Category Archives: Advocacy

Perspective.

June 16, 2014 – 9:59 am

I had one of those conversations last week. I was talking about my recently completed clinical trial, and I was going into too much detail. It’s pretty clear to me that the person I was speaking to thought participating in the trial was nice. But what was being studied (artificial pancreas) didn’t interest them in the least.

I blame that on me. If you’ve participated in the Diabetes Online Community for any length of time, you probably know how keeping up with every last thing can take up a lot of your time. But have you thought about how it changes your perspective?

This writer thinks about it from time to time. I’m not so worried about the DOC taking up all of my time. I manage that as well as I can, sometimes great, sometimes not so great. That’s okay… that’s life.

What this writer is more personally concerned about is in translating my story for the masses. Not so I can get a T.V. movie about my life produced, or anything like that. More in the sense that, as an advocate for people living with and affected by diabetes, I need to find a way to connect the Average Joe with my story and your story.

Diabetes cost the American economy 245 billion dollars in 2012. That impacts the lives of people not living with diabetes in many ways. Insurance costs that increase because of more hospital stays that happen due to test strips being inaccurate, or because we don’t have a device that will safely help keep us from going low overnight. Additional costs to the patient for drugs that are amazingly expensive but absolutely necessary. Increased absences from work or reduced productivity due to any number of ways that diabetes tries to kick us every day.

Average Joe doesn’t need to know how an insulin pump or continuous glucose monitor or artificial pancreas works, but they need to understand why pumps and CGMs and artificial pancreas development is so important. I need to communicate the story of how improving the lives of people living with diabetes matters to everyone. Because it does. Part of my job as an advocate is to connect the dots, regardless of the level at which your pancreas functions (if it does at all).

So I’ve reached one of those points where I need to pull back a bit and think big picture. It’s not always about how the person with diabetes identifies with my story. Sometimes it’s about how diabetes affects someone else’s story, whether they realize it or not. Because it does.

I’m definitely a work in progress.
 
 
 

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An update.

May 7, 2014 – 10:43 am

A quick update on my story from Friday, when I lamented those “Cash for Diabetic Test Strips” signs showing up in low income parts of Baltimore:

One of the local news outlets (ABC2) has a relatively new in-depth news show called In Focus, which tries to do more of a deep dive into local stories of interest. Well… last night they did a story on these signs, and interviewed a couple of people, one of which is executive director of the Maryland chapter of the American Diabetes Association, and one who is living with Type 2 and really has something to say on this subject.

They didn’t do as in-depth a story as I would have liked, but it’s very nice to see that someone else is talking about this issue in my town. Here’s the link to the story:
http://www.abc2news.com/news/region/baltimore-city/cash-for-test-strips-diabetics-putting-their-health-at-risk

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On a related note, Manny Hernandez and I were interviewed by the same organization (separately) for an online story about diabetes. Manny’s part is at the beginning, and it’s very good.

Unfortunately, the reporter did not get the facts right in my case (near the end). I am not participating in an Artificial Pancreas trial in Virginia—yet. That may change in the near future, but when I spoke to the reporter, I didn’t say I was participating in an AP trial. To be honest, I’m kind of embarrassed about it. If I get turned down for the trial (which is possible—I’ve been turned down for two others), I’ll feel like I’m misleading anyone who might read it. So keep that in mind if you decide to read this:
http://www.abc2news.com/news/health/advances-in-diabetes-testing-technology-improves-patient-care

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I did find out a little more about the “Cash for Diabetic Test Strips” issue, and I’m working on a still more. Hopefully, I’ll have something meaningful to talk about when it’s all over. Happy Wednesday!

1:10 p.m.– An update to the update: I received a phone call a little over an hour ago to let me know that I met the criteria for a clinical trial that indeed does have an artificial pancreas component. Phew! At least I don’t feel as bad as I did yesterday about it. I’ll tell you more about it next week.
 
 
 

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Tuesday is ADA’s Alert Day.

March 25, 2014 – 9:21 am

alert-day-2014-banner-728x90

Tuesday marks the American Diabetes Association’s 26th annual Alert Day.

It’s an effort to find as many people as possible who might be at risk for developing Type 2 diabetes. They do that with a simple risk test. Many of us know that 26 million Americans are living with diabetes of one type or another. But did you know there are 79 additional Americans who are at risk of developing diabetes? Alert Day is designed to help people identify if they are at risk, and then encourage them to make healthy choices to help them do what they can to be as healthy as possible.

Part of our job as advocates, I guess, is to help educate people about diabetes, and help them get help when they need it. So… if that’s the case, maybe we should encourage those we love who aren’t living with diabetes to take this test.

One of the best things about that is the fact that Boar’s Head Brand® (the deli products maker) will donate five dollars to the American Diabetes Association (up to $50,000) for every test taken.

The test is available in both English and Spanish. You can find it on the ADA’s website at diabetes.org/risktest, or on Facebook at facebook.com/AmericanDiabetesAssociation.

Knowledge is power. Share this with someone you love today.
 
 
 

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No CGMs on Medicare? What????

February 18, 2014 – 10:23 am

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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Remember to Spare a Rose… Don’t forget to Save a Child.

February 9, 2014 – 11:41 am

SpareARose

(click on the banner to give– now)

 
 
The Spare a Rose, Save a Life campaign is getting closer to its target every day. They’re $6,000 or so toward their goal of raising $10,000 by Valentine’s Day to provide life-giving insulin to children in need around the world.

The notion of the Spare a Rose, Save a Life campaign is simple: If your intent is to give a dozen roses to someone special this Valentine’s Day, why not give eleven and donate the cost of that 12th rose (about $5.00 USD) to the International Diabetes Federation’s Life for a Child campaign? Only $5.00… You can handle that, right? You might even be able to handle more than five bucks.

What does that money buy?
 
 
Five dollars provides life-giving insulin for a child in a developing country for an entire month.

Thirty dollars helps to keep a third world child with diabetes alive for six months.

Sixty dollars worth of insulin sustains life for a child with diabetes living in Haiti, Kenya, the Phillipines, and 40 other countries for an entire year.

There are just a few days left in the campaign, though you can give to Life for a Child anytime. Won’t you help? Let’s continue to show how special and giving the Diabetes Community is.

The need exists… Some have the means to help… And all of us have the ability to communicate. So join in the final push toward the goal for Spare a Rose, Save a Child. If you haven’t yet, consider making a donation today at sparearose.org/give. Or click on the image at the top of this post. Oh, and don’t forget to share this initiative with all of your Friends on Facebook and Followers on Twitter.

Let’s go over that $10,000 number and revel in the lives that will be saved through your efforts.
 
 
 

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