Tagged: diabetes advocacy

I Don’t Expect You To Know…

1436093_55811447My car runs on unleaded gas. It goes from point A to point B (and sometimes to point H when I don’t follow the GPS correctly) and it has an engine. I understand the basics of internal combustion and in my more adventurous youth, I even changed my spark plugs and oil on my own. (I think every woman every person should know how to do that.)

I drive it with the knowledge that I don’t know everything about how a car works. I watch Top Gear (the U.K. version, of course), but that does not make me a gear head. There’s a lot I don’t understand about cars.

I’m not expected to know; that’s why expert mechanics exist. If it makes a funny noise or squeals as I brake, I take it to someone who can diagnose the issue and hopefully fix it without putting me into hock. Even people who change my car’s oil may not understand how the engine works or what that funny noise is.

Replace car with diabetes and other appropriate phrases related to a disease. (Heck, if you want to go for broke, you can replace car with any major illness.)

Now re-read those first two paragraphs.

I Don’t Expect You To Know…

I don’t expect you to know how diabetes works (or doesn’t work). There’s a lot of moving parts to the intricate dance we do each day to get from Point A to Point B (and we sometimes end up at Point H without any idea of how we got there). I don’t expect you to know how I feel when my blood sugar is crashing to the floor or soaring towards the ceiling; my symptoms and side effects are unique (although many share the same symptoms and side effects). I don’t expect anyone to know what the diagnosis signs are or how they can help me, and millions of other people, live well.

All of this to say: Let’s stop berating others if they don’t know about diabetes, especially those in the medical field. Sounds crazy, right?

“What do you mean the ER nurse didn’t know what a CGM is?”

“The optometrist asked you what your blood sugar was this morning?”

“The doctor wanted to take your insulin pump off in the hospital?”

“The LPN told you that she has diabetes, too, when she saw your medical alert bracelet, but that hers wasn’t severe?”

“The nurse said that they’d give you insulin just when you eat, but no basal insulin at all?”

We are the experts…

We are the experts. We live with this disease 24/7/365 ad infinitum. Most of the medical world hasn’t had more than a mention of diabetes in a class for their certification or degree (with the exception being CDEs and endocrinologists). Are you amazed at that?

This is the curriculum for a BS degree in Nursing at NYU. There isn’t a single “Diabetes” class in their four year program, either as requirements or electives. Would it shock you to learn that, according to a Diabetes Care journal article in 1990, 20% of nursing faculty surveyed said that their students had 0 to 8 hours of clinical experience with diabetes patients during their education? (And most of those patients were over the age of 65?)

269548_4087We have a choice…

When we encounter someone (in the medical field or in public) who doesn’t understand what diabetes is or has a misperception of what we do every day, we have a choice. We can express incredulity at their lack of knowledge and become defensive about our disease, or… we can educate them. 

“The ER nurse didn’t know what a CGM is?”

Nope, because when she went to school, CGMs didn’t exist. And really, the majority of people with Type 1 diabetes don’t use (or don’t have access to use) a continuous glucose monitor. So, those who do use them are a subset of a subset of a large group of people with diabetes. A simple explanation of what a CGM does and how it helps you prevent hypoglycemic or hyperglycemic episodes can go a long way to not only educate that ER nurse, but perhaps create an ally or future advocate in the ER for diabetes.

“The optometrist asked you what your blood sugar was this morning?”

Yep, because even if you put that you’re Type 1 on your intake form, they don’t know how often you check. You can simply smile, explain that while you checked this morning, you’ve also checked twice (or six times!) since then. You can talk about the difference between Type 1 and Type 2 and that all people with diabetes can get the same eye complications. (Retinopathy and macular edema doesn’t discriminate between types.)

“The doctor wanted to take off your insulin pump in the hospital?”

If you’re wearing an insulin pump, you may know more about diabetes than that doctor. You can begin a dialog as to why the insulin pump needs to be removed. They may not understand the technology - and it’s up to you to explain that your pump supplies a basal rate and boluses when needed. However, if you’re in the hospital because of DKA or a severe hypoglycemic episode, the pump may be the issue. Have the conversation - a two-way conversation - and ask that your endocrinologist or a hospital endocrinologist be brought in to consult.

