Category Archives: Advocacy

The Other Side of the Colorado Success

May 24, 2019 – 2:00 pm

By now, you know that Colorado’s governor signed a bill into law this week capping insulin co-pays at $100 per month. Great news, right? It really is, I guess. But I’m still left with some questions.

The most obvious question surrounds Colorado as the only state to enact such a law. What about the other states? What if other states pass similar measures, but the co-pay number is different in each state?

Colorado caps co-pays at $100 per month. Let’s say neighboring Wyoming decides to cap it at $40… if you live in Denver, would you drive a few hours to pay $60 less per month for insulin if you could? How many other locales might be affected by such a scenario? Might people from Wyoming drive now into Colorado to try to save on insulin? Is that how we want to do this?

Actually, my state of Maryland had a Senate bill introduced in the last session that would have eliminated nearly all co-pays for both insulin and test strips. It didn’t make it to passage, but it was in the same vein as the Colorado bill and in fact, would have gone quite a bit farther.

Should it have passed, I’m sure that a family or two might have considered moving from southern Pennsylvania or Delaware, or even Virginia or West Virginia into the Old Line State (I have no idea why Maryland is called that). Insulin is that expensive.

So I’m concerned about a state-by-state approach to insulin access issues.

I would rather see our federal government, fractured as it is right now, come together on legislation that would really move the needle on this issue. Like eliminating co-pays for all patients requiring insulin and test strips.

And while we’re at it, how about eliminating co-pays for drugs required to treat HIV, or serious allergies, or any number of additional conditions? Basically, if it keeps you alive, no co-pay.

I don’t think that’s too much to ask for. It’s part of why I’ve been to Capitol Hill twice in the last eight months to lobby lawmakers.

I’m happy that Colorado has taken steps to address this issue. Now it’s time for our federal government to make positive progress to address access to affordable insulin, guaranteeing it with federal legislation.

I think that’s something all of us can live with.

By StephenS | Tagged , | Comments (2)

Video: Tell your story wherever you can

May 10, 2019 – 10:11 am

I thought I would share this little nugget today… it’s a story from TRT World, which, according to Wikipedia, is “… a Turkish international news channel broadcast 24-hours per day in English.”

It’s more about affordable access to insulin here in the USA, and though I’m only featured briefly (this is what they aired from almost two hours with me), and though it’s on a channel that few have in the cable lineup, I was happy to tell my story and tell my truth on this subject again.
The video also features Christel Marchand Aprigliano in an uncredited role(?).


That’s what you have to do. If you’re passionate about something, tell your story wherever someone will listen. You never know who it will touch, and you never know what good it might do someday.

Have a great weekend, and keep on advocating!

By StephenS | Tagged , | Comments (1)

DPAC Champions Ride Again

May 8, 2019 – 10:11 am

Last week was a capital week on Capitol Hill. Advocates joined again with Diabetes Patient Advocacy Coalition (DPAC) for another Policy Training Meeting, culminating in a stellar Hill Day advocating before Congressional staffers.

On April 30 and May 1, over 20 advocates convened to learn the latest on important diabetes issues and how to effectively bring our own stories to bear when lobbying lawmakers. We learned a lot about the issues we were there to talk about, and a lot about how to talk about them.

What did we talk about? Affordable access to insulin, of course. It’s the hot diabetes issue right now, and we wanted to make sure that our House Representatives and Senators didn’t forget that people with diabetes need relief from the high cost of insulin now.

We also talked about H.R. 1840 and S. 814, the Expanding Access to Diabetes Self-Management Training Act of 2019. This one was introduced late in the 115th Congress, and it just didn’t have time to get through before the election. Now it’s back for the 116th Congress.

H.R. 1840 and S. 814 aim to remove some of the barriers in place that are keeping Medicare recipients from learning how to better manage their diabetes today, next year, and for years after that. There’s a lot to like in this bill, and I encourage you to use the links above to find out if your Representative and your Senators have cosigned on this important legislation. If they haven’t cosigned yet, use this link to go to the DPAC website and ask them to put their support behind these bills today.

Now, let me take a moment and talk to you about how important your voice is when it comes to affordable access to insulin, and a better path toward self-management training for seniors in America. Hint: it’s super-important.

Maybe you’ve seen the tweets and Facebook posts from advocates who were in Washington last week, and thought, “I dunno, all that advocating stuff might be over my head”. But it’s not!

