DPAC – Diabetes Patient Advocacy Coalition: Why?

Your day just got a little more exciting.

Why?

WE_ARE_DPAC-03

You can make a difference…in not just your life, but the lives of 29 million Americans and their families, friends, and employers.

Wait! Don’t sip your coffee and click to the next tab on your browser. (Sip your coffee and keep reading.)

If you are like I was (not too long ago), the thought of diabetes advocacy was simply this:

“Like I have time. Someone else will do all the hard work. Whatever.”

Now…

  • What if I told you that someone did all that hard work for you?
  • That advocating for yourself, people you love, heck… anyone in the U.S. with diabetes is now simple, easy, and quick?
  • One website to learn about the issues impacting people with diabetes being decided by lawmakers and governmental agencies and then tell them quickly how you feel?
  • A few clicks and you’re done, but you’ve helped the diabetes community and become a diabetes advocate?

Allow me to introduce the Diabetes Patient Advocacy Coalition (DPAC) and invite you to join me and others who care about our community.

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Who is DPAC? You are. I am. We all are.

 

DPAC is a non-profit and non-partisan organization founded to provide united, simple, and effective advocacy opportunities for people impacted by diabetes for safety, quality and accessibility of care.

And there is no cost to be a part of it.

Sign up and take action immediately from the comfort of your keyboard. You won’t have to figure out who your government representatives are or how to contact them – it’s done for you. After you quickly learn why it’s important to let them know how you feel on a diabetes issue, you just… Click. Click. Done.

I don’t think I’ve ever met anyone who said: “I’d like to spend my day reading over proposed legislation and policy all day.” I certainly don’t. DPAC does that for you, boiling it down to the key points that you need to know.

Why?

Why bother to join? Have you ever been to a concert where the booming sound from the speakers drowns out a conversation you’re trying to have with your friend? One conversation gets lost sometimes.

Have you ever been to a concert where the singers asks the crowd to belt out the chorus of a song? When everyone is raising their voices as one… the whole audience is heard. That booming sound comes from the people in the crowd. We are that crowd.

The diabetes community deserves to be heard by our policymakers as a united voice. 

Why?

1434784_54457950Why join the Diabetes Patient Advocacy Coalition? I already do stuff with other diabetes organizations, you say. How is DPAC different, you say?

DPAC will keep policy makers’ attention on people with diabetes. Diabetes advocacy is like diabetes care; both are long-term processes with no quick fixes. 

Every diabetes organization has a mission; sometimes the mission and the issues that need to be addressed don’t align. Organizations may support one bill and not another – and that’s fine! Some wonderful diabetes organizations are constrained by their non-profit structure, preventing lobbying or the type of advocacy that pierces the heart of the matter.

DPAC is pro-diabetes, pro-existing organizations, pro-getting our diabetes voices heard by policymakers – and that’s the sole focus. Where there is already a movement by one wonderful organization, DPAC adds to the swell. Where an issue is not being given the spotlight, DPAC will shine the light. DPAC doesn’t want to re-invent the wheel; they want the wheel to go faster and gather steam.

If you’ve heard me mumbling over the past few months about a project that I’ve been working on… this is it, along with Bennet Dunlap and some pretty fantastic people and organizations. I’m all about making diabetes advocacy easy – and now it is.

Help raise a united diabetes voice and become part of DPAC. Come join me. 

 

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.

 

You Deserve More Than Roses…

1526731_10153042281067328_1047114686242280778_nI hear her laughter and my heart swells with love.

I cannot imagine my life without my daughter.

I cannot imagine my life without the insulin that keeps me alive so that I can hear her laughter.

And yet… there are children in the world who do not have access to the insulin that will keep them alive.

No laughter.

No life.

No more. 

In parts of the world (some closer to the U.S. than you think), there is a problem getting insulin to children.

Lack of access to insulin remains the most common cause of death in a child with diabetes (Gale, 2006). The estimated life expectancy of a child who has just developed diabetes could be less than a year in some areas (Beran et al, 2005). Many die undiagnosed, others through lack of insulin or lack of expert care. In some countries, expert care is available but resources are limited and so early and serious complications frequently lead to death in young adulthood. – IDF

We know that insulin is expensive in the United States, but for some families in the world, the cost of insulin is more than a family will make in an entire year. And you know what can change that?

Us. 

roseFor the past few years, the Spare A Rose, Save A Child online campaign has helped to raise funds for the International Diabetes Federation (IDF)’s Life for a Child campaign.

Life for a Child began over a decade ago and gives donor funds directly to diabetes centers around the world, getting children insulin, test strip supplies, and care to help these children live… and laugh.

How Can You Help?

Valentine’s Day is coming.

Flowers are pretty. Chocolates are nice. Perfume smells lovely (Sometimes.)

But flowers wither. Chocolates get eaten. Perfume wafts away into the air.

You deserve more than that. 

Five dollars.

The cost of a single rose. Or a very expensive piece of chocolate. Or a few spritzes of perfume. (Or even that teddy bear that gets purchased at the gas station on the way home.) Five dollars gives a child with diabetes in an underdeveloped country a month of life.

Let those who love you know that you’ll take one less rose. One less piece of chocolate. Skip the spritz. You want them to give five dollars (or more) to the Spare A Rose, Save A Child campaign.

You can have them donate once or… they can remind you that you are loved throughout the year with a monthly gift to the program. You get a sweet acknowledgment and the knowledge that you are helping people all over the world hear a child laugh.

Want to get your office in on the action? Done. Easy-peasy-give-insulin-to-kids-squeezy.

Your donation is tax-deductible. (So, for those of you who are romantic AND financially savvy… you can say I love you and write it off. It’s still sexy.)

What About People YOU Love?

And of course, think about the people YOU love. You can donate in their name, then print out this card (or the other one) to let them know you love them more than roses.

You love them more than life itself. 

Click here to give life for a child. 

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