Tag Archives: DPAC

Proof

April 12, 2019 – 10:11 am

Maybe you read somewhere that there was a hearing held last Tuesday by a U.S. House of Representatives subcommittee of the Energy and Commerce committee, on the issues of insulin affordability.

Maybe you watched the hearing and heard testimony from Christel Marchand Aprigliano, CEO of Diabetes Patient Advocacy Coalition, and Dr. William Cefalu from the American Diabetes Association, and JDRF’s new CEO, Aaron Kowalski, as they spoke with the passion that’s been fueling them for years, with the confidence that comes with knowing the truth is on their side.

Maybe you looked in on another hearing held this past Wednesday by the same subcommittee.

In the room being questioned were representatives from the three largest insulin makers doing business in the USA, and the three largest pharmacy benefit managers. It must have been uncomfortable for them at times, as Representative after Representative, republican and democrat, quoted testimony from last Tuesday’s hearing and didn’t allow any of them to get comfortable pointing their fingers at the others.

If you’re new to the diabetes community, or if you live outside of the United States, it might be difficult to understand what the past week and a half has meant to all of us here.

After years of straining to get noticed, our voices are finally being heard. Anyone who’s been marginalized (just ask any non-white person in America) can tell you that being heard means being validated.

The proof of this validation comes after years of asking, pleading, letter writing, Children’s Congresses, and in more recent years, e-mailing and tweeting. It comes after several organizations worked together to bring the issue of affordable access to insulin to the forefront.

And we’re not done yet. There were a lot of statements made by House members of the Oversight and Investigations subcommittee on Wednesday, but the law didn’t change. Pharmacy Benefit Managers can still play their pricing games. Drug manufacturers are still generating a lot of revenue from insulin.

Meanwhile, people without insurance and people of limited means are still rationing insulin. People enrolled in high deductible health plans are still dreading the beginning of a new plan year, when they will pay full price for their insulin and supplies until they pay out thousands of dollars before they hit their deductible limit.

So before you think this is over, and you missed the advocacy train, let me tell you: there is plenty more for all of us to do. We’re on the right track. We need to keep the steamroller going.

And as more than one Representative mentioned, it’s shameful that people had to die before this issue could get noticed. Let’s do what we can so we can reach a day when no one will have to worry about insulin affordability again.

Thank you to all of the advocates big and small who helped open the door to hope again for so many of us. The light is beginning to peak through. Here’s hoping we’re basking in the sunny warmth of a job well done very soon.

By StephenS | Posted in Advocacy | Also tagged , | Comments (0)

Take action Now (it’s soooo easy)

April 2, 2019 – 10:11 am

Courtesy of Diabetes Patient Advocacy Coalition, I wanted you to know about a proposed change to Medicare Part D coverage (that’s drug coverage) that could be a big win for older people in America. And you can help add your voice to the growing chorus in support of this change!

Today, there are a lot of middlemen in the insulin pricing process. Those middlemen spend a lot of time negotiating discounts from drugmakers for insulin, and then putting those discounted savings right into their own pockets.

Under this system, the middlemen negotiate the $300.00 retail price of a vial of insulin down to about $85.00. Then they keep the difference for themselves. Medicare recipients don’t see that discount at the pharmacy!

But… under a proposed rule, those middlemen would have to pass the discount on to Medicare recipients, significantly lowering their cost of staying alive. Who couldn’t be for a change like that?

So here’s what I’m asking you to do: Go to the DPAC website, check out the slick informational graphic at the top of the page, and then add your name to the DPAC Rebate Reform Petition in support of this proposal.

I promise you it will only take a minute. And you’ll be one of many who have added their name to the list in support of something that will help to make diabetes patients, and everyone living with a chronic condition, a lot more likely to be able to afford the drugs they need to live their best in their senior years.

CLICK HERE to add your name to DPAC’s Rebate Reform Petition

Your one minute of advocacy can change lives. As someone with parents on Medicare, and as someone who will be eligible for Medicare in about eight years… Thank You.

By StephenS | Posted in Advocacy | Also tagged , , | Comments (1)

Why not YOU?