There are over 40 people who have taken part in DPAC Policy Training Meetings and Hill Days in the past seven months, and most of us weren’t too sure we could handle it either. But we received great training from Christel Marchand Aprigliano, CEO of Diabetes Patient Advocacy Coalition; Leyla Mansour-Cole, Policy Director of DPAC; and DPAC’s Board Vice President, Stewart Perry. We also received valuable lessons from Diabetes Educator and Pharmacist extraordinaire Jasmine Gonzalvo, and from Logan Hoover, Senior Legislative Assistant to Representative Tom Reed, Chair of the Congressional Diabetes Caucus.

They were able to give us the knowledge that we needed to be able to speak effectively, and the confidence to share the passion we all have for improving the lives of people living with diabetes wherever they live in the USA.

In short, you can do this, and I hope that when the next DPAC Policy Training Meeting is announced, you sign up to be a Champion too. We need your voice. Your voice is worthy.

Do it for yourself. Do it for a family member. Do it because you pay taxes and they work for you. Do it for all of the people who can’t go to Washington but will benefit from your advocacy and passion. When you do, you will leave with a wealth of knowledge and a renewed sense that being a DPAC Champion makes a crucial difference for everyone affected by diabetes.

By StephenS | Tagged , , | Comments (1)

Update

April 23, 2019 – 10:11 am

It’s been a while since I’ve mentioned my experiences on my state’s Advisory Council on Health and Wellness. Here’s a quick update after a flurry of meetings, including our latest quarterly full council meeting:

I’m finally getting used to our quarterly full council and Diabetes Committee meetings. It takes some preparation, but also preparation at the right time, so I, along with my more-than-capable co-chair of the Diabetes Committee, can present the latest and greatest on what the committee is working on, but also explain why we’re working on what we’re working on.

As far as committee meetings go… that’s required even more involvement. Instead of the quarterly meetings we’re required to hold, we’ve committed to monthly meetings since beginning the ardent task of framing the state’s first comprehensive diabetes action plan.

The work is ongoing, but I’m finally starting to feel like we’re making progress, and that’s good. Hopefully, I’ll have more to tell as we start to pull the various parts of all this together.

I should mention that we’re all indebted to the various staffers at the Maryland Department of Health who have been working with us during this time. They have provided guidance, data when we need it, and a lot of patience as we navigate this process. This is their job, but they’re doing it at times that are not always normal office hours, and I admire their dedication.

One other part of my council duties that I probably haven’t mentioned before is my role as part of an ad hoc legislative committee. Our council is comprised of four committees (Diabetes, Heart Health, Arthritis, and Physical Fitness), and we each chose a representative for the legislative committee.

Maryland’s legislative session runs only from January until April. When bills were introduced in the House or Senate, if the Department of Health saw a potential role for the Advisory Council to weigh in with either support or opposition to a bill, it was sent to our committee for review. In very short order (usually 72 hours or less), we needed to read the bill, decide whether to support, oppose, or take no position on a bill, with written reasons that support our point of view.

One such piece of legislation was Senate Bill 410, which, among other things, would have eliminated co-pays for insulin and test strips for Marylanders insured under anything other than a high deductible insurance plan. Naturally, since people on HDHPs are the most negatively affected by climbing co-pays, it was unfortunate that they were left out of the bill.

But, it would have been a huge win for everyone else, so the council was overwhelmingly in support of it. I was even able to add some of the wording and data for our letter in support of the legislation, which may have been my proudest moment serving on the council so far.

Unfortunately, the bill didn’t make it from the Senate over to the House, and the bill is dead for this year. If it comes up again next year, I hope we can get it through to passage. Overall though, my work on the legislative committee has been instructive and fulfilling.

Finally, I want to remind anyone from my state that our council and committee meetings operate under laws that ensure that we have a free and open process while we perform our duties. You probably would think that attending a meeting would be boring, but you are welcome to attend. For the record, the next full meeting of the Maryland Advisory Council on Health and Wellness is on July 17 at 4:00 p.m. If you want to know more, just ask me.

And if you have an interest in something like this… if you want to serve others, be part of something bigger than yourself, then go for it. There’s nothing that qualifies me for this role, other than the fact that I’m a passionate advocate and I have a little experience with this sort of thing.

You likely have the same qualities, or even better ones. Your community could benefit from your interests, and your perspective. Service to the community is noble and important. As I’ve asked so many times here… Why not you?

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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.

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