Tag Archives: congress

Advocating with DPAC Champions

It’s been another incredibly busy week, in the middle of an incredibly busy year. I’m through talking about it, but I just thought I would mention that as the reason why I’ve been silent here this week.

But last weekend… last weekend was full and eventful. I was fortunate enough to have been able to go to Washington, D.C. for the very first DPAC Policy Training Meeting.

Disclosure: DPAC paid for my hotel and parking for this event. All opinions are owned entirely by me.

Diabetes Patient Advocacy Coalition (DPAC) held this training meeting to help about 30 of us advocates learn about important issues that many of us have been discussing, and to learn how to more effectively advocate our positions before lawmakers. Saturday and Sunday were about learning, and Monday was about going to Capitol Hill and putting what we learned into action before Congressional staffers.

Saturday and Sunday were spent learning the ins and outs of why the price of insulin is getting higher and higher. We also learned about two measures before the United States Congress right now: House Resolution 5768 and Senate Bill 3366 – Expanding Access to Diabetes Self-Management Training Act of 2018.

Let’s take a look at each of these, one at a time.

Access to affordable insulin

It’s no secret that the price of insulin is skyrocketing. In fact, the cost of insulin has tripled in the past 15 years. That is not sustainable.

However, the Congressional Diabetes Caucus has requested information from a number of end points in the insulin supply chain (fancy talk for patients, medical professionals, pharma, pharmacy benefit managers). They’ve received information back, and they’ve been compiling their findings in a report, which is due to be released soon… hopefully, within the next month.

At the moment, there is no legislation before Congress which will address the price of insulin. But if we’re going to get there, we need to know where the pain points are. We’re hoping this report will shed some light on that, and that’s why we asked lawmakers to share that report the moment they get it, with their constituents and with DPAC, because there’s nothing better than transparency when it comes to something like this.

Diabetes Self-Management Training Act

Sponsored in the House by Representative Tom Reid (R-NY) and co-sponsored in the Senate by Jeanne Shaheen (D-NH) and Susan Collins (R-ME), These companion bills aim to increase access to diabetes self-management training for senior citizens who are on Medicare. This is incredibly important for a number of reasons.

Imagine living on Medicare for 10 years after retirement. We know how much diabetes technology and treatment can change in just a decade. Sometimes it’s like drinking from a fire hose. But imagine not having diabetes self-management training (or DSMT) paid for by Medicare when you need it then. Today, Medicare pays for 10 hours of training in the first year, and just 2 hours after that. This bill would change that.

Did you know that Medicare recipients can’t receive Medical Nutrition Therapy (MNT) and DSMT on the same day? So, if you’re 75, and it’s already an effort to get to the hospital where the training is conducted, but you have to go one day for MNT and another day for DSMT. Doesn’t make sense, does it? This bill would change that.

The bill would also allow for DSMT to be delivered outside of a medical professional setting… think local library or fire department meeting hall. There’s also a provision to look into expanding virtual training via telehealth or online. Both of these could be game-changers for people in rural communities like Dorchester County, Maryland, which has the highest prevalence of diabetes of any county in my state, but where many people live 30 or more miles away from a hospital.

We know that since we’re nearing the end of the 115th Congress, there’s virtually no chance of these measures passing before the end of the year. But we went and asked lawmakers to sign on as co-sponsors of the legislation so that when this comes up (as it undoubtedly will) in the 116th Congress, it will be much easier for these Congressmen and Senators to say yes.

For more on this important legislation, click HERE.

The best part of the long weekend? Going to the U.S. Capitol with my fellow DPAC Champions to advocate before Congressional staffers. My meetings with staff from the offices of Rep. John Sarbanes (D-MD), Senator Chris Van Hollen (D-MD), Senator Ben Cardin (D-MD), and Senator Patty Murray (D-WA) were productive and helpful. We didn’t get a single No on anything. A huge success.

