Tag Archives: advocacy

What’s Next?

June 13, 2016 – 9:08 am

Like you probably did, I read Kerri Sparling’s blog post about how she’s still unhappy that nothing has happened since the United Healthcare/Medtronic Diabetes dustup. Like her, I can sense the dust settling at this point, and I wonder if anything meaningful will come of all our vitriol just a month ago.

I’ve thought about this from time to time since the announcement was made back in May, and I’ve come to the conclusion that there are some things I know, and some things I don’t know about all of this. While we know the issue, and what’s at stake, we all undoubtedly feel a sense of resignation, that “this is how business works and there’s not much we can do about it”.

Well, that may be true. Maybe there’s nothing we can do about it. I don’t think it’s that simple though. I do know that if we’re going to turn the tide of businesses trying to rule our access to tools designed to help us be as healthy as possible, certain things need to happen. In no certain order, here are just four of those things.

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Holes need to be poked in this arrangement. I’ll bet you can state one or two things that are wrong about this business deal right off the top of your head. We need to find more things that are wrong with this, and point them out, over and over again, to anyone who will listen. We need to find out things that are wrong about the businesses and the people running those businesses that are wrong. I’m not advocating personal attacks, of course. But is there a track record here that needs to be noted? Maybe an indicator of what’s to come based on similar tactics these companies/people have employed in the past? And we need to keep hammering those points home. In the current business climate in the USA, these people already know that they can get away with making arrangements that only suit themselves and not patients. We need to make it uncomfortable for them to do so. As uncomfortable as possible, even if it’s one blog post at a time, one insurance claim at a time, one protest at a time, one person standing up and stating what is right. We cannot let injustices go without standing up and pointing them out. Over and over again.

Tweak the message. Why do you think JDRF gets such big dollars for research? Let me ask you another question: do you ever see someone like me in JDRF literature? Of course you don’t. That’s because even though I have the same disease as a cute ten year old, time and again people will react positively to the message that a child doesn’t deserve to live with this, even if I’ve been living with it for at least fifteen years longer.

Okay, I’m a little off topic here, so let me bring it back to the issue at hand. Anger is good… it gets our blood flowing, it’s often the catalyst for developing platforms for change. But if you can’t tell a story, a compelling story, a heart wrenching story about why all patients need access to the best care and drugs and devices, people are going to question why they should care. This is where I’m at a disadvantage. I’m good at telling you what’s happened, but I’m not always good at making it overwhelmingly compelling. But I know I need to do that. We need to turn our outward message of anger into inward concern for actual people. And quickly.

These companies need to be hurt where it counts– in the financials. Sorry to be the one to tell it so bluntly. But let’s face it: by and large, as long as company execs are getting their bonuses, they really don’t care about you or I. This deal falls apart when it no longer makes financial sense, from either a corporate or a personal point of view, for it to continue. I don’t know if that means we find a legal way to keep them in court fighting for their stupid deal (and fund the fight), or if that means we encourage a boycott of United Healthcare and Medtronic for years to come, or if it means that we encourage patients to find ways to make United Healthcare pay more in claims under this agreement (which they would fight). But when the money is no longer there for this deal, there will be no reason for it to continue.

Relentlessness. Do you think The CEO of United Health Group, or the President of Medtronic Diabetes are actually thinking about any of this anymore? They’re not. Of course they’re not. They knew that there would probably be an initial reaction. They knew that the initial reaction would probably die down. Now they’re just going on with their lives like nothing ever happened. You’re just a dollar sign… you’re not a person to them.

I’m not a big believer in the fact that everything needs a coordinated effort to accomplish a big goal. But here’s one instance where a little coordination could come in handy. I’ll give you an example: sit-ins at lunch counters in the south back in the 60s. White authorities were sure that all that was needed was to arrest the African-Americans sitting at the segregated lunch counter, and it would all be over. But as soon as the initial protesters were arrested, new protesters immediately came forward and sat down in their place. Authorities only thought there were a few protesters… they didn’t count on many, showing up over and over again. That’s what we need.

As a community, our initial reaction to all of this was wonderful, and creative, and even inspiring. But now there’s nothing. A coordinated effort that has one person writing about it this week, another meeting with their elected officials the next week, bombarding state insurance commissioners the following week– that’s how we start to chip away at the wall that’s been built between business and patients. Little by little, over and over, never giving up, until we either force an end to this type of practice or make it unsatisfying for companies to engage in this kind of behavior in the first place.

