding. Don’t follow a 504 plan? They can lose federal funding. Seems insane, right? Yet, some people…some administrators… think they are above these laws.)

I’m still trying to understand why people who are responsible for a child’s education would teach everyone the lesson of denial, ignorance, and discrimination through their unwillingness to follow a 504 plan. It’s children, for goodness sake.

What are they teaching them?

You know what they are teaching me? Diabetes is still a mystery to the general public. Something to be feared (which it is, sometimes, but I digress). Something that they don’t want to deal with.

That’s not acceptable.

Not for me. My days of trailing my fingertips along metal lockered walls are long gone, but I would stand in them to stand up for these children. Any day of the week.

T1 Warrior Parents who have taken up 504 plan issues:

Moira has a great open letter to school administrators.

Hallie talks about the 504 plan from a teacher’s (and Mom of a T1’s) perspective. 

(There are more. Many more. It’s scary how many parents have to become well versed in 504 terminology and the law to keep their children safe at school.)

Diabetes Mine Innovation Summit 2013

Q: How do you fit millions of people with diabetes into a room that seats 120?

A: Send 10 Patient Voices winners to the Diabetes Mine Innovation Summit. 

2013 Diabetes Mine Patient Voices
2013 Diabetes Mine Patient Voices

On November 15th, an eclectic group of people converged on the Stanford School of Medicine for what has proved to be one of the most monumental days in my diabetes career. (OK, so it’s not a vocation that I would have picked for myself, but I treat it like a career, except there’s no time off and no 401K and the medical benefits are tepid at best.) Medical investors, the FDA, representatives from pharma and device manufacturers, non-profit icons, big names in diabetes, physicians, and for the first time ever, payers from a few large insurance companies all talked – sometimes with each other, sometimes at each other, and even at one point, yelling at each other about diabetes.

There was laughter, there was anger, and there was wonderment over the promise of technology and the frustration over the same technology. There were surreal moments and for the first time in what seemed like forever, a moment where I was left speechless, jaw gaping and heart pounding. Intrigued? Thought so.

Amy Tenderich, the woman behind Diabetes Mine and the Innovation Summit, welcomed everyone with a brief overview and the Patient Voices video, which I have already provided for you in a previous post. This summit was to share ideas surrounding the topic: “delivering on the promise of diabetes technology”. I’m going to give you a spoiler early in the post: the diabetes world is not even close to delivering on that promise.

Strip Safely and the FDA

Dr. Courtney Lias, the FDA representative of the In-Vitro Diagnostics division (overseeing pumps, strips, etc.) was first-up on the podium, giving an overview of the role that the FDA plays in the technology innovation machine. She stressed the importance of an open dialog between manufacturers and the FDA well before the tech is submitted for FDA approval. Requests for more data slow everything down, but if the FDA and the device manufacturer are skipping down the yellow brick road together, there are fewer surprises. (I don’t know how close a relationship the FDA and Dexcom, Tandem, and Animas have. There was a collective sigh heard around the country when the integration of Dexcom and these two pump companies were delayed for “more data”. Case in point.)

But what was a proud moment was the mention of the Strip Safely advocacy campaign held up as an example of advocacy that is working (for better or worse, I’m sure, in the FDA’s mind). As her slide titled: Patient Interaction stated: If our goals are aligned, can support our efforts. If not aligned or in sync, they can hurt policy implementation. Good communication is key. Bennet Dunlap, my partner in Strip Safely (He’s Batman. I’m Robin. I get to say “HOLY…..” a lot.) and I were tickled to see Strip Safely mentioned. We made a few waves with the FDA initially, but we also understand that they’re just as frustrated as we are. We need to work together to find a way to enforce the accuracy of the technology that is currently on the market.

Swept Away by Tidepool

This, my dear readers, was the reason I believe in the power of our community. Tidepool is a California Public Non-Profit that is putting into action my dream… or to be more accurate, it went beyond my dreams and straight into my fantasy. (No, not that one. Shhh…)

Tidepool is providing an open-source platform for real-time data from all devices I wear to the cloud, securely, sharing the data in real-time with anyone who should see it. Text messages to parents if their children go hypoglycemic while at school? Yep. Text message to physicians if a certain parameter is hit? Yep. It hit every one of my requests and some that I hadn’t imagined, including a little app called nutshell, which Brandon Arbiter created. You input a meal (in the example, it was Huevos Rancheros) and the carb count and how much insulin you take to cover it. The next time you eat that, you can look back and see if you went outside your acceptable range – and you can adjust accordingly.