Before I wrap up, a few Thank Yous:

Thanks to Christel Marchand Aprigliano and Leyla Mansour-Cole from DPAC for organizing the weekend and doing the cat herding so the DPAC Champions would be in the best position possible to fulfill our mission.

Thanks to Logan Hoover, Legislative Assistant for Representative Tom Reid (R-NY), who is Chair of the Congressional Diabetes Caucus. He spent time with us on Sunday to give us valuable information on how to share our stories and make an impact with the people we met on Monday.

Thank you to Jasmine Gonzalvo for being an amazing supporter and educator over the weekend, on the importance of both of these initiatives. And to Stewart Perry and George Huntley for doing an amazing job of explaining how “market forces” (my quotation marks), rather than patient empathy, have impacted the price of insulin in the USA.

Finally, thanks to our friends at the Endocrine Society and Lions Club International for partnering with us in this effort. It takes a village, and I’m glad to have these people on my block.
 
 
It’s easy to think of this event as a culmination of lots of effort on the part of DPAC, its Board of Directors, its Patient Advisory Board, and DPAC Champions. I tend to think of this as a beginning.

There was a construction site across from our hotel this weekend, with a big wall surrounding it, and messages on the wall. When I saw two of the messages, I knew what this weekend meant for me.
It took all of us from a “What if?”…

…to a “Why not?”

Whatever the message, I’m confident that the progress we’re making will help to yield positive results for People With Diabetes in the United States.

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What good is new technology if you can’t pay for it?

My great nephew celebrated his second birthday this past weekend. I celebrated another day on the blood sugar roller coaster.

It was a busy day. Maureen’s sister and two of her children had been visiting for a few days, and they left Saturday morning for the trip back to Ohio. So we were up at 6:00 a.m. to see them off. Maureen also had to pack and leave for a few days taking care of some pets in another part of town. Add in another event on the other side of town prior to the birthday party.

I don’t know if it was the choreography of putting the day together, or my eat-whatever-you-can-whenever-you-can-eat-it dietary selections, but I was sitting over 200 mg/dL for hours. The correction doses of insulin I had been giving myself were finally paying off around 4:30 in the afternoon as I headed off to the birthday party.

My glucose level was coming down, though not fast enough to cause alarm. I was at 109 mg/dL when I arrived. I added a pre-bolus for dinner, and thought I was set.

But as luck would have it, I didn’t time dinner perfectly. It was a little later than I thought it would be, and as we finally sat down to eat, my eyes glazed over and I got that “Stop Talking and Eat!” look from Maureen.

Everything righted itself eventually, but I’ve had a couple of days like that back-to-back now. It shows me that I’m good with my diabetes management, but I’m not perfect. That’s usually a good time to remember that there are tools and technological advancements on the way that promise to help reduce the burden of days like this. In the case of artificial pancreas research, Someday is a lot closer than ever before.

Then, almost in an instant, the next thought popped into my head: But… what good is a great new device if you can’t pay for it?

The U.S. House of Representatives passed their version of “repeal and replace” health care legislation on Thursday. What was already expensive could get prohibitively expensive should the Senate follow suit. We know there are already people using Facebook groups to try and get the insulin they need. Test strips are $1.00 or more per strip, which adds up fast. The retail cost of a new insulin pump is thousands of dollars.

For people who desperately need insurance to help defray some of these costs, purchasing insurance through a high risk pool that costs more (someone my age living with diabetes might have to pay $20,000 or more per year) creates an impossible dilemma.

There are 14 doctors and nurses serving right now in the House, and 3 doctors serving in the Senate. In the House vote, 10 of 14 voted for this legislation. Do No Harm, my ass.

From govtrack.us


Managing diabetes was already expensive before Obamacare. It was still expensive under Obamacare. It will be prohibitively expensive under this new legislation. The House of Representatives, at least, are exacting an impossible price on Americans simply because they hate the previous president.