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As U.S. citizens, we believe in our original Declaration of Independence and our Constitution, which promote the idea of choice as a basic right for all people. Those documents don’t say anything about the right to squeeze out as much profit as possible, or that doing so at any cost to patients is okay.

I don’t have a great plan, or anything nearing all the answers. But I do know that the one thing we can do, all of us, is continue to assert that our human right to choose is the most important message in this debate. You think this collaboration between UHC and Medtronic fosters innovation? I don’t care if it does… it destroys my right to choose (and it doesn’t foster innovation– quite the opposite). You think it gives patients a best-in-class platform to manage their diabetes? I don’t care… it destroys my right to choose, today and in the future, so if a better product becomes available, I might be unable to choose it. You think having a “clinical exception process” in place for people who want to choose a different option actually proves you’re still allowing choice? You’re wrong… it destroys my right to choose, and it gives other greedy businesses a template for denying choice, and I’m not okay with that.

This attitude needs to be here, on the faces of the Diabetes Community, in every interaction with these entities, until policies like this are a thing of the past. They’re only trying to get everything they can. I’m fighting for what I want too, and what I want is more important. And I am not ashamed to say so. Yesterday, today, and tomorrow.
 

By StephenS | Posted in Advocacy | Also tagged , , | Comments (2)

Congress, we need your RSVP. Today.

June 8, 2016 – 9:08 am

Hello again… it’s me, your friendly neighborhood internet town crier here to let you know that we need your help, by performing your own bit of (less than) 2 minute advocacy.

We (and by we, I mean the ENTIRE Diabetes Community) need your help, right now, this instant.

Over 285 members of the Congressional Diabetes Caucus and the Congressional Black Caucus have been invited to an important briefing on the impact that CMS competitive bidding has been having on senior citizens in my country.

Officially, these influential members of congress have been invited to “The Diabetes Access to Care Coalition for a briefing on ‘Impact of CMS Competitive Bidding Program on Diabetes Beneficiary Safety and Access to Diabetes Testing Supplies Analysis’“. I’ve written about the dangers of CMS competitive bidding, and I want all of my federal lawmakers to know what I know: that CMS competitive bidding costs money, and costs lives. It’s unsustainable.

Better yet, Christel Marchand Aprigliano is presenting to this esteemed group. That’s right… a patient, someone with skin in the game, as the politicians say, is going to spell it out for them. There is no one I would like to see there more.

Where do you come in? Listen… we need as many members of congress and their staff to be there in the room to hear the presentation! That’s where you come in.

Click here to invite your Congressional Representative to this gathering

It’s so easy to do this, and it does so much good. This is your chance to connect directly with your elected representative in Congress. Make sure they hear your voice, then hear Christel’s voice.

We need everyone in the room. But they must RSVP by June 10. Please help them get there by sending them a friendly message.

The whole exercise will take less than 2 minutes. Help save money for the federal government, and save a few lives in the process. CLICK HERE to perform your own Diabetes Advocacy right now… when we need you most.
 

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

Your Story Is Important. And it’s critical right now.

May 11, 2016 – 9:08 am

As you know from the UHC/Medtronic uproar last week (CLICK HERE to read my take), diabetes advocacy has taken on a renewed sense of purpose.

But when I mention diabetes advocacy, the two biggest reactions I hear from people are: I don’t have the time; and I don’t have the platform.

What if I told you that you do have a platform? And what if I told you that taking advantage of that platform could save time over, I don’t know, writing a letter and sending it in the mail. Or creating a website and posting to it. Or going onto Facebook and shouting to all of your friends and family, most of whom agree with you anyway?
Print
Enter the Diabetes Patient Advocacy Coalition. Just as they have done for the CGM Medicare and #SuspendBidding issues for seniors in the USA, DPAC has created a page (your platform) where you can tell your story about navigating the not-so-enchanted forest of healthcare. Whether it’s the latest debate about exclusive agreements with device makers, or unexplained formulary changes that force you to switch from the insulin that works best for you, you now have a place to voice your frustration and share your specific details.

CLICK HERE to access your very own platform for change.