I could type for hours about how much I admire what they are doing – and if they have a fan club, I want to be their President. (Heck, I’d make T-shirts and do spirit hands while cheering in their office. Too much? Probably.) They are a non-profit and as such, need a little financial help. Take a look at what they do and if you like what you see, you can donate to them. Out of all that I saw in relation to technology at the summit, this is the one thing that I am most excited over. That data would help a lot of us make good decisions in real-time. We need to support projects like this that will help us use the technology that we pay dearly to use.

Third Verse, Same As The First (Hat Tip to The Violent Femmes*)

Anna McCollister-Slipp, co-founder of Galileo Analytics and a T1 to boot, was blunt. Since the last DM Innovation Summit, nothing has really changed. We are still stymied by proprietary technology, frustration of the complexity and the cost, and the stall on the innovation disruption needed to make our lives with diabetes easier and more manageable. She was an excellent speaker, but left me feeling deflated and a little depressed. It’s not as if I didn’t know this already, but sometimes I want it sugar-coated Splenda-coated just a bit.

Passion With Payers

And now begins the heated, passionate part of the summit. As I mentioned earlier, my jaw dropped during the summit – and it happened more than once during the panel presentation of five different payers. It began rather sedately and I’m sure that those sitting up at the front of the room, including the moderator (who was incredibly patient), expected this to muddle along smoothly.

They obviously haven’t met the lot of us in the wild.

Insurance companies are not altruistic. They are a cross of risk-management gamblers, firefighters, and paper pushers looking to keep as much money in their pockets as they can. Despite my description, this isn’t a bad thing all the time. Capitalism is what it is.

Like Anna’s earlier discussion, they were blunt, but unlike Anna, they didn’t understand their audience. We are patients and doctors and manufacturers who were stunned to hear them talk, quite frankly, too openly about how they try to avoid new technology and paying out more than they have to, and that patients are not their customers.

My jaw was already unhinged, but another Patient Voices winner, Corinna, sent it crashing to the floor when she stood up and confronted the panel, interrupting the moderator, shouting:

“I don’t give a shit about your spreadsheets!” 

If I had a pin, I could have dropped it and heard it jingle jangle on the floor.

The silence was complete.

She wasn’t done. She told them what she thought and the floodgates opened, with other Patient Voices, advocates, clinicians and manufacturers representatives letting the panel understand what they thought of their policies and ideas.

The insurance company representatives became understandably defensive, with one stating that he felt personally attacked. In my opinion, if you’re in the insurance business and are sitting in a room of people who are denied over and over again for the items that keep them and their patients alive and healthy, please don’t expect to have roses laid at your feet or people thanking you for your cost-cutting limits and restrictions on strips and insulin.

Will they be back next year? Time will tell. I’m sure that some of them will wear thicker skin if they do attend.

Survey Says…

Diabetes Mine surveyed a large group of people with diabetes about technology and the results were presented by Kyle and… Oh, look. Me.

photo-2

We’ve got concerns. And complaints. And wishes. And if you want to see the survey results, the data is all right here.

Once again, I was struck with the feeling that none of this data is surprising to people with diabetes, but it may be to those who design the technology for us (and even a greater surprise to those insurance companies who often prohibit us from using the technology that does work).

That’s Not All

I haven’t even gotten to share the afternoon’s interactive creativity session and the closing presentation that rocked my world by Dr. Joe Smith of Westhealth. (Promise you I’ll give you that later. It’s worthy of a post entirely on the topic he covered.) I walked out of that room, my heart filled with the hopes and dreams of millions of us… and the desire to fight for the technology innovation that we need.

You want to hear some other perspectives? You should!

Scott Strange – I’m Sure All Patient Concerns Are Absurd 

Amy Tenderich – Exploring Disconnects & Black Boxes

Wil DuBois – A Skeptic’s View of Our Summit: Anger and Hope in Palo Alto

 

My thanks to Amy Tenderich and the sponsors of the Diabetes Mine Innovation Summit. As a scholarship recipient, I was reimbursed for my flight, lodging, and some meals while attending. I also received a free registration for the summit and a bag that included a Misfit Shine from Target.

*Prove My Love by The Violent Femmes is one of those songs that makes me think of my youth…and laugh.