Two Minute Diabetes Advocacy: 21st Century Cure Act + CGM

708615_95129272One hundred years ago, those of us with Type 1 diabetes would be pushing up daisies. Pining for the fjords. Deader than doornails. Not living.

Today, thanks to amazing researchers and the advancement of technology, we are living longer, healthier lives. We are living in the 21st Century. No flying cars or Jetson butlers, but yet… we are making headway, at least on the healthcare front. But we need your help.

Here’s your two minute diabetes advocacy challenge for today.

(Less time than it takes to pop some microwave popcorn!)

The 21st Century Cures Act is a bipartisan (meaning both Democrats and Republicans are interested, which you know is rare!) attempt at vaulting U.S. healthcare into this century by changing the ways drugs, devices, and treatments are approved and marketed. It’s a whopper of a draft bill, currently, with five sections:

  • Title I—Putting Patients First By Incorporating Their Perspectives Into The Regulatory Process And Addressing Unmet Needs
  • Title II—Building The Foundation For 21st Century Medicine, Including Helping Young Scientists
  • Title III—Modernizing Clinical Trials
  • Title IV—Accelerating The Discovery, Development, And Delivery Cycle And Continuing 21st Century Innovation At NIH, FDA, CDC, And CMS
  • Title V—Modernizing Medical Product Regulation

If you want to read all 393 pages of the bill, have at it here.

There is a section for “Breakthrough Devices.” As The Regulatory Explainer (an amazing site!) explains:

As with breakthrough drugs, breakthrough devices are those which represent “breakthrough technologies,” are intended to treat conditions “for which no approved alternative exist,” offer “significant advantages over existing approved or cleared alternative,” are “otherwise in the best interest of patients”  and/or have the potential to “reduce or eliminate the need for hospitalization, improve patient quality of life.”

Continuous glucose monitors (CGM) fall soundly into that category and are currently covered under many private insurance plans (and some state plans), but once you age onto Medicare, if you have Type 1 diabetes and use a CGM, say good-bye to your coverage of that device. Out-of-pocket is your only option, and it’s cost-prohibitive. As people with Type 1 diabetes live longer, we are seeing that the tools that will help us most are not being offered by CMS/Medicare. This has to change.

We need to ask the Energy & Commerce subcommittee to include continuous glucose monitor (CGM) coverage for Medicare participants in the 21st Century Care Act.

Here’s where you can help in less than two minutes. (Throw that popcorn into the microwave right now.)

Got Twitter? Yes? Go!  

(No? Sign up for Twitter and help raise your voice to your representatives in Congress. They do listen! But it will take a little longer than microwave popcorn.)

Hit the start button on your microwave.

1. Click here. (http://www.stripsafely.com/the-twitter-page/) and read the quick info on that page.

2. Find out if your state representative is in the Energy & Commerce Subcommittee list on the page. (If you don’t know who your rep is, click here and enter your zip code. Voilà!)

3. Find your state and your rep and click on the “CGM in 21st Century Cures” and TWEET!

4. Share that page with everyone you know. (Look for the SHARE THIS link at the bottom of that page.)

5. You’re done. Carefully open that bag of microwave popcorn; contents may be hot!

Thank you for letting your representative in Congress know that including CGM coverage for Medicare participants is the right thing to do. No one should be denied coverage of this breakthrough diabetes device because of age!

Two Minute Diabetes Advocacy: CGM Medicare is Back and FDA Goodness

708615_95129272It takes two minutes to make a difference for people with diabetes. Here’s the latest on how you can help.

CGM Medicare Bill: It’s Back!

Want the back story? It’s here.

Right now, Medicare does not cover CGM devices, leaving seniors with diabetes without access to this technology. Among the most important goals of our advocacy and education efforts is to ensure that those entering the Medicare program at age 65 do not experience disruption in their diabetes management. (None of us with diabetes is getting younger. If you are, please let me know your secret!) I don’t want a single person to be denied coverage of this device simply because of their age (or any other reason for that matter, but first things first, right?) and we have an opportunity to make a difference for our entire community.

Remember that this bill will also help when artificial pancreas technology comes to fruition. We need everyone to get involved.

The Medicare CGM Access Act has to be reintroduced in both the House and Senate in order to move forward. (New Congress = sort of starting from scratch, but this is a good thing, in my opinion…)

Representatives Tom Reed (R-NY) and Diana DeGette (D-CO) just re-introduced the bill in the House. Senators Susan Collins (R-ME) and Jeanne Shaheen (D-NH) are expected to drop the parallel legislation in the Senate very soon.

57 members of Congress co-signed the bill last year. This is a great start, but we need your support and the support of your communities to drive more co-signatures.

Here’s what you can do RIGHT NOW:

Contact your representative (for the first time – or again!) about supporting and co-sponsoring this bill. 

Yes, you may have done this last year, but you may also have a new representative in your district or your representative may not have heard you the first time. Every. Voice. Matters.

FDA Goodness:

Clinical Considerations of Risk in the Postmarket Environment

If you care about the medical devices that we use each day to manage our diabetes (think insulin pumps, CGMs, blood glucose meters) and the risks that we take (and how to mitigate those risks), then sign up to be a part of this workshop. This will be webcast, so you can participate from the comfort of your home or office, but sign up ASAP. Registration will close on April 13th. Those in the DC area should know that you can attend this in person on the FDA Campus. Here are the details:

The FDA has announced a public workshop entitled “Clinical Considerations of Risk in the Postmarket Environment.”  The purpose of the workshop is to provide a forum for an interactive discussion on assessing changes in medical device risk as quality and safety situations arise in the postmarket setting when a patient, operator, or member of the public actually uses the device.  For details and registration, please see: http://www.fda.gov/MedicalDevices/NewsEvents/WorkshopsConferences/ucm436365.htm

Date, Time and Location:

This meeting will be held April 21, 2015, beginning at 8:30 a.m. at the following location:

FDA White Oak Campus
10903 New Hampshire Avenue
Bldg. 31, Room 1503 (the Great Room)
Silver Spring, MD, 20993

Get some knowledge and take the world by storm. We can do this together!