January 29, 2019 – 12:31 pm

In case you don’t follow me anywhere else on social media, or in case these might have fallen off your radar somehow, here’s one more reminder about two important gatherings coming up this Spring.

Many of you are interested in amplifying your advocacy voices, and rightfully so. In the interest of leaving no vocal stone unturned, I emplore you to apply to each of these.

Just in case you’re wondering, I don’t get anything out of encouraging you to apply… I only get more competition from you, and you get my thanks for using your platform for good.

Both of these gatherings are near and dear to my heart, and both have deadlines that are fast approaching.
 
 
Friday, February 1 is the deadline to apply to attend HealtheVoices, a unique conference featuring over 100 attendees living with 40 or more chronic conditions. You get a chance to learn about each other, and learn what others are doing to impact their communities.

It’s where I got the inspiration to begin podcasting almost four years ago. It’s also where I’ve made friends and allies that I never would have made anywhere else.

Here’s the link to apply for HealtheVoices 2019, April 12 to April 14th in Dallas, Texas.

To read about my experience at HealtheVoices last year, CLICK HERE.
 
 
You have an additional week, until February 8th, to apply to attend the next DPAC Policy Training Meeting in Washington, D.C.

You know how DPAC (Diabetes Patient Advocacy Coalition) makes it easy to advocate on important diabetes issues through their app? This is all of that, in person.

You’ll learn how to effectively bring diabetes to the forefront in front of elected officials and policy makers. On the final day, you’ll use what you’ve learned as we go to Capitol Hill and state our case in the halls of Congress.

It all happens April 30th to May 2. Your passion is needed! Remember to apply by Friday, February 8th.

Here’s the link to apply for the next DPAC Policy Training Meeting. Find out more and apply… your voice is important.

To read about my experience at the last DPAC Policy Training Meeting, CLICK HERE
 
 
I encounter people all the time who never get the chance to have experiences like this. I also speak to people who believe they’re not big enough or important enough to do these things.

But hey, who am I? I’m not any bigger, better, or badder than you are. Why not you? These are two fabulous opportunities open to anyone living with or affected by any type of diabetes, and I hope you take advantage of the chance to attend. If you have questions, e-mail me. Good luck!

By StephenS | Posted in Advocacy | Also tagged , | Comments (1)

Advocating with DPAC Champions

October 5, 2018 – 10:11 am

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.

By StephenS | Posted in Advocacy | Also tagged , , | Comments (7)

Advocacy Works.

June 19, 2018 – 10:11 am

I suppose we’ve all become jaded a bit over the years. When you ask for intelligent changes to policy or rules, you get used to having your concerns ignored, sometimes validated, and mostly not acted upon.

But a recent announcement flies in the face of that argument, and before any more time goes by, I think it’s important to talk about it.

The news, which you may have heard: the U.S. Centers of Medicare and Medicaid Services (CMS) has agreed to allow seniors on Medicare to view CGM data on their smartphones.

As Diabetes Patient Advocacy Coalition noted, this is pretty big news, and it’s thanks to advocacy of this organization and others, as well as individual advocates across the country, that this injustice has been righted.

There are a couple of reasons why I wanted to talk about this.

To begin with, this is how advocacy is supposed to work. In this instance, people saw that seniors on Medicare were being denied the right to use their smartphones as a medical device. Those advocates banded together and took their message to CMS, who were empowered to consider the advocacy message and act on it. And they did.

Second, I wanted to talk about this win because it’s a win. So often, we advocate for causes, and our causes remain causes for years until some movement happens on them (and that’s the most times I’ve written “causes” in one sentence in my life). Once our cause is helped along by a decision or a product launch or something else, we move on to the next cause so quickly that we almost forget the fact that real progress was actually made.

I don’t want that to happen here. Let’s stop and smell the lithium ion of our cell phone batteries and recognize that something pretty great happened here. And you and I had a hand in making it happen.

Let’s take a moment and remember that advocacy works. And let’s remember to thank all those responsible for making it work.

By StephenS | Posted in Advocacy | Also tagged , , , , | Comments (1)
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