Diabetes Patient Advocacy Coalition will be compiling the stories submitted and sharing them with the Diabetes Community, the healthcare universe, and our elected officials. So tell your story… no one else knows it as well as you. Speak from the heart. Use this opportunity to provide your own brand of diabetes advocacy, and help others who are undoubtedly going through the same things.
DPAC-Tweet-In
One additional item I’d like to share with you too: There will be a DPAC Tweet-In on Thursday night in the USA beginning at 8:00 ET. It will be an hour where we’ll get together and send advocacy tweets on the #SuspendBidding and #DiabetesAccessMatters issues, and much more. There’s a web page that gives you the entire step-by-step process so you don’t have to ask “where do I start?”. You’ll find that page HERE.

All are welcome, and in fact encouraged, to submit their story. More than that, all are needed to enact real change for our community. The best part is, Diabetes Patient Advocacy Coalition allows you to perform that advocacy on a real level in a very easy way.

Diabetes advocacy should not be the domain of a few. Take just a couple of minutes today… a couple of minutes Thursday night. I promise you that your voice will be heard. You will make a difference. And you will feel good about it. We have the numbers. Now let’s work on putting our numbers to use not only for ourselves, but for the betterment of everyone living with a chronic condition.

Thank you for your advocacy.

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

Medtronic Diabetes Advocate Forum.

April 21, 2016 – 9:08 am

MedtronicDAF
Full disclosure: Medtronic paid for my travel, hotel, and meals so I could attend this event. All thoughts, on all media, are my own and are never for sale.

I was fortunate enough to attend the latest Medtronic Diabetes Advocate Forum last week in Los Angeles, California. To be honest, it was pretty short on advocacy and long on Medtronic.

But I look at it this way: first, we did come up with a couple of good advocacy ideas (and by we, I mean someone other than me). I don’t want to steal anyone’s thunder, so I won’t reveal anything yet. But watch this space for more later. Second, if I was told ahead of time that I would get a chance to interact directly with top leaders at Medtronic Diabetes, I would have said yes anyway.

So, while it wasn’t exactlly what I expected, it was definitely worth the trip.

What did I learn? I learned that Medtronic Diabetes went through a change about a year and a half back. They have some newer people and newer roles, and they are now looking at what they do through a different lens. That includes a new mission statement:

Transforming Diabetes Care Together
for Greater Freedom and Better Health

 
Every presentation from every person we talked to revolved around the tenets of the mission statement. Here are some of the things I heard:

From Louis Dias, Chief Patient Officer: “In order to transform patient lives, it’s important to keep patient stories in mind so we can transform ourselves.”

From Alejandro Galindo, President, Intensive Insulin Management: “No two diabetes journeys are the same, but they could all be a little better.”

From Annette Bruls, President, Diabetes Service and Solutions: “Medtronic’s next generation solutions seek to answer the questions How have I been doing? How will I be doing? What should I be doing?”

From Hiten Chawla, Senior Director of Marketing, Non Intensive Diabetes Therapies: “We’re working on solutions to improve disease understanding, management, and outcomes for Type 2s and those with pre-diabetes.”

From Hooman Hakami, Executive Vice President and President, Medtronic Diabetes: “We plan to add 19 million more patients by 2020.” (side note: I was assured later that this does not mean 19 million more pumpers, but rather 19 million more patients’ lives improved through Medtronic efforts in the next four years)

There was a lot more, including a panel discussion over lunch that included everyone mentioned above, plus Dr. Francine Kaufman.

Throughout the day, I was impressed by all of the attendees, including the ones from outside the USA. I was encouraged that at the times they needed to, people were able to speak in their own languages and be heard and communicated with in their own languages. It wasn’t always loving. There were some difficult questions, but never a dull moment.

There were a few questions I wish I’d have asked. I’ve gone back and asked them since. How much is Medtronic paying IBM to use Watson’s supercomputing power to crunch data? And what kind of data is being crunched? Is it just data uploaded to CareLink? Is it all data uploaded to CareLink, for all pump and CGM configurations, or just some? I’ll let you know what the answers are.

You can probably tell from the statements above that everyone there is drinking the Kool Aid. Which is good, if you want to actually accomplish the goals you set for your company. I’m also jaded enough to know that it’s really rare that everyone is on board with the mission. And I know that regardless of how the mission looks today, changes will be made over the next few years. That’s the way it goes in business. To stay relevant, you adapt. Anyway, I like what I’m hearing so far.