But I’m not giving up without a fight. And I will remember at the ballot box. I’m going to call and send e-mails consistently, even after this fight is over. If I’m going to have to manage my diabetes every day while protections for myself and my loved ones are being taken away, only because they’re expensive, I’m not going to let them rest. I will make their victory a difficult one. I will make their victory unworth the price they have to pay to get it. What about you?

Let Congress know that you’re not going down without a fight. And if they try again, you’ll fight again.

CLICK HERE to download the DPAC app. With the DPAC app, you can get timely alerts, contact elected officials without going to a website, and insert your own diabetes voice into the conversation faster and easier than ever before.

THIS PAGE has every member of the House of Representatives listed, links to their websites, and most importantly, their phone numbers.

THIS PAGE lists contact information for every member of the U.S. Senate.

Please call!

No CGMs on Medicare? What????

On the heels of the Spare A Rose, Save a Child campaign, I’d like to ask for your help on another very important issue.

sue-b_head-square
Sue Berger, also known as Sue from Pennsylvania over at Test Guess and Go, is on a quest. And her quest is one that speaks to me, because in a little over 13 years, I’ll be right where her husband is. I’ll be 65 in 2027, and that means I’ll be getting pushed off to the Medicare system here in the USA.
 
 
 
Why is that a concern? Well, among other things, being on Medicare means you can’t have a CGM anymore. Oh, if you have deep pockets, you can buy one outright. But Medicare will not pay for a CGM. Doesn’t matter if you have one prior to age 65. Doesn’t matter if you need a CGM due to hypoglycemic unawareness, or just because it might help you actually stay healthier. It won’t be approved by Medicare.

Sue is working hard to change that. Up to now, she’s carried on a nearly single-handed campaign to get Congress involved. And guess what? Congress is now involved! Representative Carol Shea-Porter (D-NH) has introduced H.R. 3710: Medicare CGM Coverage Act. The resolution (H.R. stands for House Resolution) allows for coverage of continuous glucose monitoring systems if recommended by a doctor. In case your civics classes were decades ago like mine, the Act would have to pass the House, then get a majority vote in the Senate, without any changes to the Act. If the Senate approves changes to the Act, then it goes back to the House for another vote on the amended bill. If both houses of Congress finally agree on the final language, the Act goes to the President for his signature. So it might take a while, which is why your help is needed now to help get the ball rolling. Now.

As Sue mentioned in her post on this issue, a lot of the Diabetes Online Community has asked how they can help with her crusade. Well… here’s your chance. According to Sue, there are three things you can do to help get this wrong righted:

– The most effective step you can take is to ask your own Representative to cosponsor the bill. Good news! There is one co-sponsor so far, Representative Matthew Cartwright (D-PA). But we need many more!

– Call your Congressperson’s DC office and ask for the email address of your Congressperson’s Legislative Assistant for health issues.

– Email the Legislative Assistant the text of Shea-Porter’s Dear Colleague letter (available on Sue’s post), along with a personal note. That way they will understand why the issue is important to you, the constituent, and they will also have the Dear Colleague to show their boss so that he/she will know how to sign on.

As sue says, “The only way to fight Medicare’s denial of the CGM is to get the guideline changed. The best thing that we can do now is to let our voices be heard and join with Congresswoman Shea-Porter and her new cosponsor, Congressman Matthew Cartwright [D-PA17] in asking Congress to pass H.R. 3710, the Medicare CGM Coverage Act of 2014.”

This is a very important issue for me, because I’ll be in the Medicare system toward the end of the next decade. And if you live in the USA, you’ll be in the Medicare system at some point too.

At the beginning of this month, the DOC did a lot to help kids in developing countries get the insulin they need to survive. Let’s spend at least part of the second half of February fighting for those older Americans who, through no fault of their own, cannot get coverage for a CGM just because of their age.

To view Sue’s post at Test, Guess, and Go, click here.
The post also includes a sample letter you can send to your congressperson, and the Dear Colleague letter from Rep. Shea-Porter. She also has a kind of resource guide for bloggers to help with getting the word out.

 
 
 

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