(Side note: That all being said, if you encounter an endo or a CDE who doesn’t understand the basic mechanics of diabetes, please run, do not walk, out of that office.)

When people say things that make you angry because it’s clear that they don’t understand diabetes, take a breath and remind yourself that you didn’t know much (if at all) about this disease before you were diagnosed. It’s frustrating when you encounter someone in the medical field who may not understand, especially because they are dealing with you. They just haven’t been taught. Yet.

Teach…

We can’t expect anyone to know, but we can expect everyone to learn. And if we want everyone to learn, then it’s up to us to be knowledgeable about diabetes and the devices that we use. We should be able to explain in simple terms and invite questions. We should be able to ask our own questions and be our own advocate. We should be able to smile and talk about the differences between types of diabetes and explain that there are more that the types have in common than separate them.

We won’t change the world overnight, but imagine if you could calmly explain the disease to someone and walk away knowing that they’re a little more knowledgeable about diabetes? Or give them websites so that they can learn more?

Sounds crazy, right?

Let’s be crazy.

 

 

 

Two Minute Diabetes Advocacy: #Vote4DM

If you have two minutes, you can make a difference for people with diabetes (even if YOU don’t have it). Got a Twitter handle? Have we got a deal for you…708615_95129272

It’s an exciting time of year! It’s football voting season. Congress seats will be up for grabs and we want to remind those currently in power that they can’t forget the millions of people with diabetes and their friends vote. And we want them to know what’s important.

You want your voice heard in Congress?

Then tell them to #Vote4DM.

There are three bills that are currently in play up on Capitol Hill:

S539/HR1074 - National Diabetes Clinical Care Commission Act

Did you know that there are 37 federal agencies that play some role in the prevention and treatment of diabetes?  (Have you ever worked with 37 people in one group? Try 37 agencies!!!) These agencies aren’t always working together, resulting in miscommunication (or lack of communication), reinventing the wheel, and wasting of resources.

The National Diabetes Clinical Care Commission Act will coordinate diabetes efforts. The Commission will include federal agency representatives, patients and health care providers, and will use existing funds at no extra cost to taxpayers to do its work.

S945/HR1274 - Access to Quality Diabetes Education Acts

This bill will increase access to diabetes self-management training (DSMT) by designating credentialed diabetes educators as certified providers for purposes of outpatient DSMT services under Medicare Part B. It’s “budget neutral“, meaning that the cost of the outpatient services will be offset by the savings provided with the program.

 S. 2689/HR5644 - Medicare CGM Access Act of 2014

Medicare does not currently cover CGM devices, leaving people over 65 with type 1 diabetes (T1D) without coverage for continuous glucose monitors. Did you know that right now, costs for a hypoglycemia inpatient admission average $17,564 per visit!?

Passage of the bill will facilitate Medicare coverage of CGMs, and help pave the way for the next generation of CGM-related technologies, such as artificial pancreas (AP) systems.

unnamed-3Here’s what you can do.

Participate in the two Tweet-Ins for #Vote4DM: a 24 hour Tweet-In beginning on 10/22 (Wednesday) at 8pm EST and then another 24 hour Tweet-In beginning on 10/29 at 8pm EST. (If you can’t make these times, you can still tweet these messages out. It’s just important that you tweet them!)

StripSafely‘s made it so incredibly easy for you to use the power of Twitter for good.

Let’s get a 100% #VOTE4DM from our Congressional representatives and vote diabetes out of office.

1. Find your representative in Congress easily by clicking on this link and entering your zip code. (Remember that name or keep that page open for your reference.)

2. Go to the StripSafely Twitter page and let the blitz begin. (Look! A football reference!)

  • You will send three Tweets per person on the list: One for each of the bills currently on the Hill.
  • We are either asking them to cosponsor the bill or thanking them for cosponsoring the bill.