I must give special thank yous to Amanda Sheldon, Senior Director of Global Content Strategy; Karrie Hawbaker, Senior Manager, Social Media; and Naomi Ruperto, Social Media Community Manager. They went out of their way and then some to make attendees feel welcome, answer questions, and take on a couple of tough issues of their own.

So while it wasn’t all-advocacy-all-the-time, the Medtronic Diabetes Advocate Forum packed a lot of information into a short time frame. Let’s watch together to see how they deliver on the message of transforming diabetes care together for greater freedom and better health. If they pull it off, we’ll all be better for it.
 

By StephenS | Posted in Events | Also tagged , | Comments (3)

I need to write a letter.

February 4, 2016 – 9:11 am

A little noise came about earlier in the week when people noticed that the stock price of Eli Lilly & Company, a large producer of insulin, had slipped six percent in a single day due to concerns that complaints of price gouging could ultimately hurt their bottom line. According to the Nasdaq report, the price of Humalog increased 10% just in the past quarter alone.

A lot of people focused on a quote from Lilly’s CEO, John Lechleiter, who, in the company’s quarterly conference call, when asked about the big increase in the price of Humalog, said that while the treatment is costly, the disease itself is a “lot more expensive.” Well, thanks a lot for that. Part of why it is expensive is because of Humalog. I think that’s what he was saying there, right? The disease itself is a “lot more expensive”, so the price of Humalog shouldn’t be a concern then, m’kay?

But it was a similar comment on the call from Jan Lundberg, Ph.D., Executive Vice President of Science and Technology, and President of Lilly Research Laboratories, that made me cringe the most. He was asked by an analyst about the “drug pricing debate”, the upcoming elections in the USA this November, how he had mentioned earlier that the industry was beginning to defend itself regarding pricing, and how he sees it all playing out over the next few years. Here is part of his response:
 
 
“In terms of what we can expect after the election, anybody that thinks they can predict the nominations, much less the election right now, I would love to talk to them. But I think this is going to continue to be an issue, or it’s going to continue to be on the radar screen because of demographics. And to some extent, as people get older, they are going to be more and more reliant on our medicines. I think we’ve got to continue to demonstrate that there’s value in the medicines we bring. Yes, they can be expensive, but disease is a lot more expensive. And emphasize the fact that low-cost generics, which account for over four out of five prescriptions today, represent ultimately the legacy of these investment efforts on our part, and provide the American consumer with tremendous value. So I think you can assume the industry is going to continue to maintain an active dialogue with each of the candidates, and to work across party lines to make sure that the views that ultimately translate into policy — and that’s what we’ve really got to be focused on — remain balanced and factual over time.”
 
 
Last time I checked, there were still no generic insulins available on the market, nearly 100 years after the discovery and implementation of insulin as a means to keep People With Diabetes alive.

Just trying to remain balanced and factual here, folks.

So, that really bothers me… the clearly false dialogue that it’s okay to overcharge patients for drugs they cannot do without, because there will eventually be generics available, which there won’t. Ever, without a fundamental change in policy at the governmental level. For heaven’s sake, Humalog was approved for use in the USA nearly 20 years ago.

That’s the frustration. What can I do about it?

I don’t know if there’s much I can do about it at all. But I know what will make me feel better. I need to write a letter.

I say a letter because on the Eli Lilly website, there is not one single e-mail address available. But they did publish the address of the home office in Indianapolis.

Do you want to write a letter too? Does this comment bother you enough to voice your concern?

Address it to:
Jan Lundberg
Lilly Corporate Center
Indianapolis, Indiana 46285 USA

Use your words. Tell your story. Be fair. Be kind. Above all, speak from the heart.

I will be putting together my own message, which I’ll share once it’s sent. I don’t know if it will do any good, but I know it will make me feel better. And it can’t hurt.

It should be noted that Eli Lilly & Company provides a lot of insulin to the IDF’s Life for a Child Programme, which also is helped through donations to Spare a Rose, Save a Child. So we’re on the same team there. Lilly helps provide assistance for people having trouble meeting the cost of their medicines. All initiatives that deserve praise.

They also have an executive who made a disingenuous comment on their most recent quarterly conference call, and that should be noted as well.
 

By StephenS | Posted in Advocacy | Also tagged , , , | Comments (4)