Category Archives: Advocacy

(Almost) Wordless Wednesday: Motivational Symbols.

October 28, 2015 – 9:32 am

Lately, because of everything that’s been going on in the rest of my life, diabetes seems to have taken a back seat. Or, more of a back seat compared to how active I’ve been over the past few years. I’ve been lamenting that for a while, for two reasons: One, I’ve found that I have a passion for diabetes advocacy; and Two, I feel like I haven’t been paying enough attention to my own health lately.

So when I was cleaning up around the house this weekend and I came across this bracelet, I decided to give it another fling. It says: ACT ON DIABETES.NOW.
bracelet
For me, it means Acting On Diabetes in two directions: Outward, and Internally too. Maybe hanging this on my wrist for a few weeks will get me refocused on what I do well, and most of all, what is important. I’m not unhappy with me… I’m just looking to be a little more energetic when it comes to taking care of myself, and helping others where I can.

If a blue bracelet can help me do that, then okay. I’m all for motivational symbols. What motivates you?
 

By StephenS | Also posted in Additional Inspiration | Tagged , | Comments (1)

Public Workshop Alert.

September 9, 2015 – 8:59 am

After writing here for 3½ years, I can tell you that there is no shortage of people who like to add their two cents on a subject. Whether it’s insulin costs or the importance of Medicare coverage for CGM users, the Diabetes Online Community knows how to speak up when asked.

Here’s something you may not have heard of yet, and it’s tailor-made for you to learn something and speak up too.

On September 29 and 30, the U.S. Food and Drug Administration is hosting a public workshop. The workshop is geared toward the discussion of patient labeling on medical devices, like insulin pumps and continuous glucose monitors (and maybe artificial pancreas systems?). To be fair, it is not specifically diabetes related, but discussions at this event could certainly have implications for People With Diabetes.
FDA
The workshop will be held at FDA’s sprawling White Oak campus in Silver Spring, Maryland, outside of our nation’s capital. The two day agenda includes presentations from FDA staff and others, and will cover things like FDA’s development and review process, new approaches to patient labeling that aren’t necessarily paper-based, user assistance information, and more. I really like the way day two begins, with a session on Identifying the Gaps in patient labeling, followed by a session on Closing the Gaps in patient labeling.

If you live in or near Washington, D.C., this is an awesome opportunity to not only find out more about patient labeling of our devices, but actually join in the discussion too. Let me give you the link so you can find out more:
CLICK HERE to find out more and register for this public workshop
 
 
Also: Although there are no details yet, FDA says that there will be a webcast of this workshop.
 
 
So… for everyone who says, “What can I do?”, my answer is this. You can do this. You can listen in, or attend, in person, this public workshop. You can take notes. You can form your own opinion. If you are there in person, you can speak on behalf of all of us who are living with or affected by diabetes. When it’s over, you can tell everyone you know about what happened and what was discussed.

And I will be thankful you were there for me.
 

By StephenS | Tagged , , | Comments (0)

What has to happen?

September 4, 2015 – 9:18 am

I’ve wanted to ask this question, and know the answer to it, for a long time, even before I started blogging:

Why does the cost of insulin continue to skyrocket?

What I’ve found out so far is very little. At least very little that allows me to point my finger in a definite direction and say “this is why”. It’s complicated, and if I were to begin to point a finger in a particular direction, that’s where I would start. We can’t find the forest of cash for the trees.

The information on drug research, side effects, production costs, costs to file with regulatory authorities like the U.S. Food and Drug Administration, efforts to build marketing campaigns and pay sales reps to visit endocrinology practices is…. Non-existent. Nobody knows how much it costs to bring a new insulin onto the market (and keep it selling), and depending on how each phase of research, development, and rollout goes, the costs might vary.

Let’s not forget about the rest of the overhead. In Novo Nordisk’s latest financial results, 11.2 percent of their 4 billion dollars in revenue from January through June went to administrative costs, which includes things like pay and benefits, but not only pay and benefits. That’s 448 million dollars.

That seems excessive. And maybe it is. Maybe it’s not. The point is, we don’t know what’s excessive and what’s not in a financial statement for a company that grossed 4 billion dollars in the first six months of the year and published all of its financial line items in a one page document.

Eli Lilly did a much better job, I thought, of detailing their latest quarterly financial statement, but then again, they’re on the other end of the spectrum, and I had to search a little to find Humalog sales listed in the 28 page statement. In case you’re wondering, it was $1.3 billion year-to-date. For a drug that’s nearly 20 years old. Even if it cost a billion dollars or more to develop and produce these drugs, they have certainly more than paid for themselves by now.

But let me back off here. Maybe I shouldn’t point at Lilly and Novo. It’s not just about how much money is being made.

Actually, it’s about the right of a patient to get medication they need to survive, at a price that won’t have to make them have to choose between staying healthy and putting food on the table. Make no mistake: As insulin gets more expensive, this type of decision is already being forced upon a growing number of People With Diabetes here in the USA.

How companies (by companies, I mean drug makers, insurance, hospitals, etc.) reach the point where they charge as much as they do, and we get closer to the breaking point budget-wise, is a matter of great confusion. I really don’t know if this is by design, or if I just don’t have a good handle on the numbers. Here’s what I know:

Insulin should be more affordable.

When I’m tasked with solving a problem like this, I often think back to when The Great Spousal Unit and I bought our house. We knew we were ready to buy, but we didn’t even know if we could even get a mortgage, let alone whether we could afford one. So my solution was to find out what needed to be done to buy a home, and complete each step along the way, until we either moved into our house or knew where we didn’t qualify.

So in this case, I begin with the overarching statement: Insulin should be more affordable. Now the idea is, what needs to be done to make insulin more affordable? What are the steps? Can they all be accomplished? If they can’t all be done, what can’t be done? Why? How do we break down the barriers? What would have to happen to make insulin more affordable?