Now:

  •  Tweet the Senate and House leadership and the Diabetes Caucus leadership, regardless of what state you live in.
  •  Tweet your state senator(s) and district representative. 

3. Share the StripSafely Twitter page with anyone who has diabetes or cares about someone with diabetes. (That means share with everyone you know.) Ask them to tweet. 

And that’s it. Mark the date and time in your calendar and help us raise awareness for these non-partisan bills that will help people with diabetes. Share this info with people via Facebook, Twitter, and emails. We would love to shake the Twitter tree and get Congress to see that we won’t be quiet anymore about keeping us safe!

 

#DOCAsksFDA Needs You

FDACalling all PWDs! Calling all PWDs! Pick up the bat phone!

 

O.K., really, just need you to take a quick survey to help the entire diabetes community. 

On November 3, the FDA will host an unprecedented discussion between the diabetes community and senior agency leadership (both drugs and devices). 

The event will be live webcast from 1 - 4 pm.

How much of a big deal is this?

Big. Super mega colossal big. 

The event will include a panel of patients (T1 and T2), as well as representatives from ADA, JDRF, and diaTribe.

Each of us live with challenges due to our diabetes every day. Take a few moments to share your thoughts on what’s important when it comes to living with diabetes.

The survey, posted over at Diatribe, is short. The results will go DIRECTLY to the peeps over at FDA and will influence the dialog that will happen on November 3rd. Diatribe is asking those with diabetes (Type 1, Type 2, MODY, LADA, etc.) to help gather all of our thoughts.

We need to show the FDA that patients care about these issues, that patients have valuable input to share, and that the treatment options we have are still not good enough. 

As soon as the link to register for the live event is posted, I’ll get you the details. In the meantime, the survey awaits your input.

Help the FDA understand what we want for our future.

They’re listening.

Let’s tell them.

Three Is A Magic Number

Out of all the Schoolhouse Rock videos, this is my favorite. (I’m Just A Bill and Elbow Room are runners up.)

There is something magical about the number three. And that song (and the cover done by Blind Melon, too.)

But today, three is not a magic number. It’s the number of trigger finger releases I am supposed to have in a few weeks.

I say supposed to have, because like any empowered patient, I’m going to to do my research about having three fingers done on one hand when only one is actively triggering (although my pinky and my middle finger - hey!). I’ll ask around, look up information in medical journals and perhaps even get a second opinion by another hand surgeon. Why, you ask?

My Appointment Was Not What I Expected

The appointment itself was interesting, because if I had met the surgeon a few years ago, it would have been a different conversation. Here’s how it went (and my thoughts as it happened).

My appointment was for 12:10pm. Brought into a room by Jason with a M.A. on his name tag.

::What does M.A. stand for in this office? Master of Arts? I don’t think so.::

“So, why are you being seen today?”

::Does ANYONE read the reams of paperwork they make me fill out? Anyone? Bueller?::

I give him the lowdown. 

“How do you know that it’s trigger finger?”

::Again, paperwork. Four previous trigger finger release surgeries.::

“You’ll get an x-ray and then the doctor will be in to see you.”

From the time I saw Jason and got two X-rays on my hand, it was another 40 minutes before I saw the doctor.  He breezes in with a guy behind him wheeling a cart with a computer on it. His own personal stenographer for electronic health records.

He knows I have trigger finger. There are no questions. I didn’t get an opening statement in.

Because of my friends, Drs. Sean and Tamara Oser, who present an incredible session at Friends for Life, I know this statistic: 

In a well-known study of the survey phase, Beckman and Frankel found that physicians prevented patients from completing an opening statement 77% of the time. Those who interrupted their patients did so in a mean time of 18 seconds.

He beat this statistic to death.

“Hi, I’m Dr. X (not his real name, although that would be neat, right?). So, let’s see your hand.”

He examines it. Palpitates the area where it hurts. I wince. He keeps asking me to open and close it, telling me to make a fist.

::I can’t make a fist, dude. My finger won’t do that anymore. If it did, I wouldn’t be here.::

He pokes at it again, while I explain that I’ve had trigger release done before, but not here and not for this finger.