A House Divided…

Symbol home from hands isolated on whiteWhether you want to attribute it to Lincoln’s famous speech regarding slavery or a line in the New Testament (Mark 3:25), I’m repeating it for all of us to hear:

“A house divided cannot stand.” 

I have diabetes. It’s an insipid disease that slithers into lives, laying waste and fear in its wake. It cannot be compared to other diseases; it’s unfair and pointless. Moments are stolen from all of us who live in the shadow of its open maw, and sometimes not just moments, but the very breath we draw.

It does not matter what permutation of diabetes exists in my body. In every form, regardless of subset, the insufficient supply of insulin damages cells and organs and brains. Depending on the insufficiency, the damage can be rapid or so slow that it’s not noticed until well after the damage is done.

Every person with diabetes is at risk for stroke, heart disease, retinopathy, blindness, kidney disease, neuropathy. Every person.

Every family with diabetes is subjugated to stress, heartache, frustration, and financial burdens. Every family.

The Divided House

I am a member of the diabetes community. Anyone who lives or cares for someone with diabetes is a part of the community. We all want the same end result: long, healthy lives free of the burden of this chronic illness.

Some of the community focuses their time and effort on cures. Others on technology. Emotional support. Financial issues. There are many avenues this community travels down together. All are worthy when the goal is to help make our lives better.

But this community, this house I love, is a house divided.

Over the past few years, as voices amplify with the Internet’s loudspeaker, the rise of separatist factions is coming to bear. Here are the voices from the crowd:

“I’m sick of the public thinking I’m Type 2.”

“Those people could have just not gotten fat and they wouldn’t have gotten Type 2.”

“Type 1s talk about how hard it is, but they don’t realize that Type 2s struggle too.”

“My son did nothing to deserve getting Type 1.”

“I’m thin with Type 2, but people think that it’s lifestyle, not genetics that got me here.”

“I’m not like them.”

 But you are. We all live in this house.

The Numbers Don’t Lie, But They Are A Little Fuzzy

Here are the latest numbers, taken from JDRF’s General Facts page and the National Diabetes Statistics Report 2014 from the CDC. (It’s pretty. With graphics. And it’s a PDF so you can print it out and put in on a bulletin board. Or maybe that’s just me.)

Who Lives In Our House

29.1 million people have diabetes in the United States.

21.0 million of them are actually diagnosed. The rest (8.1 million, because that’s easy math for me to do) is undiagnosed. People walking around with slightly elevated blood glucose levels… enough to do long-term damage.

3.0 million of those diagnosed with diabetes are Type 1. (Only about 10 percent of the total diabetes population.)

The dollar cost of diabetes, direct and indirect for 2012, which is the latest stat, is $245 billion. (The indirect part is work loss, disability, and death.)

The numbers are fuzzy because we don’t look at the big picture. What does this house look like? Is it a duplex with no way to help each other if someone needs support? Is it an apartment building with tiny boxes for parents of T1s, T2s, adult T1s, undiagnosed/pre-diabetes T2s, Medicare recipients, uninsured, and T2 kids all coexisting and trying to get landlord’s attention?

Our House is Getting Crowded

1429629_22426307Every thirty seconds, we get a new member in our house. Every thirty seconds, someone in the United States is diagnosed with diabetes. We need a stable house with a firm foundation, because we need more room. The rate of diabetes is not decreasing; it’s increasing.

Without strong, unifying voices, we’re going to be fighting over who gets to use the remote control or who hogs the bathroom in the morning.

Step outside of the house and go stand on the sidewalk. How do you think our house looks like to a passerby on the street?

  • Is the exterior a hodgepodge of different colors, because we couldn’t decide?
  • Are windows boarded up because a particular group doesn’t need the sunlight shining on them?
  • Do we have an inviting path to greet everyone who knocks?
  • Is there a beautiful, intricate melody with different voices singing the same song, but allowing each group an opportunity to solo… but the chorus is the same? Or does the world hear cacophony? Or worse… nothing at all because we’re all just whispering different things?

I do not want a diabetes house divided.

I want a diabetes home.

Home, Sweet Home

1278626_89193909How can you help make our house a home?

  • Educate the public about diabetes: the differences AND the similarities between the different types. (Get educated yourself by reviewing the statistics and the research and the information that many major diabetes organizations provide to help explain.)
  • Let your policymakers know that it doesn’t matter what type of diabetes we have; we ALL matter when it comes to funding and public policy. There are bills being introduced on the Hill and in some states that can help – or hurt – people with diabetes. Find out what you can do. Even if you’re a Type 2, you can lend your support and your voice to CGM Medicare bill.
  • Ask people to describe their diabetes when you’re having conversations. If you (or your child) has Type 1 diabetes, learn from a person (children get Type 2 as well, although it’s not as prevalent) with Type 2 about what they do every day to live well with diabetes.
  • Focus on what is important: life WITH diabetes, not matter what Type, deserves attention and respect. In fact, we all as humans deserve attention and respect. Find the common ground and even if you don’t have much common ground, there is a piece that we can all build from…

Help build our community.

Help build our home.

Help make a home for everyone impacted with diabetes and let the world know that we are united.

 

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!