Why is a drug discovered nearly a century ago more expensive than ever?

Why is a drug approved in 1996 more expensive today than it was when it was approved?

I don’t know if I will get anywhere. But I really want to have a better working knowledge on this subject. I don’t know how long it will take, but I’m going to try to find out as much as I can.

In the meantime, feel free to give me your knowledge, if any, on why the cost of insulin is getting farther and farther out of reach. I’ll let you know if I find out anything.
 
 
There are programs dedicated to helping those who have difficulty meeting the cost of insulin and other diabetes drugs and supplies. Including programs run by Novo Nordisk and Eli Lilly & Co. Rather than re-inventing the wheel, I’ll refer you to this helpful post on the subject from Christel at The Perfect D:
Need Help with U.S. Diabetes Supplies and Medications?
 

By StephenS | Tagged , , , , , , | Comments (3)

Be a joiner.

July 20, 2015 – 11:00 am

If you know me, you know I can be skeptical of new things.

But today, I am, in fact, a joiner. The truth is, I want to join good causes, with good ideas. That’s why I’m a joiner today. Today, I’m joining forces in a big way with the Diabetes Patient Advocacy Coalition. And I’m inviting you to become part of the coalition too.

DPAC is a non-profit, non-partisan group designed to bring a united, patient-centered voice to issues affecting all People With Diabetes. It’s right on their website:

”We envision a strong patient voice in diabetes policy. A voice that unifies advocacy to the shared challenges of physical and emotional care needed to live well with any type of diabetes.”

Sort of an e pluribus unum (out of many, one) approach to diabetes advocacy. And DPAC makes it easy… click here, do this, send it there kinds of steps that allow you and I to take part in advocacy efforts without giving up an entire weekend or even an entire weeknight. In fact, I was able to e-mail my congressman and U.S. senators in probably less than two minutes.

Let me ask you: What is most important to you?

– Is it getting Medicare to cover continuous glucose monitors for seniors living with diabetes?

– Is it ensuring safety and quality in all of the devices we depend on to keep ourselves alive each day?

– Do you want to make sure that glucose testing in a multi-patient environment (like hospitals, for example) is done in a safe and consistent manner?

These are just a few of the many issues that Diabetes Patient Advocacy Coalition is helping us bring to the attention of lawmakers. They make it easy to e-mail elected officials with unified language we can use (or update with our own story, if we choose to do so).

Getting the issues in front of us to see… helping us say, in one voice, multiple times over, that better care, better drugs, better devices, and better coverage for all of those things are important to everyone living with diabetes. That’s what Diabetes Patient Advocacy Coalition is all about.

So I urge you… become part of the coalition. Be a joiner like me.

Go to diabetespac.org, sign up, and add your voice to the chorus. Because we need you. Because I need you.

This is probably the one and only PAC I will ever be a part of. Why? Because your life, and my life, are too important not to take advantage of the opportunity to make our voices heard. Let’s not stop until our voices are heard. With you as one of the many voices.
 
 
 

By StephenS | Tagged , , | Comments (0)

Advocacy in the 21st Century.

July 6, 2015 – 9:36 am

Tuesday and Wednesday this week, over 100 people will attend the second MasterLab, presented by Diabetes Advocates and Diabetes Hands Foundation.
Get the agenda HERE.

They will hear from a number of advocates who have accomplished much, inspiring others and moving our cause forward in a variety of very big ways.

But what about the rest of us?

When I speak to People With Diabetes about diabetes advocacy, they almost universally say “I don’t see myself as an advocate”. They explain this by saying that they’ll never be able to do what so-and-so does, and while they do some things, they don’t really consider those things advocacy.

When people say this, I think they’re wrong.

In many ways, that’s the problem with how we view advocacy in our world: We tend to measure any advocacy we perform against the biggest feats of advocacy we’ve ever witnessed. If it doesn’t measure up to that, it’s not advocacy to us. To me, diabetes advocacy has a much broader definition. If it doesn’t, then I think I may need to get out of the advocacy business altogether.
 
 
Let me ask you:

Do you participate in the Diabetes Online Community? Have you learned anything from what you’ve seen, heard, or read?

Do you go to events where speakers talk about new drugs, new research, new technology? Have you ever read a book and learned something you didn’t know before?

Have you ever helped someone in your life understand better what it’s like to live with diabetes every day?

Have you ever written your elected officials to ask for better care, CGMs for persons on Medicare, or funding for diabetes research?

Have you met in person with another Person With Diabetes and just listened to them tell their story?

Have you shared your story, your successes and failures, with even one person? Even a family member or a significant other?

Have you ever offered a helping hand to someone in need of extra supplies, a replacement bottle of insulin, a spare CGM transmitter, or a shoulder to cry on?

Have you responded, truthfully and honestly, to someone who posted something about diabetes, whether it inspired you or pissed you off?

Have you just lived your life with diabetes the best way you know how?

To me, all of those things are advocacy.
 
 
You know, not all of us can raise thousands of dollars for research all at once. Not all of us can donate that kind of money all at once either. When someone tries to shame or stigmatize us, we can’t always get there first with the most anger. Not all of us can go on television or radio, or even a podcast, and bring our message to the masses.

But we are not helpless, and we are not alone, and we are not insignificant.

What we can do is learn. What we can do is share what we’ve learned. What we can do is support others doing the same, in large and small ways.

Because when we do even the smallest thing to advance our cause, we are advancing our cause. My guess is that you are making a difference.

My plea is that you continue to do so.

Care to share your story of advocacy? Leave me a comment below!
 
 
 

By StephenS | Tagged , , , | Comments (3)