“O.K., so I’m going to give you a cortisone shot.”

Options

::Oh, no you aren’t.::Water Punch

::He didn’t even give me options. Ask me if I’ve ever had a cortisone shot in the FOUR other fingers I’ve had trigger finger. Explain that I could choose: physical therapy, cortisone injections, percutaneous release or open surgery release. Four options. I know which one would work for me, for most Type 1 diabetics, but HE DIDN’T GIVE ME OPTIONS.::

“Dr. X, I’m not doing a cortisone shot. It’s been proven and published that it’s not a successful treatment option for individuals like me with Type 1 diabetes. Surgery is almost always done in these cases following a cortisone shot.”

He looks at me, then turns to the steno guy, who is now looking confused.

“I’ve done the research. I am an e-patient.”

He looks at me again. He says:

“I’ve done over 10,000 release surgeries. Most people with diabetes do end up with surgery.”

The steno guy is wide-eyed. Dr. X nods to me, then tells the silent interloper with the computer:

“We’re going to do surgery.”

He turns back to me, starts palpitating my palm again and asks if there is any pain when he presses here or here.

::Yes and yes.::

“You know that you’re already showing signs of triggering in your pinky and it’s only a matter of time before you’ll have to have the pinky and the middle finger done. So, let’s go ahead and do all three while we’re in there doing the ring finger.”

::I am so over this trigger finger thing. Whatever.::

After this brief conversation, he leaves and I schedule surgery, but not before he popped his head in and told me that I would probably want to schedule it at one surgery center over the other he uses, because the anesthesia company he uses does not accept insurance at the one closest to my house.

::In my next life, I’m coming back as an anesthesiologist.::

If this had been a few years ago, I would have blindly accepted the cortisone shot, then floundered for weeks dealing with super high good sugars and staggering amounts of insulin to bring it down, eventually ending up in his office again, this time to schedule surgery.

I have done a lot of research, talked with my friends in the DOC, and had this done four times already, I didn’t go in blind. I just came out angry.

Angry that I wasn’t offered a choice. Angry that I had to state that I was going to have the option he didn’t initially present to me. And then I am angry because I am not even sure I should have three fingers released when I know only one needs to be done right now.

Questions

So, for those of you who have had trigger finger release surgery, has anyone had THREE fingers done at once? What would you do?

And maybe the other question I have is this: Is it wrong to expect doctors to have a conversation with you about options, because right now, I’m as confused as the poor steno guy?

 

 

 

 

 

Two Minute Diabetes Advocacy: MDDS

Tick-tock, y’all. 708615_95129272

This is a last minute push to get comments on the FDA docket currently out for medical devices. You have until 11:59pm ET Monday, August 25th to get this done.

Two minutes. That’s all it takes.

What is MDDS?

Medical Device Data Systems.

These are systems that, in the FDA’s words, facilitate

“the electronic transfer or exchange of medical device data from a medical device, without altering the function or parameters of any connected devices.”

 

Think about your Dexcom information on an iPhone or a tablet or a computer or a smart watch. Think about seeing boluses in real time. Think about being able to view medical data NOT on the device itself. For parents of kids with diabetes… kid is at school and mom or dad can see BGs in real time.

FDA thinks that this type of technology doesn’t introduce much additional risk, so they want to lessen the regulatory process (i.e. red tape) for these devices.

We totally agree. 

However, FDA isn’t clear on the topic of “active patient monitoring”, so our goal is to encourage the FDA to

  • Specifically address the importance of giving patients access to their own health data on multiple devices/screens (the more access the better), and…
  • Clarify whether CGM-related technologies will be included in the MDDS relaxed regulatory process. (We believe they should be.)

If you want to read up on this, you can get it from the source (FDA) and you can get additional information over at Strip Safely.

This is what you can do RIGHT NOW:

1. Copy the information below. 

I am encouraged by the FDA’s draft guidance on MDDS. I support the FDA’s position that technologies that transport data, without changing values, are low risk. I believe that access to medical data should be available on multiple platforms that are accessible to both medical professionals and patients. Access to this type of data is becoming increasingly essential in healthcare, with the potential to reduce costs and improve outcomes – in fact, not having timely access to needed data poses a far greater risk. I strongly support access to this type of data and am pleased to see FDA recognizing its importance.

People living with diabetes depend on data in order to minimize the chance of life-threatening complications that can arise with very little warning.

Suggestions:

The draft guidance seems to be focused on data provided by MDDS to healthcare professionals. It should be modified to also explicitly state the value of access by patients, particularly for chronic conditions like diabetes where patients need access to their own data to manage their own care as safely as possible.

Real Time:

The draft in section V-B seems to precludes active patient monitoring. Specifically how or if this impacts diabetes is unclear. A clear definition of active monitoring should be included in the guidance. I strongly suggest that real-time access by patients to their own data *not* be defined as active patient monitoring. I strongly support including in this guidance more open access to information from continuous blood glucose monitoring for patients with diabetes. The appropriate risk of device performance is regulated through the device PMA, and shifting CGM data to secondary screens does not in any way increase risk. From a patient perspective, secondary screens significantly decrease risk by making information more readily accessible to the patient. This is particularly relevant for those of us who may be unaware of early stages of hypoglycemia.

ER and Hospitalizations:

Geller et al estimate in JAMA (JAMA Intern Med. 2014;174(5):678-686. doi:10.1001/jamainternmed.2014.136.) that almost one hundred thousand Americans a year are treated in the Emergency Room for insulin related hypoglycemia and that about one third of those are admitted. Timely access to real time sensing data may help prevent many of these ER visits. This suggest real opportunity to mitigate risk through secondary device display of CGM information.

Multiple Data Sources:

Existing regulations state that ‘Accessories to classified devices take on the same classification as the “parent” device. An accessory such as software that accepts input from multiple devices usually takes on the classification of the “parent” device with the highest risk, i.e., class.’ (http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/HowtoMarketYourDevice/PremarketSubmissions/PremarketNotification510k/ucm142651.htm ) People managing diabetes often use multiple devices to provide the data needed to follow care instructions. Bringing that data into a single application would improve patient understanding. For example finger stick measured blood sugar, CGM trends, amount of insulin infused, and the time of each are all information that patients juggle. A dashboard displaying all relevant diabetes data would improve safety and reduce risk, compared to forcing the patient to consult multiple devices and displays.

FDA’s Dr. Courtney Lias offered promising comments on diabetes and mobile devices at the Keystone 2014, “Practical Ways to Achieve Targets in Diabetes Care” sessions. Closer Look reports that Dr Lias, in comments on artificial pancreas, spoke of a strong FDA interest in consolidating devices through mobile technology to facilitate better diabetes care. She reportedly spoke of “component artificial pancreas system,” where patients could choose component devices of a system. I fully support the vision Dr Lias shared. This proposed MDDS guidance can encourage logical, safe and incremental steps towards that future by opening multiple diabetes devices to display on a mobile devices.

Conclusion:

Diabetes patients implement the individualized care programs created by our doctors based on real-time data from multiple FDA-approved medical devices. Easing the accessibility of data from those devices improves our ability to follow our care team’s instructions. I support the FDA’s adoption of MDDS guidance that incorporates a nuanced appreciation of the low risk and incredible value in using MDDS to transmit and display diabetes data.

2. Click here and paste the copied comment into the comment box. Wanna get fancy? You can add why this is important to you. There’s a 5,000 character limit, so you’ll need to delete some of the copied comment, but they’ll get your gist.

3. Then do this. 

  • Fill out your information. You’re commenting as an individual so UNCHECK the box that says:
  • “I am submitting on behalf of a third party”
  • Click the Category, “Individual Consumer”
  • Click continue.
  • Review, check the confirmation box
  • Submit your comments. You even get a receipt to confirm your comments were posted.

4. Do a little dance and high five yourself. You just raised your voice for diabetes advocacy. You rock.